FALLON MIRSKY

Please help SAVE MY LIFE!

The Flyer Hopefully Being Posted EVERYWHERE

The Flyer Hopefully Being Posted EVERYWHERE

Please help me fulfill my birthday wish to get well. Suffering from a rare and life-threatening disease, I am rapidly deteriorating and desperately need HELP in order to be able to receive the life-threatening treatment that I require to live. I suffer from a very rare neurological disease/autonomic dysfunction and severe Acute Intestinal Pseudo Obstruction. I need very expensive treatment including surgeries, medication, ketamine comas, even a transplant (small and large intestine, stomach, liver, pancreas). Due to the complexity and severity of my illness, we even have to travel across the USA to receive treatment. I have been living in a constant “Hell!!” Please help me because without your support, I will definitely not see my next birthday because we can no longer afford these treatments. Any help is much appreciated!! I don’t want to die. Whereas most people dread seeing their birthday and getting older, I will be really happy to be able to turn another year older. Please spread the word of my website and say a prayer. I need all the help I can get.

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January 24, 2013

ImageHi-

Well… it’s about time I guess I should write and say what has been going on.  I haven’t been feeling well lately, so I haven’t been able to do so.  Things have been really going downhill, as I have really taken a big turn for the worst.  However, knowing that I have taken this turn and anything is possible… I figured that I would write and inform you all that has been happening because so much has been happening that it is unbelievable.  Plus… I am so very ill lately that I honestly don’t know how much longer I can make it. I am literally hanging on by a thread.  If this update is a little mumble jumble, please bear with me because I am so very ill. But like I said before, I want to inform you all that has been happening and all that is going to be going on.

First off, I am not doing well.  I have unfortunately taken a turn for the worst.  I am really afraid because I honestly feel like I am going to die.  In fact, my parents are very scared that this is going to happen because I am not doing well at all.  I am rapidly deteriorating and we are hoping that I am going to “bounce” back.  However, I have never been this bad and I am really suffering.  I am really giving not only myself a big scare, but my family is fearing for my life.  In fact, we are trying to hold onto staying “home” as long as possible because I am supposed to be leaving for California on February 3rd, but it looks like we might be forced to leave for John Hopkins or Cali as soon as possible because I need to be hospitalized. 

As I have taken a turn for the worst and barely hanging on, I really need to be hospitalized.  My body is literally shutting down and we are witnessing events with my body that we have never done so before.  I am scared because I have seen the exact same thing happen to my grandma (in the exact sequence), and she died within 2 months.  I really need desperate help and if I don’t receive the necessary help that I need, I fear that I am going to be suffering the same fate. However, the problem is that there just is no money to be had. 

Even though I need to be hospitalized immediately because my life depends on it, we just don’t have the money to do this.  We cannot afford many things anymore because of my costly disease.  My disease has really stripped my family of money.  I know I shouldn’t let money stand in my way of getting “help” in the hospital, but all I see is dollar ($$) signs and I don’t want my family to suffer anymore or to go into anymore debt.  They have suffered enough.  They can’t even pay the bills that they have now.  They can’t even pay the mortgage.  We are even having difficulty putting food on our table.  They have done so much for me already, I can’t ask them to suffer more.  I just wish that I could receive the necessary “help” that I need through the media or something because I need donations so badly.  Without help from others, there is no way I am going to be able to pay for treatment or even be hospitalized and therefore, I am going to die in the very near future.

I really need to be hospitalized because my body is shutting down and the organs are failing.  I am the definition of total system failure.  I have multi-organ failure… or however you say it.  Anyway… even though I have always suffered from discoloration throughout my body because of my neurological disease and autonomic dysfunction, my legs are becoming “blacker” than ever.  I can’t believe how “black” my legs are actually becoming and the blackness isn’t disappearing either when the legs become elevated.  In the past, the coloration in my legs resumed somewhat normal coloration when they were raised and elevated, but nowadays that never happens.  No matter how much I keep them elevated or how long, they still remain black.  Therefore, it shows that the circulation is just not there anymore.  The tissue is just completely dying.

I am also suffering from severe edema especially in my legs. We already know that my heart is in jeopardy and having problems because my heart bloods are not good at all.  My heart bloods have been so low lately that I can easily have an arrhythmia or even have cardiac arrest.  However, it is at the point now that I am having edema all in my legs as well.  Edema is an accumulation of an excessive amount of watery fluid in cells or intercellular tissues. 

The edema can be the cause of either the heart problems and be further proof that I am going further into heart failure or it can be a result of my kidneys failing me.  In terms of the heart, this is when the heart cannot pump blood properly to all parts of the body. If one or both of the lower chambers of the heart lose the ability to pump blood effectively, the blood can accumulate in the limbs, causing edema.  My kidneys have also been failing me lately because of the pressure that has been being exerted on them.  Due to my failed GI system, there is so much pressure being exerted on all my organs, which are causing them to further to fail.  The pressure is even being exerted on my heart and the doctors are very fearful of that because it is causing its own host of problems.  It is very dangerous to have pressure on all these organs.  Plus, with me being so tiny, it really compounds the problem.  The edema is so very bad that I can literally fingerprints in my foot and leg.

I have been getting the worst chest pains lately and also have felt like I am coming out of my body.  It is really the weirdest feeling.  It is so very difficult to explain and only someone going through it or who has went through it would probably understand it.

In addition, I have been getting the worst spasms and cramps throughout my entire body.  This is a further sign that my bloods have fallen even more and my heart or kidneys are failing.  A muscle spasm or cramp is a painful involuntary contraction that can stop even an athlete in their tracks.  Muscle cramps are when a muscle gets tight (contracts) without you trying to do so. The muscle gets tight and does not relax. Cramps may involve all or part of one or more muscles.

I never had spasms and cramps like I have been getting.  I can’t even stand without collapsing.  The spasms are throughout my legs including in my ankles.  I can’t even walk no matter how hard I try.  I am really getting scared.

I also have been bleeding more and producing more mucous from below.  We are still no certain where the bleeding is coming from because the doctors are unable to do certain tests that would determine that.  All we know is that it is coming somewhere from internally. In terms of the mucous, we don’t even know exactly what is causing this either.

With all the mucous and blood, I have also lost some more weight, which is the LAST thing that I could afford.  I was already less than 70 lbs., so losing any weight is really detrimental.  Doctors already said that I wouldn’t be able to survive at any lower of a weight and here I am… losing some weight.  I am really becoming petrified because I am coming closer and closer to the 50s.  That really freaks me out. 

I really need to be hospitalized, but unfortunately I can’t just go to ANY hospital.  Since I suffer from a rare and complicated illness, I have to go to a hospital that will be able to handle me.  Therefore, the only 2 hospitals that I am able to go to is of course Stanford Hospital, which is in California and John Hopkins, which is in Maryland.  Of course Stanford is the best option, but unfortunately it is on the other side of the country.  John Hopkins is at least located in Maryland, which is only 5 hours in driving and only a little over an hour if we fly.  The doctors in Stanford told me that in an emergency to go to Hopkins because that is where their “mentors” are located.  It is also the closest hospital to be airlifted to if there is an emergency. 

So… the only 2 hospitals in the pot to go to are Stanford and Hopkins.  Even though I really need to go to Stanford, it is across the country and definitely would require a plane to go to.  With all that has been happening with me, we aren’t sure if putting me on another plane is even the “smartest” thing to do.  We think that perhaps putting me on another plane might further do harm, so dad is thinking about putting me in the car and driving me there.  Plus… if you think about it, it really is the same amount of time whether you drive or fly because by the time you go to the airport, park the car, get there over an  hour before because you have to go through security, etc.… it really comes out to the same time. You know?  So you really aren’t saving anything time wise and at least we will have our car with us if we drive.

But like I said in the beginning, we are really suffering with not having money and we cannot afford to really have me hospitalized.  Not only would it cost money to have me hospitalized because no one does it for free, but we would have to pay for traveling expenses and my dad would have to have hotel arrangements and everything.  We just don’t have the money.  If only the media did a story on me or more people knew about my story.  Perhaps more funds and support could be brought in to help so I wouldn’t have to worry about something so important as this.

You know things are bad when I don’t even get dressed, put makeup on, or wash my hair. Even though I don’t really go out, I still like to look my BEST.  After all, if you look good, you feel good.  Plus, I don’t like to look like I am sick if anyone should see me.  So, I always try to conceal it and try to make myself look as GOOD as possible.  That is why when people see me, they don’t fully realize how truly sick I am.  I am able to hide it.

In addition, whenever I feel like I am going to the hospital, I especially make sure that I wash my hair in the sink.  I can’t take a shower due to my autonomic dysfunction and neurological disease because of the sensitivity.  Therefore, I always end up washing my hair in the sink.  I always make sure my hair is washed when I feel like the hospital can be an option because I don’t want to go to a hospital “dirty.” 

However, I am so sick right now that I can’t even do any of that.  I am not able to wash my hair, get dressed, or even put make up on.  For me not to do any of that… it really shows something is definitely wrong.  I also have been sleeping a lot lately because I feel so very weak.   

In the meantime, my parents are watching me deteriorate.  We are trying to get medicated ice-pops in me as much as we can.  They have medicine that is good for my heart and everything.  I take them around the clock… even all throughout the night.  Dad actually goes down at like 3 AM to get them.  There isn’t anything that Dad wouldn’t do for me. 

Mom is trying to keep me busy and my mind going so that I am kept as calm as possible.  She has been playing games on the iPad with me.  She really is the best. 

My parents are blaming going to Indiana as a BIG part of the reason why all of this is occurring.  I am very weak and fragile and every time I “travel,” it isn’t easy on me.  Anyway, my parents are very upset because this time when we went to Indiana, we went all the way there for absolutely NO REASON!  I literally went all the way there for them to send me home.  They didn’t even put a finger on me or examine me.  Instead, we just literally sat at a table and they said to me, “Go home and enjoy whatever time you have left!”

I never saw doctors so livid.  When I told my California doctors all that happened in Indiana, they were absolutely infuriated.  They know how much I need that transplant and how urgently it is needed.  Without it and without it soon… I am definitely going to die.  California wants to do the transplant but their hands are tied.  Unfortunately, the insurance dictates where I can have the transplant and even though only 6 hospitals in the country can perform this rare, risky, and radical transplant, they will only pay for the transplant to a point in Nebraska or in Indiana.  They will only pay for me to have it in places that are not at the best places for me to have it done.  In Nebraska, they don’t even do “multivisceral organ transplants.”  They just really do intestinal transplants and therefore, I would be like a ‘guinea pig.’ In addition, the head doctor that was supposed to be their “best” doctor isn’t even there anymore.  So why would I want to have it there?  As for Indiana, they sent me to a place that seemed like they would want to do it and then they literally denied to do it.  So… I am basically left with nothing.

ImageWe can’t believe that we went all the way to Indiana for nothing.  When we saw the doctors, my dad said he saw it right away that they weren’t going to do the transplant, but he was still hoping that he was wrong and that they were going to do it. 

The doctors in Indiana refused to even touch me.  They knew nothing about my underlying neurological disease and autonomic dysfunction.  They took one look at me and literally FREAKED.  They said I was the most complicated and complex person that they have ever seen.  They were freaked out about everything about me… my weight, my discoloration, etc.

I have some theories why they made me come all the way there to only turn me away.  One theory is that they didn’t realize truly how BAD I was until they actually saw me.  Then when they saw me, they literally freaked out and knew that they were in over their head.  Another theory that I have is that perhaps they were hoping that they could pull it off because lets face it… whoever cures me or helps me has it “made.”  They will write me up in the journals and become famous.  But then when they saw me, they realized that they were in over their head and that was it.  Finally, another theory is that my story is so complicated and exquisite and unique that maybe it was just unbelievable.  Maybe they thought it could never be that bad!  You know?

I did learn some things though when we went though.  I found out that I am so very tiny that the transplant donor would have to be only 5-8 years old.  Can you imagine?  I was shocked to hear that the donor would have to be so very young considering that I am an “adult.” I mean… I know that I am tiny, but shouldn’t my organs still be the same size? 

So here  I am… now sent home from Indiana because they couldn’t help me. Now there is no where to get the transplant that could save my life because the ONLY place that can and want to do it are unable to do it because of the cost of it and the insurance not willing to pay for it.  I need now donations and support more than ever if I am going to live and be able to have this transplant because that is the only possible way it is going to happen.  My California doctors are trying to fight with the insurance company because the places that they are willing to pay refuses to do it.  But… who knows what is going to happen with that.  I know it probably won’t do anything.

Indiana basically sent me home basically to DIE.  They said that I should “Just enjoy whatever time I have left.” They said that I could buy some extra time by having TPN put into a central line, but I said to them “NO WAY!” I told them not to tell that to my dad because they are giving him false hopes that I am going to live longer and in reality, it is only going to make things worse.  I told them that it is no way to live because it will only bring about further suffering and it is not worth spending my last days suffering.  I want to enjoy whatever time I have left… not suffer more.  You know?  Total Parenteral Nutrition (TPN) is a last resort feeding mechanism that can be used only temporarily in cases where a nutrition boost is needed short-term or immediately following surgery. 

They said that I can get TPN put into central line.  Yet, first off, they refused to even touch me to put the central line into me.  So I would first have to find someone to put the central line in. So how can they say to do something and then refuse to do the procedure, right?  Second of all, it will only aggravate my disease.  It will cause my neurological disease and autonomic dysfunction to worsen because anytime anything traumatic enters my body or have a foreign object in me, it worsens it. 

People on TPN are at high risk of sepsis (infection in the blood stream). It is more common to develop sepsis on TPN than people who are on chemo because the high sugar content in TPN draws bacteria into the central line. In addition, people on TPN often have a lot of bacteria and fungus, which builds up in the small bowel and passes into the bloodstream increasing infection rates. Another complication of TPN includes liver failure if used long term. This varies in individuals as some on it for many years never develop problems, while other develop them within a few years.

Indiana had no idea what they were saying.  They were totally contradicting themselves allover the place.  Due to my illness and receiving organs from a 5-8 year old and my body structure, they said to me that they didn’t really want me weighing more than 100 lbs.  However, they said to me that they MIGHT be willing to do the transplant if I gained up to 90-95 lbs.  When I told this to my doctors in California, they laughed and was even more infuriated.  Not only were they mad that they didn’t even examine me made their decision based upon just looking at me, but they said “if you can gain weight or weigh that much, you wouldn’t need a transplant in the first place!”

All I wanted to do was to get out of Indiana.  The doctors at the meeting kept hemming and horning that they weren’t going to do it, but instead of just saying it directly and letting me go… they just beated around the bush.  It got to the point that I said, “Look… face it… you aren’t going to do the transplant.. you are freaked out… so that is it! I just wanna go home!”  All I wanted to do was cry, but I didn’t want them to see.  I wanted them to leave the room so much so that I could cry without them seeing me.  I mean… I was literally given a life sentence.

So now I have nothing else left except either the transplant in California if I either end up paying for it myself or if by some luck the doctors get the insurance to pay for it…, which I highly doubt.  I also highly doubt I will be able to pay for it because it is so expensive and I am not even receiving enough support to receiving enough treatment to sustain me at home in terms of medication, weekly ketamine comas, traveling expenses, copayments, etc.  Money is so “tight” that I cannot even talk to a psychologist!  It is bad enough that I am suffering physically, but the emotional torture that this is playing on me is enormous.  However, I can’t even get the help that I require in that area either or get help dealing with this or dealing with “dying” because we can’t afford it.  Money just rules the world.  “When I was young I thought that money was the most important thing in life; now that I am old I know that it is.”  It really is true what Mark Twain once said… “the lack of money is the root of all evil.”

So besides hoping and praying for California to be able to do this transplant that I know deep down won’t be able to be done, the only other option that I have is the ketamine coma.  It is also very rare and radical and risky, but it is my only chance. Like I said in previous updates, I really need to go out of the country to get the necessary ketamine coma that I require because the amount that I need is not FDA approved.  However, it will end up costing me about $100,000, which is also not covered by insurance.  So, I will still need help from people. I am so very desperate! 

In the meantime, I am headed to California because even though I won’t be able to get the really intensive ketamine coma with that really HIGH dose, at least it will be much higher than I am getting here in New York.  So, I am supposed to be leaving February 3rd for California to get clearance and work on receiving the coma.   We are desperately running out of time and hopefully this will work.  This is my only other option.  After all, in a high enough dose, ketamine can hopefully reverse the disease… at least reverse the autonomic dysfunction and autonomic dysfunction. 

Even though I did receive bad news in Indiana, I did get to spend some time with my dad.  It was really nice to be with him.  I love spending time with my dad because he is not only my dad, but my very best friend.  He takes such great care of me.  He isn’t taking the news that we received very well.  There isn’t really any talking to him to be quite honest with you.  We all know that if something happens to me, he would never be able to survive.  He keeps saying that he is “never going to let me die,” but in reality… he isn’t in control.

ImageIt was so cold in Indiana.  I can’t believe how cold it was there.  It actually was -2 degrees without the wind-chill.  Can you believe it?  At least when we go to California, it is supposed to be warmer.  I hate the cold. 

At least the people in Indiana were so very nice.  I did meet a few people there and they were willing to help me raise some money and pray for me.  Any help that anyone can do is much appreciated, so having them offer to do all this was truly wonderful!

Wanna hear something hysterical?  I can’t go through the scanners at the airport anymore.  Whenever we travel on planes from now on, we have to call the airport prior to traveling because I cannot pass through the security system.  When I pass through, it comes out that I am a “terrorist” and that I am “concealing” weapons.

I am so very bony since I weigh absolutely nothing that my bones are literally setting off the security machines.  My dad places me in the body scanner and when the scanner looks at me, it comes back as if I have weapons and illegal devices on me.  Yet, it is only my bones showing up.  We literally had such a hard time getting through security both ways, which even forced us to miss our flight going to Indiana.

When we were coming home from Indiana, it literally took like 30 minutes to get through security due to this problem.  We had supervisors coming over and everything.  The supervisor ended up giving me her name and she had to make amendments to the rule in order to let me pass because otherwise I wouldn’t have been able to fly.

Well… I guess that is about it.  I have written a lot and really not feeling well.  My birthday is coming up.  It is February 7th… so I am really hoping that I make it.  I will be in California for SUPERBOWL Sunday.  It should be very interesting because one of the teams in the game is from San Francisco.  I am not a Football fan, but since I was going to be in San Francisco, I was hoping that the 49ers would be in the SUPERBOWL.  Gosh… I bet San Francisco is really going to be “hopping” since they are.  I wonder how we are going to have dinner because the bar is usually crowded as it is… I can’t imagine how crowded it is going to be with it being SUPERBOWL!!

My parents have been taking really good care of me.  Dad keeps asking me if I want to go to Hopkins and/or Cali because even though he knows we really can’t afford it, he doesn’t want to lose me.  But… I am trying as long as I can to hold on because I don’t want to cause any more problems for them.

As it is… I am supposed to have another surgery on Saturday, as well as another ketamine coma.  So perhaps I will maybe feel better after that.  I can hope, right?  They are going to do some surgery on my spine and work on the L3 nerves because they are going to see if that will help with some of the pain and me collapsing with my legs.  Hopefully it will because I am really suffering. 

We have also been looking into getting a service dog.  Since I am so very sick, I not only need help because I have a mobility impairment, but I need help in case I need “help” in an emergency since my disease is really shutting down my organs and body.  I am extremely weak and I need help picking up items, turning on lights or getting the remote because I am so weak that I can’t always get off the couch/bed, getting the remote control, providing balance because I walk with crutches and when I get up I get very shaky and possibly can fall, etc. It would even be helpful to have the dog acquire the phone in case of emergency because I am so gravely ill.  I have trouble breathing and I would definitely need in notifying HELP if needed.  There are plenty of that I am so very ill that we don’t even know if I am going to make it through the day/night. This dog can literally SAVE my life.  After all, not only can I not walk, but my organs are shutting down.

Well… as you have just read… things are really bad.  I don’t mean to be a “crier” but as you can see… money is really a big issue right now.  If you have any way of spreading the word that I need desperate help or a way of raising money… I would really appreciate it.  I know you are very busy and have your own life, but I really don’t want to die.  I was robbed of so much because of this disease (eating, walking, becoming a doctor, etc.), and I would really love to get the opportunity to do all these things that everyone else takes for granted.  I never thought that my life would be like this.  I was very smart student in high school who planned to be a doctor, a violinist, competitive figure skater, etc.  I had planned to be a doctor so that I can help others, get married, have a family, etc. However, I was robbed of all this and it would be fantastic if I got a chance again to do this.  

So… If there is anything that you can do, I would really appreciate it.  I have tried so many ways to get help, but none have really worked.  Any help that you can do would be very helpful and much appreciated.

Until Next Time.

Love,

Fallon

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January 20, 2013

ImageHello-

I just wanted to write to let you know that I am on my way to Indiana because of the transplant.  Things aren’t going well at all, as I am stuck at the airport.  So I figured… what better time to waste since I have to kill like 3 hours than to write a little and inform you on all that is happening and let you know the latest.  I am also suffering immensely, so I was hoping that perhaps writing would help me take my mind off the pain since there really isn’t anything else I can do.

Why does it seem that disaster always lurk wherever I go and especially when I fly?  Dad and I seem never to have any luck when we fly EVER.  We are always stuck at airports because of delays and such.  But this time… being stuck in the airport really takes the “cake!”  It has been nothing but pure aggravation here.

What a trip this is already and we haven’t even left New York.  Thanks to my lovely brother, it started the trip off to a wonderful start.  Thanks to him, we had no tickets to fly because the tickets that were supposed to be sent to us never came.  I had to call them on Friday, but due to my brother being his “annoying” self, he caused problems, which resulted in the place that we were getting the tickets from going home.  So, since they were not going to be in the office til Monday and there was no getting in touch with them again, we were out of luck with getting tickets.  We were also waiting for tickets from SOUTHWEST for the trip to California, which we could have used in the meantime because they could have switched the tickets to go to Indiana instead, but those tickets never came either.  It just so happened that the tickets that were designated for California were sent out Friday, and they were coming 2-day FEDEX.  So, we were really hoping that they would hopefully arrive on Saturday since it was “2-days” and FEDEX does work on Saturdays, but Saturdays are not considered “business” days so we weren’t sure if they would come or not.  Of course they didn’t come.

I was not going to buy another set of tickets because we could no way afford them.  I already had 2 sets of tickets coming…. 1 set I missed out on because my brother was being his annoying self and the other set was in the mail and they were for California anyway (so they are still going to be used for that trip).  However, after talking to Southwest Airlines and telling them the situation, they told me to come to the airport and they would acknowledge the tickets were supposed to be given and I would be able to get to Indiana.  However, disaster only seemed to follow.

When we got to the airport, it was total disaster.  We purposely took a morning flight out because we thought it would be easier on me and it would be less crowded.  We thought it would have less chance of letting me catch an infection because I am so susceptible to any little cold or illness since I have no immune system.  Plus, I am at my “best” in the morning and as the day continues on, I quickly deteriorate and by 3 O’clock… I am basically a “goner.”  Anyway… all that careful planning was wasted because here I am stuck at the airport.

Originally, our flight was supposed to leave for Indiana at 6:50 in the morning, which would have made us arrive at 1:50 PM.  It was the first flight into Indiana even though we had a stopover in Orlando.  Why we had to go all the way south to Florida to then go all the way North again to Indiana is beyond me, but that is what the route was.  Anyway… I am now stuck in the airport til 11:00 AM and our flight won’t arrive now til 5:00 tonight.  I am definitely going to be suffering tonight because like I said before, as the day progresses, I quickly deteriorate and traveling takes a lot out of me as it is. Therefore, between the traveling, not eating (I can’t eat because we are on a plane and I have to be near a bathroom and such), and the time of day that we are arriving… I can just imagine the state that I am going to be in when we arrive in Indiana…. Especially when I am suffering so much now because I am so very sick and with the weather being the way it is in Indiana, because it is so very cold and I can’t tolerate it since it really makes my illness worse.  In addition, what I went through already with security here really made everything worse already, as well as it was even the security’s fault that we ended up missing the plane in the first place.

I know that security is “tight” but come on… have a little decency on someone that is “sick!”  Do I look like a “terrorist” or something?  I even fly with documentation from doctors about how “sick” I am and with all my records to prove it.  I fly with documentation written from doctors that specifically state that I can’t be “touched” because the slightest touch really sends me up the wall and in excruciating pain. This disease is believed to be the result of dysfunction in the central or peripheral nervous systems. Typical features include dramatic changes in the color and temperature of the skin over the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling.

My neurological disease really makes me suffer all the time.  The CONSTANT PAIN can be described as burning pain as if a red hot poker were inserted into the affected area; as well as throbbing, aching stabbing, sharp, tingling, and/or crushing in the effected area (this is not always the site of the trauma). The effected area is usually hot or cold to the touch. The pain will be more severe than expected for the type of injury sustained. This is a hallmark of the disease. Allodynia is usually present as well (extreme sensitivity to touch). Something as simple as a light touch, clothing, sheets, even a breeze across the skin on the effected area can cause an extreme amount of pain to the patient. Sounds and vibrations can also increase pain, especially when they are sharp, sudden, and/or deep. Even the softest touch of a loved one can now cause pain instead of comfort.

Many times I get asked what my disease feels like.  If they are asking what is RSD pain is like in comparison to other diseases you can give the McGill Pain Index answer; “RSD pain is ranked as the most painful form of chronic pain that exists today and is ranked on the McGill Pain Index at a whopping 42!”  It is the most pain I have ever experienced, it hurts constantly.

However, many times people don’t understand how bad I really am suffering because I try to “hide” it. I try and shield them from the depth of my pain.  Many times I just say, “I am fine. It is nothing I can’t handle” when I am asked how I am feeling or what the pain is like.  Once in a great while I may let them know how truly horrible it is, after all, they see it in my eyes. I also sometimes say “I am fine” because the pain is the same today as it was yesterday, and the day before, and the day before that, and the day after tomorrow… so I try not to dwell on it too much.

But… I guess if you had to really say what my disease feels like, I would have to say that you could imagine your hand doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and you knew it was never going to be put out. Now imagine it both hands, arms, legs, feet; well, you get the picture.

I also suffer from Allodynia, which is an extreme sensitivity to touch, sound, and/or vibration. Because of the allodynia, any normal touch causes pain; your clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by you in a crowded hallway, etc. In addition, sounds, especially loud or deep sounds and vibrations, will also cause pain; a school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical movie theatre. Allodynia can be thought of as someone rubbing some salt on top of that hand that had all the skin burned off and completely raw, and then it had some sandpaper rubbed on top of that.

So… We really try to avoid anything touching me at all costs because it really heightens my disease.  My disease not only is notorious for having pain, but for inflammation, spasms, etc.  Therefore, security can be a HUGE problem when we travel because I can’t really be touched!!

Well… due to the heightened security at the airport, it made us miss the plane.  Even though I get priority with going through the Security due to my illness and a wheelchair, they really made it difficult for me to go through this time and really cost us missing the flight.  I bring documentation and records stating about my disease and how I can’t be “touched,” but this security didn’t want to hear of it.  In all my life, I never had a problem like I did today.  Did I look like a terrorist or something?

We got stuck at security for the longest time and all we kept doing was seeing the clock tick by.  We knew that we were going to miss our flight and even though we clearly explained it to them and explained to them the situation, as well as told them about the documentation, they refused to let us pass.  We even asked if they could contact the gate, but they refused to do that as well.  They were just making it very difficult overall.

First of all… there are 2 machines…. the one that you walk through and is like 12 inches in length and then the HUGE machine that takes like 2 1/2 feet to go through in order to go through the entire machine. With that 2 1/2 walkthrough, they make you stand in the center of the machine for like 30 seconds while they body scan you. Well… I obviously can’t walk and walking huge distances are out of the question. But I do make it though… barely, but I make it through…. the other machine since it is only about 1 foot in length and I can literally bring the wheelchair to the entrance and grab the guys hand on the other side while I shimmy through the scanner since I can’t use the wheelchair or crutches to go through the scanner. Well… first off… the security refused to let me through the easier scanner that I always go through. I don’t know why, but they wouldn’t let me. I know… I look like a terrorist, right?

Anyway… they said that I needed to go through the big scanner and if I couldn’t, then I had to be “patted down” and such, which of course is a BIG NO NO because I am so hypersensitive and in pain. Like I said before…with my disease… nothing can touch me! Even the softest touch is so extremely painful to me. So, since I didn’t want to be patted down and they wouldn’t let me through the easier machine, I had no other choice but to go through the bigger and more intensive scanner. However, of course I couldn’t walk through there myself because I couldn’t bring the wheelchair or crutches with me. So, we told them that my dad would pick me up and put me in so I can stand in there for the 30 seconds while they do the “scan!”

Well… of course that wasn’t good enough for them either. It took so much time arguing with them and explaining to them that my dad would just put me in the scanner and I would then be able to stand alone and such. Finally after all that time… they listened. So my dad picked me up and put me in the scanner so that they scanned me. Well… guess what? Disaster only seemed to continue.

When I got out of the scanner, I was certain that things were going to be ok and the worst was over.  After all, I made it through the scanner and how much more could they want from me, right? Well… I was wrong! It turns out that the clothes that I was wearing picked up all these abnormalities on the scanner. My mom and I decided to wear a shirt that happened to have rhinestones on it and everywhere there was a rhinestone, it showed up on the scanner that something “suspicious” was there. So of course they weren’t going to let me go past there.

Time was ticking til the plane was taking off and they said that unless I was “patted down” I was not going to be able to fly. I was like “Are you kidding? I can’t be touched. I have this disease.” I even showed them the documentation and records, but they didn’t care. So of course I had no other choice but for them to touch me. Luckily though it was all above the waist so even though I was sensitive and in tremendous pain, at least it wasn’t below the waist where the pain is escalated a hundred times worse.

Not only did they have to pat me down, but they also took swabs of my hands to make sure I didn’t have chemicals on me.  They really put me through the ringer.  So, you can just imagine how much they started my disease up because I cannot be touched the slightest thing ignites a raging fire in my body. Anything that even slightly touches me will “start” up my disease and autonomic dysfunction.

When my disease “starts” up, there is no shutting it off. So now I am in so much pain and agony. I can’t stand it. I don’t even know now how I am going to manage sitting on a plane for the next couple of hours. They took so much time downstairs though that by the time we got to the gate, the person at the gate said the “flight was full.” I tried to explain to them how I had to get to Indiana because of health related reasons and because I needed to go to the hospital, but of course they didn’t care. I asked if they could possibly ask if someone could “give up” their seat, but they refused to do that as well. So… now I am stuck here at the airport waiting for the next flight out, which is at 11.

So here we are.  Dad and I are sitting in the airport and I am writing to you.  I really am nervous about our trip to Indiana.  I am nervous about the transplant because I know how very risky and radical this transplant is.  After all, only 6 hospitals in the country do it and it has only been done like 35 times last year.  The survival rate isn’t too good either.  The one-year survival rate is only like 75% and the five-year survival rate from the people surviving one year is only like 50%.  So if you think about it… only like 25% of people really make it.  They haven’t really done any of the transplants yet without even a serious complication.  But… I am hoping that as long as I make it through 1 year, 5 years is a long time off and with medicine always changing and advancing the way it is… hopefully something new and more beneficial will come around.

I have really been thinking lately about what is going on with me.  I kinda figured out what is happening.  Basically my body is deteriorating and so are all my organs.  We know for a fact that my organs and entire body is shutting down.  So… I came to the conclusion that my body is just plain worn out and it is time for a “new” one.  I kinda came out to believe that you are just a “soul” and all you do is “rent” out a body for a certain amount of time.  Well… my time with this current body is used up and now it is time for a new one because I wore it out.  Either that… or I need to go in for an overhaul.  I need to have a new engine and parts put in for my body to continue to be able to function.  Basically my engine is almost caput and I need new parts and a new engine before I officially run out of gas.  How do you like my theory?

I am really nervous though because my body is suffering so much and deteriorating so fast.  My grandma went through the exact same thing and she died 2 months later.  I literally watched her go through the exact same things I am going through and in the same exact order, which really scares me because I know where that led her.  Also, this happened to her last year about this time.  I am afraid that history is repeating itself… just one year later.  I watched my grandma stop being able to hold her bowels, to not being able to swallow, to not being able to walk because her legs wouldn’t move and were collapsing, to not being able to talk, to having the most excruciating pain you can imagine, etc.  I am having the exact symptoms.  If I knew how bad my grandma really was suffering, especially with taking her medication because she was telling me how difficult it was to swallow, I would never have forced her the way I did.  Even though I know that it was for the best for her to have the medication, I know firsthand how difficult and horrible it is to have these swallowing difficulties and how nothing… not even medication… goes down.  Even though I was doing my best to keep her alive, I think I was being more selfish because I didn’t want to lose her.

What I did to my grandma about forcing her to do things because I didn’t want her to die, my parents (especially my dad) is doing to me.  My dad even admits that he is “selfish” and doesn’t want to lose me even though it would put me out of my pain, misery, and suffering.  He doesn’t want me to suffer, but he doesn’t want to lose me either.  We all know that if something would happen to me, he would never get over it.  He is the main reason that I keep going.  I know that if something happened to me… he would never be able to handle it.  He already said many times that he would never take care of himself if something happened to me.  He said, “when I die, I am going to hear ‘open the gates…big fat man coming up!’ and I am going to know it is him!”  My dad constantly bribes me and says whatever he can just so I keep going.  I see the pain in his eyes because no matter what he does… he can’t help me.

I am holding on so much for my dad.  Even though I don’t know how much longer I can hold on… I am holding on for my dad.  Even when I really wanted to sign the DNR (Do Not Resuscitate Order) when I went to California and had the operation, I didn’t because I was just about to sign it and I couldn’t because I saw his eyes and I know he doesn’t want me to.  My dad has it planned that if he could have his way, he would have be frozen so that when a cure is found, he could defrost me so that I can live.  If nothing else… I want to live and become that doctor so that he can see me become it.

So… here we are on our way to Indiana.  Even though we are waiting for the 11 O’clock plane, our luggage should be there already because it went on the flight that we missed.

Even though my records were sent prior, I always bring my records with me.  However, I am meeting with the entire transplant team and I wanted to make sure that everyone had a copy.  So, you can never be too prepared. So I ended up printing out a copy for everyone to have.  I didn’t realize how many pages it would be.  Thank goodness I bought another ream of paper because I basically went through an entire pack.  It was so heavy that I ended up packing half below the plane and carrying half.  I usually bring them aboard the plane because I am always afraid of them getting “lost,” but there was no way we could carry them all.  They were just way too heavy.  We figured that the worse that happens… we have half of them and they can make copies.

ImageI also received some lovely gifts from people before I left. I was definitely not expecting it.  It was seriously the nicest thing that was ever done for me.  I got a lovely cake that looked simply delicious.  I did try to have a piece, but due to my swallowing difficulties… it wasn’t very productive and didn’t go too well.  So… I figured that when I get better and I have that transplant, I am going to have one HUGE party and have cakes and everything for everyone.  I am going to invite everyone I know and we are all going to celebrate.  I am going to eat all the cakes in the world and enjoy them.  But it was a wonderful thought to just have the cake and see it.  My dad especially loved the cake because of course he had it!!

ImageI also received a beautiful book and bracelet from an old friend.  I certainly wasn’t expecting it.  Just what she wrote in the card was so very touching.  It is getting harder and harder to function and to pull through… but knowing people care like this about me… it really helps.  It is because of people like this that make me continue on!!

I am also really nervous because I know that after this, the next step is the actual transplant. I am meeting with the whole entire transplant team this week and finalizing everything so all the t’s are crossed and I’s dotted.  After all, you can’t imagine what goes into getting a transplant.  You have to have every test, evaluation, clearance there is from head to toe… even if it doesn’t pertain to the actual transplant.  I have to have everything from psych clearance to cardiac clearance to dental clearance to gynecological clearance (pap smear and mammography), etc.  It’s unbelievable.

However, when I was going through my records to bring last night, I realized I forgot to get one of my clearances signed.  I forgot to get part of the dental clearance signed. But thank goodness for Facebook and the computer because I was able to send it to him and he was able to fax it over to the hospital.  I am just hoping that it is good enough for them and they don’t want the originals right away.

Even though Indiana has a good turnaround rate for transplant, it can take long to get organs.  That is why some people die waiting.  I need a small and large intestine, stomach, pancreas, and liver.  It all has to come from the same person.  I kinda feel bad hoping that someone dies so that I can life, but what else can I do?  I guess that is the way it goes, right?

I am listed as Status 1, which means that I get priority. But that doesn’t mean anything because it can still take long.  It can also take a day or so.  I guess you never know until that phone call comes in.  I am just scared because I still don’t know how I am going to get there when I get the call because that alone is going to cost me $13,000.  They usually want their patients to live within 4 hrs. of the hospital, but they are making an exception for me because it would be too much of a hardship for me to do that.  My dad has the business and for him to not work pre-transplant and not have an income… not only would the business not survive, but we probably wouldn’t survive either.  Even with him working now, we are barely surviving.  We are having a difficult time paying all our bills, paying our mortgage, even putting food on our table.  Our bills and my medical costs are just astronomical.  That is why I am so desperate for support from others because we can’t afford it anymore on our own.  The costs have just become too great and unfortunately without the money… I can’t receive the necessary treatment that I need to survive.  I hate to be a “crier” or a “beggar” but I have no other choice.

What kills me is that I have tried so many different ways to raise money and such, and nothing really has worked.  They worked to some extent, but nothing really major. I have posted flyers, made websites, tried contacting the media and famous people (even the President and Queen Elizabeth because I was so desperate), etc. and nothing has come about.  However, I see other stories in the media and such that are featured and I can’t get the attention that I desperately need.  I know its probably “not what you know, its who you know!’  I found a quote from Benjamin Franklin that that really is a great quote for the world.  He said, “It is only when the rich are sick that they fully feel the impotence of wealth!” I really desperately need help and no matter how hard I try, I can’t receive it.  Even last night… I saw people asking for help or attention on their diseases and disabilities on 20/20.  I certainly wished that I was able to get on a show like that.  But to be honest… I have tried so much in the past and it is at the point that I am so tired and worn out from being sick that I really need someone to “takeover” the reins from me. I can’t really do it anymore!!

Well…  I better be going because we are getting ready to board.  I rented a movie last night and put it on my iPad called TAKEN 2.  However, during our delay here, I went to watch it and there was something wrong with the iPad and as a result, I had to reset my entire iPad.  That meant I had to download the movie again too.  I am using the Wi-Fi connection from my phone and it isn’t so fast.  Therefore, I doubt it is going to make it onto the iPad for this trip to Indiana.  I guess it will have to wait for the return trip home.  Like I said before… disaster happens to strike wherever I go.  They should change MURPHY’S LAW to MIRSKY’S LAW.

I will keep you posted on everything that is happening.  If you can please spread the word though that help is needed in terms of both financial support and prayers, I would really appreciate it.  Anything that you can do… is much appreciated.  Thanks again for always being there to listen!!  Talk to you in Indiana.

Love,

Fallon

P.S. One bad thing about missing the first plane is that I missed out on going to Florida and being in the warm weather for a little bit even though I would be in the airport.  Now I am just going to be stuck in ESKIMO weather!! I made dad bring his scarf and not dress like summertime like he always does because it is only like a high of 15 degrees.  We are going to FREEZE.

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January 17, 2012

ImageHi-

Well figured I would touch base with you because so many things are happening and we are getting closer and closer to leaving for Indiana.  I am supposed to be leaving on Sunday for Indiana, but hopefully that will still happen.  I am rapidly deteriorating and the closer we are getting to Indiana, the worse it is getting.  I am just hoping I make it there instead of ending up in the hospital because at the rate I am going… it is going to be an extremely close call.

 Things are not going well at all. I am rapidly deteriorating.  I never thought honestly that things could get so bad.  It is like all the stuff that I was going through before was “nothing.”  If I thought it was “bad” before, it was “nothing” in comparison to what I am going through before.  I never thought it could get this bad.  I literally spend the entire day and night crying and screaming.  I am literally climbing the walls in EXCRUCIATING pain.  I never felt pain and suffering the way I am feeling it now.  Nothing that I do is cutting it. 

 It hurts so badly and the pain goes from my head down to my toes.  The pain goes throughout my body from the very surface of my skin to the deepest core of my bones. Nothing that I do helps and it stinks. I am maxing out on all my meds and have even “overdosing” just to try to get some “relief.”  But… nothing is helping.  I literally spend the entire day/night screaming and laying on the couch because that is all that I can do.  Not only am I suffering in excruciating pain from the pain itself throughout my body because of the neurological disease/autonomic dysfunction, but I am also getting the most severe stomach pain that is so debilitating that you can’t imagine. I literally just lay there and unable to move.  My brother says I look like a “curled up cat.”  I can’t take it.  It not only knocks me out because of the intense stomach pain, but it feels like I either perforated my intestines or there is a blockage in my intestines are something… which is very possible with what I have wrong with me because with my severe gastroparesis and my “paralyzed”/”dead” GI system, it can easily make my intestines perforate or have an obstruction.

 In addition to the pain and such, I am also having a huge amount of trouble breathing.  My heart is also bothering me.  Not only am I having difficulty breathing and such in general, but when I also cry and scream… it makes it even harder to breathe.  I had my bloods taken and they came back not too good.  Not only have my bloods further dropped so that I am at further risk of having cardiac arrest and an arrhythmia, but I also have developed an additional problem now.  My clotting factors are now off in addition to all the other problems that I have had in the past (the bloods dropping, the high amylase level, the organs shutting down, the pituitary gland secreting too much prolactin and such because of the tumor, etc.)  It appears that my clotting factor is too high and therefore, it is difficult for me to “clot.”  This is definitely not a good thing especially when I am going to be going for a transplant. 

 With not being able to clot and such, it could be the reason why I am producing more mucous and blood.  I am bleeding internally from somewhere, but the doctors can’t figure out where it is coming from.  Unfortunately I keep producing tons of blood and mucous from below and it is at he point where it is getting to be nonstop.  Every time I go to the bathroom, only mucous and blood come out.

 I have also been having problems with “blacking out.” I don’t know what is up with that.  It is really freaking me out because I don’t know what is causing it.  I can’t say it is from “getting up” to fast because even when I get up so very slow or even sit for awhile before getting up, I still end up “blacking out.”  I will literally get tremendous pressure in my head, especially on my right side, and I won’t be able to see for a couple of minutes because it will be totally “black.”  I have no idea what the cause can be, but it is really freaking me out.

 I have really been suffering with pain in my stomach and it feels like I have a perforation and obstruction in my intestines.  With my condition, it is very possible.  In fact, the doctors are very scared that my intestines are going to “twist” because of all the pressure that the air in me is exerting and if that would happen, it would be a real emergency because that would really kill me immediately.  However, I have noticed lately that when I take my injections in my abdomen, it has been getting more and more difficult.  Not only is it getting more and more painful, but it is also getting harder and harder to inject because there is getting more resistance.  I never felt pain like I have been getting when I have been injecting lately.  I wonder if it means anything between the pain and the resistance.  It just so happens that where I inject also happens to be where I feel where the blockage/perforation is located, so could it mean something?  I just don’t know.

 I have also been having a great deal of trouble swallowing.  I can’t swallow anything… even the littlest that I was swallowing before.  When my grandma was telling me how she “couldn’t swallow her pills” and was complaining so much before she died, I always pushed her to do things like to take her pills and such.  But if I knew it was this bad… I probably would never have done it.  It is really horrible. My mom stays with me while I take the meds and such, but it can literally take me ½ an hour to take my meds because I can’t swallow them.  To think… I take over 50 pills a day and I don’t just take pills once either.  My day is just horrible and full of suffering.  Between the pain, swallowing, vomiting, etc. I never get a moments rest.  It is just getting to be impossible to function or even survive.

 Also, the discoloration is getting worse as well.  Even though I turn colors because of my neurological disease/autonomic dysfunction, the discoloration is getting so much worse.  I am like a chameleon because I am constantly changing colors depending on the time of day.  I can easily go from a very “normal” color to purple or black in a matter of seconds.  Of course my left leg and foot are the worse.  However, the discoloration has been getting worse in the sense that it has become even “blacker” than before.  The doctors have already said that even if my neurological disease/autonomic dysfunction was cured, they don’t know if my foot/leg (especially my left) could be saved because so much tissue has already died.  But with the leg and such turning blacker than usual and me feeling worse in general, I don’t know if all this stuff is all incorporated altogether.  You know?

 The pain is so intense and there is nothing that can be done. I keep telling my dad to knock me out.  I keep telling him to treat me like a punching bag and hit me as hard as you can so that they will KNOCK me out. I told them “not to worry about killing me because punching bags always come back up!”  But of course my dad won’t do that.  I am suffering so very much.  My dad wants to take me to the hospital, but of course I don’t want to go.  My dad is so fearful of something happening to me, and in his mind… nothing can happen to me if I am in the hospital.  However, he doesn’t realize that the hospital (especially the ones around here) are not always the best place for me even though the doctors have even told him directly that the hospitals aren’t really the “answer” and such.  The doctors have even told him that if I were to go to the hospital, I would need to go to a hospital that would be able to handle my complex disease, which would be probably California or Indiana, but even that isn’t necessarily the “answer.” Doctors don’t really like to have me in the hospital because diseases and infections lurk there big-time, especially with the flu going around. I have no immune system and therefore, I catch everything.  Even when I go for surgery or something, doctors like to get me out of the hospital ASAP because they don’t want me in the hospital since I am so susceptible to everything.  If I catch anything, I am in HUGE trouble because the slightest cold is like getting the FLU to me and can easily kill me.

 Even though I know that the hospital is probably the best place for me, I know that it isn’t the answer.  I know that I probably will get sicker there because of all the other infections that are lurking there.  Plus… we are supposed to be leaving on Sunday for Indiana and we would never be able to go if we end up going to the hospital. I came to far now to end up missing it.  It is way too important to go to Indiana because my transplant depends on it.  I am supposed to go to Indiana on Sunday for the finishing aspects for the posting of the transplant since I need a multivisceral transplant ASAP and without it, I will surely die.  I need a new stomach, pancreas, small and large intestine, and liver.  Hopefully after my trip to Indiana, the call won’t be long after that the organs are available that I will be able to have the transplant.  After all, I am desperately running out of time.

In addition, I really can’t afford to go to the hospital really either.  I would hate to spend all that money to go to the hospital and then have to pay that money again when I go to Indiana. It really stinks how money rules the world.  I mean… I would love to go to the hospital to get some pain relief because nobody should suffer in pain.  However, just going to the ER will cost me $200.  Then if they do any scans or radiology, which we know they will because I am suffering, it is extra.  Each scan is $100.  Plus… if I go for any procedure because scans don’t always detect everything and I am sure that they would want to do an endoscopy and such (especially with my history), it would cost be another $150.  Then if I am admitted, which would probably be guaranteed because of my declining health, it would cost me $150 a day in copayment.  So, as you can see… it isn’t so easy to just “go” to the hospital.  It would really rack up the bill if I would go.  It would also stink to go to the hospital especially since I am going to Indiana so soon because they are going to be doing all these tests anyway.  So that means that I would have to pay for them twice.  I can’t even afford them once… let alone twice.  So I am just hoping to save the money for Indiana. 

Since things are getting so very bad, the doctors are thinking about putting me into an emergency ketamine coma tomorrow (Friday).  However, we don’t know if it is the smartest thing to do because it might interfere with going to Indiana since we leave on Sunday and ketamine can interfere with my entire body. Since I will be having a lot of evaluations/tests/clearances, we don’t want the ketamine to change or jeopardize the transplant.  It is important for the doctors in Indiana to get an accurate picture of everything that is going on and for the ketamine not to “mask” anything that is going on because the transplant is so very radical and dangerous.  I need all the surgeons to get an accurate picture of what my body is like so that they know how to “treat” me because its like life/death when I go for this transplant.  It is a mega surgery that is like a whole day’s worth of surgery.  They will literally be “gutting” me and removing an entire system.  There hasn’t been one transplant done that hasn’t had a complication.  The survival rate isn’t too good, and the one-year survival rate is only like 75%. From that 75%, the survival rate for 5 years is 50%.  So, if you factor in all the numbers, the overall survival rate isn’t too good after transplant.  But, I have no other choice but to get the transplant because without it, I will surely die soon.  My goal is to get the transplant because medicine is surely changing and in 5 years, who knows what medicine will be like?  It can be totally different and there can be something else that will make me live longer. You know?

 Ketamine is an NMDA receptor and even though it will be tremendously helpful in benefitting me right now because I am suffering so much, we don’t know if it is the “right” thing to do.  It will definitely give me a day free of pain and hopefully make me able to “function” better, but it could really make things worse in terms of the transplant.  When I go for the ketamine, it also changes the way my body functions.  It works on my autonomic dysfunction and nervous system and therefore it can really make a difference in the clearances/transplant evaluations. After all, the doctors have me going for every test/evaluation that you can imagine so that they can get an accurate picture of me and know what they are dealing with.  It would be pointless to get the ketamine so that it will change something.  What would be the sense of having all those tests then, right?  I am getting tested from head to toe… everything from psych clearance to a pap smear to a mammography to stress tests to liver biopsies to colonoscopies to more. 

 So, we are waiting to hear what is going on.  The doctors are having meetings and trying to figure out the best thing to do.  I have the best transplant team in Indiana because not only is he the nicest doctor and always gets back to me, but he tries to make sure he is on “top” of everything. Even though we asked him if I could go for the ketamine coma, he wouldn’t give me an answer until he “discussed” it with my doctors.  That shows he is a good doctor because he wanted to know all about it and cover all his bases before making a judgment and such.  He wanted all pieces of the puzzle before making a decision because he didn’t want to make the wrong decision.  He wanted to know exactly what he was dealing with when I go for the ketamine coma here in New York. 

 Most likely I will probably be going for the ketamine coma on Friday, but we aren’t 100% sure.  I am having a meeting with the doctor later today, so I will know for certain today. 

 Well… I am getting ready to leave for Indiana on Sunday and I am so very scared.  I am so very scared for the transplant and so scared of dying, but I am more afraid of remaining the way that I am.  I really am suffering and I don’t know how much longer I can hang in there.  My dad has been staying awake with me all night.  The meds knock me out for a little bit to take a brief catnap for about an hour at the most, but that is about the most sleep we get.  I have even found sleeping on my dad’s belly helps.  I guess sleeping with him makes me feel “safe” or something and it makes me feel more at ease.  One time when I fell asleep on his belly, my dad was like “you are so light I didn’t even feel you. You are lucky I didn’t think you were a fly and hit you!”

 ImageMissy has been babysitting me and won’t leave me alone.  She always knows when things are bad.  It’s amazing how pets can tell.  Whenever I am worse than usual, she always stays with me and since I have been doing so horrible, she won’t leave my side.  She will literally follow me everywhere… even when I have to go to the bathroom… only to follow me back to bed afterwards.  Its amazing the bond that we have.  She even stays on the computer all night with me and is my “partner-in-crime.” I never met a cat who loves to be on the computer.  She just loves watching me be on it.  It is really something.  If I didn’t have her, I don’t know what I would do.  I am going to miss her so very much when I leave on Sunday and especially when I leave for the transplant because I will be gone for so long.  When I have the transplant, I will be gone for about 2 months.

 I am so scared about how we are going to manage the transplant.  We don’t have the money and I don’t think we are going to be able to honestly pull it off.  My parents say that they are “not going to let me die,” but I tell them to “just let me go” because it would be the best for everyone.  I am really causing a lot of problems and in the whole scheme of everything… it would solve a lot of problems.

 My family has really been suffering along with me and if I moved on, at least they would have their life back.  I can’t thank them for all that they have done for me because they have literally given up so much for me.  They have totally given up their lives for my illness and me and they certainly don’t deserve that.  They deserve better.  They can’t do anything!! They can’t go on vacation, afford new furniture, or even go out for dinner.  Their lives center on me and it isn’t fair to me. They are in such financial debt because of me and they should definitely be at a time in their lives where they should be enjoying themselves.

 In addition, the bills are astronomical.  We have such financial debt that it isn’t even funny.  We are having even difficulty paying the mortgage and putting food on the table.  I never thought in my life that things could get this bad.  I really wish I could make it better for them.

 I told them to “let me go” because they don’t deserve this.  I wish they didn’t have to “suffer” like this.  If I wasn’t here… they wouldn’t have to worry about suffering like they are currently doing.  In addition, I would be out of my suffering as well.  I am suffering so very much and to be honest… I don’t know how much more I can take.  I have to admit, the journey lately has been even more difficult than before.  As I am deteriorating rapidly, I am getting sicker and sicker. I never thought that I would ever become this ill.  Yet, the irreplaceable heartiness, love and support of my family are the sources of my strength.  They enable me to continue on.

 I really don’t know how we are going to afford this transplant and my parents know it.  But they keep saying that they “aren’t going to let me die.” Their business is really suffering as well and when I do get the transplant, I know that the business will never survive because my dad won’t be able to be there for 2 months. Without him being there, no work will really be able to go out and we won’t be able to even take home an income.  With having no money already, how are we going to manage then?  If my parents lose the business because of me and the transplant or the house, I would never forgive myself.

 Even though they don’t want me to “die,” I really don’t know how they are going to afford treatment and the transplant.  Everything is maxed out including all the charge cards and we are unable to get any more loans. I know that if they could afford treatment… they certainly would.  But even though they would if they could… I don’t see how they are going to be able to.  I know that they wish they could, but I don’t foresee that happening.  I just think that they are hoping that something turns around or something because they don’t wanna lose me. 

 We have tried so many things to get help and yet… nothing has been productive really.  I am severely deteriorating and we are literally pleading with people for help and yet… nothing is working.  We have tried numerous ways to get funds and such, but nothing really worked.  We tried posting on Facebook, making a website, contacting the media, contacting talk shows, contacting famous people (even the president and Queen Elizabeth), making flyers, etc.  It is so unfair that we can’t get media attention despite how many times we tried.  Yet, there are so many other people who get media attention and here I am dying and desperately need it and can’t get it.  I guess it is like the saying goes… what you know… it is who you know!”  We desperately need help and yet… no matter what we do… it just isn’t working.  We appreciate the little amount that people are donating from the bottom of our hearts and such, but in reality… it isn’t going to help in the overall picture.  But of course… any little amount helps.  Every $1 makes a difference. 

 We need so much money in order to afford treatment.  To continue treatment, I have to be able to afford the costly medications, copayments, traveling expenses, surgeries, ketamine comas, etc.  Copayments in general cost us over $30,000 a year from our pocket and that is with insurance paying for things.  We still have to worry about all the meds and appointments that aren’t covered by insurance.  Since I am constantly traveling to Cali and Indiana because that is the only place that can help me, we desperately need traveling expenses as well.  When the transplant becomes available, it will cost us $13,000 to get us down to Indiana.  We don’t know how we are going to pull that off.  Then we will have to be living there for 2 months without an income and therefore, we will need money to live off of (which we don’t have).  In addition, I need a costly ketamine coma that is not covered by insurance either in addition to this very expensive transplant.  There just doesn’t seem like there is a light at the end of the tunnel.

 I am still hoping that perhaps things will turnaround. My birthday is quickly approaching, as it is February 7th.  The doctors already told me that if a miracle isn’t found, I will definitely not see my next birthday.  I am really hoping for my birthday wish that get my miracle or at the very least that I get the “help” that I need to at least get my “chance” of living.  I really have so many plans that I never got a chance to do yet.  I was robbed of so much because of this illness and I want it back.  I want to be able to get married, have a family, and become a doctor.  But… of course that won’t happen unless I get better and that is all dependent on treatment, which of course is dependent on the money issue.  It is a shame how everything revolves around money.  I truly wonder what this world would be like if money didn’t exist.

 I am hoping to be around for my birthday and perhaps get the transplant after my birthday.  Since I am so very sick, I would like to at least spend my birthday with my family because this very well is probably my last birthday and I want to celebrate it with them.  Plus, if I have the transplant beforehand, I won’t be able to be with my mom because my mom won’t be at the transplant because of funds.  Only my dad is going to be able to be with me.  So, I am hoping that I receive the transplant right afterwards.

 I am also supposed to be leaving Feb. 2nd for Cali because they want to put me into a ketamine coma to try to “buy” time because without it, I am not going to make it.   They will put me into a coma for a few days and try to “buy” me this time and while I am in the coma, they will put tubes in me and such to try to “build” me up.  But everything is dependent on the transplant and such.  So I will keep you posted.

 In the meantime… it appears we are off to Indiana on Sunday.  We are going to literally FREEZE there.  I can’t believe how cold it is going to be there.  It is only going to be a high of 14 degrees there.  I told my dad that they are going to have to literally pull me out of the plane and use a crowbar to ply me out because it is going to be soooo cold.  I hate the cold weather.

 ImageI am so scared for Indiana.  I can’t believe it is only in a few days.  I dread going because I don’t have the energy to go.  I just hope that I will make it there because it takes so much out of me to go in general.  But with me feeling the way that I have been lately and rapidly deteriorating, who knows what is going to be the answer.  I just hope that I don’t get sick because of all the infections and flu going around. They brought me a mask to wear so that I won’t catch anything. 

 So this is it… finalizing everything for the transplant.  I will def keep you posted as to what is going on.  My dad was funny because he was like “how are we going to get to Indiana in 4 hours when the transplant becomes available even with the plane coming and such?” The doctor was like “You know when you have a bag packed when your wife is pregnant so when her water breaks you have everything ready to go?  Well… same principle!!”  Only my dad would think of something like that!!

 Thankfully I will have my dad with me when I go to Indiana because I know that nothing “bad” can happen when my dad is there.  I have the best dad in the world and I am so thankful for everything that he has done for me.  I am so scared that something is going to happen to me because I know that if something does… he would never survive.  He already keeps bribing me to keep me going!! He even tells me that when I die, I am going to hear “open the gates wider… big man is coming up” and I am going to know it is him coming because he is going to eat himself to death.  I am always taking care of him and making sure he eats right and takes his meds. He said that if anything happens to me, there isn’t anyone going to be able to do that.  Like he really needs someone to hold his hand to do this for him, right?  He can do it.  But… he is just trying to say anything to keep me going because he doesn’t want to lose me!! He even admits it!! 

 Can you really blame a parent when he’s trying to do something to you because he LOVES you so very much and doesn’t want anything happening to you… yet, it only means you suffering so very much? I say to my dad, “Why are you doing this because I am only suffering and it’s only making me suffer more? You are being selfish!” My dad responds, “Yes… I am selfish!! I don’t wanna lose you!!” At the very least, he admits it!! So how can I still be so very mad at him for what he’s doing even though it means me suffering so much more? If something happened to me… my dad would never be able to recover!!

On a better note, I recently saw the movie LES MISERABLE.  What an awesome movie. I normally don’t rave about movies, but this movie was outstanding.  It was simply amazing.  I have also been trying to keep myself busy by playing games on my iPad and doing some reading.  I am still reading THIS IS WHERE I LEAVE YOU by Jonathon Tropper, but if you have any other ideas of something to read, please let me know.  If you have any good iPad/iPhone games… please let me know too because I need something to keep my mind going.

Well… going to go and rest!! I will keep you all posted.  As Eleanor Roosevelt once said, “We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face… we must do that which we think we cannot.”  So I just gotta do this and go to Indiana because I have no other choice.  I just don’t know honestly how much longer I can hang in there.  Just hoping that I will get my birthday wish of getting enough money to continue receiving treatment so that I can have the ability to LIVE!

Love,

Fallon

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January 10, 2013

ImageHey-

Well 10 days and counting til Indiana.  I am starting to sound like THOMAS from the “Little Engine that Could.”  I just have to keep saying, “”I—think—I—can, I—think—I—can.”

Things are getting progressively worse.  All Dad wants to do is to get me to the hospital already!  I know I don’t belong at home because things are really bad, but I just don’t wanna go to the hospital either.  I don’t wanna spend whatever time I have left in the hospital and plus… going to the hospital isn’t the answer either.  Even my doctors from California and Indiana prefer me to stay out of the hospital as much as possible.  If necessary to go to the hospital, I need to go to a hospital that is able to deal with my complex illness and me.  Therefore, even if I had to go to the hospital, these hospitals around my house aren’t even the hospitals that I should be going to.  I need to go to California or Indiana because they are the ones able to deal with me.  I am so fragile and my disease is so complicated that the wrong move can really make a difference and KILL me.

Doctors don’t like to keep me in the hospital.  Despite people thinking that hospitals are the BEST place to be because they can help you, the doctors don’t like to keep me in the hospital because of my immune system and because there are so many infections and illnesses looming in the hospitals.  Even when I go for surgeries, the doctors like to get me in and out as soon as possible.  I have no immune system and catch basically everything.  Due to my illness, everything I get is always ‘magnified’ and since I am so hypersensitive, the simplest thing is such a major deal.  A simple cold is like getting the flu to me, so you can just imagine what its like when I get sick… especially now when everyone is getting sick with the flu or something like it.  I have no defense mechanisms so if there is any little bug out there… I am surely going to get it.  Plus, when I do get something… I can easily die from it.  I can’t overcome it like a regular person because my body doesn’t’ recover very easily.  I don’t have any reserves and my body is very weak.  Plus… I don’t have a lot of medications or antibiotics to choose from to help me because since I take so many pills already (like over 50 per day), everything interacts with everything and therefore it really limits me.  You should really see what the doctors go through when I get sick and they have to try to figure out something to give me to help me get better.  I am really their worst nightmare. 

I haven’t been feeling well lately on top of everything else.  With the weather being the way it is and everyone else being sick, I am also sick.  So… on top of my usual illnesses, I am battling a cold/virus.  It really knocks me down because like I said before… I am really hypersensitive and the simplest thing is a MAJOR thing to me. I am having a lot of mucous in my lungs and it is really difficult to breathe among other symptoms.

I really have to get better and better soon because I leave in 10 days for Indiana.  Flying and traveling are hard enough on me as it is, but when I am sick… it is literally going to be impossible.  I can’t miss this appointment because I need this transplant so very badly and time is really of the essence. I am rapidly deteriorating and each day is very crucial.  It is at the point that I am hanging on barely by a thread and we never know from one day to the next what each day is going to bring or if I am even going to make it.  So… I really need to get better and better fast so that I will be able to go.  Plus… if I don’t get better, I won’t be able to get the transplant because they won’t give me the transplant if I am considered ‘sick’ with a virus/cold.

When my grandma was getting so very sick, I used to push her and push her to do everything including taking her meds.  Right before she passed away, she always used to complain about how she “couldn’t” take her meds.  She complained about swallowing and I used to force her to take them all because I knew how much she needed them and how important they were.  However, now that I am going through the same thing, I know now how hard it really was on her and how much she really was suffering.

I can barely take my meds anymore.  I can’t swallow.  I have severe autonomic dysfunction and my esophagus just doesn’t want to swallow anymore.  I take over 50 pills daily and it is getting to be impossible.  I do take injections as well, but unfortunately, all my meds do not come in an injectable form. So, I have no other choice but to swallow them.  Plus… even injections aren’t so great for me because not only do they cause me tremendous pain since I am so hypersensitive, it really has the potential of spreading my illness as well.  A simple needle stick is like someone sticking a knife in me.  Plus, my disease spreads through ‘trauma.’  The most innocuous touch to a normal person such as a ‘pat’ or something is really traumatic to me.  Of course the more traumatic the event… the more potential of the disease spreading.  So, even though a needle stick isn’t really considered ‘traumatic’ in comparison to surgery or anything, it still has the potential of spreading my illness.

I really can’t swallow them though.  It has been giving me trouble for a while, but I was always able to make do.  I found ways such as taking them with “carbonated soda” to take them because the carbonation helped get them down.  However, nothing at all helps now. My mom has been staying with me though and helping me because I can’t do it alone.  She literally can spend like 20 minutes with me trying to get the pills in me.  It is so very difficult. I am so thankful for all that she is doing for me.  I can’t thank her enough.  I don’t know though… even with her cheering me on and pushing me… how much longer I am going to be able to swallow the pills.

Speaking of meds, I am having trouble with my morphine because I am on such a high dose. I need to take 180 mg. of morphine and since they don’t come in that high dose, I really need to take two 90 mg pills.  They are time released and therefore, they come out at certain intervals but they are coming out of both pills at the same time.  Unfortunately, the insurance company won’t allow me to have that though.  They will only give me a 90 mg, 60 mg, and a 30 mg.  Even though it still comes out to 180 mg, it is being released at intervals out of 3 pills.  So until the 30 mg is used up… I am basically being overloaded with morphine because I am getting the same amount that I am supposed to get out of 2 pills out of 3 pills since they are time released.  You know what I mean?  So… since they are coming out of 3 pills, the morphine has been overdosing me and causing even more problems.  When we tried explaining this situation to the insurance company and why we need to have two 90 mg pills instead, they still refused to give me the pills.  I can’t even afford it on my own because it will be over $1000.  So, I am really suffering and risking my life every time I take the 3 pills.

Nebraska has also been calling me to find out if I am coming to see them.  I am like a “trophy” to be won.  I hate it how doctors like to claim me and keep me… even when they know that they can’t help me because they know that if they do “help” me, they have it MADE.  They will be written up in all the journals and everything if they help me.  So, doctors don’t like to give me away because they are hoping to have all the glory for themselves. 

I hate how doctors would rather keep me than send me to someplace that I am better off going to.  Even though Nebraska doesn’t do multivisceral transplants, they keep calling me to come to see them.  They do intestinal transplants, but what I require is a multivisceral transplant that incorporates receiving a new stomach, large and small intestine, pancreas, and liver.  However, even though they know that I am probably better off going someplace else, they are willing to do the transplant on me and for me to be the ‘first’ one.  Even though my transplant is very rare to begin with as not many cases are done (only 6 hospitals perform this operation and only about 1-2 cases are done per hospital), I still don’t want to be the first or be treated like a guinea pig.  Plus, the head surgeon that was one of their TOP surgeons left in the past couple of months as well.  So why would I want to go there? 

So… I have decided to go to Indiana because Indiana is the best place for me.  Out of 35 cases that were done last year, Indiana did the most.  So, I am hoping that I will get the best care from them and it will be very successful.

However, getting a transplant isn’t a easy thing.  So many things go into getting a transplant.  I have to have all these tests, shots, vaccines, evaluations, etc.  They are like never stopping.  Between the shots and vaccines, my body is really acting up.  A transplant is very hard on your body. For many people, transplants can mean a cure, but complications can lead to death in some cases.

We also have been working on the plane arrangements because when the call comes in, I will only have a certain amount of time to get to Indiana.  As a result, I will have to have a private plane take me.  It is going to be very expensive and I don’t know how we are going to afford it.  But to be honest, I don’t knowhow we wouldn’t be able to do this because otherwise we would have to live there beforehand and we can’t really do that either. 

It could be a long time before I get the transplant and for us to live there beforehand, it would really be hard on us.  My dad wouldn’t be able to work and therefore, we wouldn’t have an income and my dad’s business wouldn’t be able to survive.  We already don’t know what is going to happen post transplant because I will have to stay there for like 2-3 months and my dad won’t be able to work. We can’t afford to do it before as well.  So… we are trying to find a plane company and such to take me when the time comes that the transplant is available because we have to have it all in writing and all set up when we go to Indiana in 10 days.  They normally have all their patients living within 4 hours of the hospital so when the call comes in they can get there quickly, but they are willing to have me live at home as long as everything is set up in writing and such.  I just hope this all works out, but we are looking at another $14,000 just for the plane.

I feel really bad because while I am hoping to live, I know it entails someone else dying. Due to my size, it can even be a kid that dies because they said that it is very possible to get pediatric organs in me.  My dad said that I shouldn’t feel bad because they would have died either way, but I still feel really bad. 

I have also spoken to my team in California lately.  My GI team in California is very interested to hear what is going to happen in Indiana because they said they are very scared for my life.  They know time is really counting down.  So… when I go to Indiana, they want me to call them from there and they want me to tell them everything.  They are such an amazing team.  I wish they were doing the transplant, but unfortunately they aren’t going to be in Indiana.

I am also headed to California Feb. 2nd because I am supposed to be put into a ketamine coma during the interim that we wait for the transplant.  So, I only have a little time between Indiana and the time we leave for California to rest and recuperate because traveling takes so much out of me.  I need to go to California to have the coma because I need something in the meantime while we wait for the transplant.  Even though IU HEALTH has a short turnaround rate for the transplant and we are hoping that I get the transplant fast, it could be awhile.  So… since I don’t have time to spare… they are planning on putting me in a ketamine coma to buy some time.  It is also supposed to help my underlying neurological disease.  Never a dull moment right?

So… I have some busy times ahead.  I really hope that things work out because the doctors have already said that if a miracle doesn’t happen, I am not going to make it much longer.  I really want to see my next birthday.  My birthday is this coming February (the 7th) and I really hope I get to celebrate it at home with my mom.  But I don’t know between all the trips and everything if that is going to happen.  I am just crossing my fingers that I will be alive to see it because at this rate, we don’t even know if that is going to happen since I am deteriorating so rapidly.  I am bleeding internally, I feel like I have a blockage and perforation in my intestine, etc.  Yet, the hands are really tied until I receive the transplant, which are not in my hands.

I am also really losing weight too.  I have this teddy bear that I sleep with on my bed and my mom keeps joking around with me that I can probably wear its jumper.  She probably is right.  I only weigh in the 60s, so I don’t really have any weight that I can afford to lose.  I am really hanging on by a thread.

Well… I gotta go.  I am not feeling well and going to rest.  My birthday is coming up and I only have one wish…. To get better.  But… I know that is kinda out of my hands.  I know that without treatment, I am never going to get better and I know that my family can no longer afford it as well.  Therefore, If you can do anything to help facilitate my wish to be able to receive enough funds so I can receive the transplant, surgeries, and continue treatment… I would really appreciate it because I desperately need help since we can’t do this alone anymore.  I have tried in the past to raise money, but I am too weak and sick at this point to do it anymore. If you can do anything or spread the word that HELP is needed, I would really appreciate it.  I really need someone to takeover the reins for me because it is at the point that I just can’t do it anymore.  My body is just too weak.  If nothing else, please say a prayer for me because prayers can be powerful also.

Thanks again for all your help.  I really appreciate it!!

Love,

Fallon

 

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January 5, 2012

ImageHey-

Just wanted to write a little update as to what is going on since I kinda have a lot going on at one time.  Plus… I am literally climbing the walls in pain tonight, so I am trying to keep my mind busy and off the pain. 

I know that I wrote yesterday and told you a lot of stuff that was going on.  Well… like always, more stuff has happened today.  Gosh… never a dull moment in my life.  My life is like a “soap opera” because there is something always going on.  I think that if I said that my life had absolutely nothing going on… then there would definitely be something to worry about. 

I also can’t sleep, which is not out of the normal. Unlike “normal” people, people afflicted with my illness are prone to insomnia and do not reach REM sleep; this is the healing sleep our bodies need each day. We either wake often or are in a drug induced sleep. When we do wake, it is often physically painful to actually get up and out of bed. So, why don’t we sleep? It is because our illness causes changes to the Limbic System of the brain. The limbic system is that part of the brain that controls insomnia, short-term memory, concentration, irritability, ability to find the right word when speaking, and much more.

I just want you to know that when I write these updates. It is not just to receive “pity.” I write these updates because I need help and because the alternative is to sit and do nothing, letting my body get worse and my mind waste away. Unfortunately, many people see me when I am “out” as “normal” because my pain is invisible. What they can’t see is the pain, mental and physical, I am pushing down just to be “out” as well as the price we will be paying later that day and night. Please understand that I am not playing a pity card. I am just trying to share what a day is like, as well as a way of hoping that someone might be able to reach out and help me. 

Things are getting horrendous here.  I really need a MIRACLE and a MIRACLE soon. I really don’t know how much I am going to be able to last anymore.  You know things are bad when I am contemplating going to the hospital because you know that I never do that.  I absolutely HATE hospitals.  I am petrified of them.  I know it sounds strange considering the fact that I have been in them so many times, but I just can’t stand them.  I used to be able to tolerate them and they didn’t bother me at all.  However, the more that I am in them, the more scared I am of them.  I literally shake when I have to go to them.  I really don’t want to be admitted because I know that I don’t have that much time left and I don’t want to spend my remaining time in the hospital.

I know that once a hospital gets their hands on me, it isn’t going to be so easy to leave.  I have so many things wrong with me and therefore, I know that if I go to the hospital… they are going to admit me automatically.  I mean…. Who wouldn’t?  I am underweight because I weigh only in the 60s, I can’t really keep nutrition in me, I am in organ failure, I am bleeding internally, I have organ failure, I have aspirations in my lungs, etc.  There is so much wrong with me that no good doctor would be able to release me.  Plus… I know honestly that there really isn’t anything the doctors can really do for me, especially at the hospitals in the New York area.  If anything, I would have to go to a hospital that is able to deal with my complex medical condition, which is in California or Indiana or something.  There are only like 6 hospitals in the country really capable of dealing with my condition, as there are only 6 hospitals in the country able to do my transplant.  Therefore, it isn’t really like I would benefit being admitted in the New York area anyway because they wouldn’t be able to “help” me so much anyway.  But… just because they can’t…. it doesn’t mean that they won’t try and it doesn’t mean that they won’t keep me.  They won’t release me so easily because they know that if they do, I probably will only die.

I probably will die no matter where I am… whether I am in the hospital or at home…. Especially if I am in the hospital in the New York area since they aren’t able to deal with me.  Therefore, since I am rapidly deteriorating that time is of the essence, I really don’t want to spend whatever time I have left in a hospital.  I really want to spend it at home with my family and enjoying whatever time I have left.  You know?

So… for me to actually be contemplating going to the hospital, I really have to be in BAD shape.  Nothing I have done tonight is making a difference in the pain.  I am literally climbing the walls.  I have maxed out on all my meds and nothing is helping.  I am literally screaming in agony.  It has been one bad night overall.  It just continues to get worse and worse.

I take so many medications pills that you think it would make a difference in the pain and such.  However, all I do is continue to suffer.  I take over 50 pills a day, which include morphine, methadone, dilaudid, nucynta, etc. and yet… I am still in horrendous pain.  If I am in this much pain with all these drugs, I don’t want to imagine what my life would be without them.  I always make a joke calling my self a “druggie,” but contrary to some people’s opinions taking a pile of medications does not make me a  “”druggie.” A druggie may be someone’s idea of a person who takes drugs for recreation. A pain patient is someone who takes medication because he/she has no choice and who probably cannot fathom someone who takes narcotics for “fun and/or recreation!”

I can’t start my day without medications, which is the first of taking them many times throughout the day. To “look fine” I take over 50 pills. There are the side effects of those medications to deal with; upset stomach, drowsiness, constipation, headaches, and many others.  Understand that these pills do not take all of the pain away. They just enable me to get up, move around, and have some semblance of a “normal” life; they simply allow me to function.

I also had a really bad attack tonight.  The days and nights are getting worse and worse and the really bad attacks, which is when my stomach really acts up with debilitating pain and such that all I can do is basically curl up in a ball on the couch and cry and hope that it passes is getting more frequent and worse as time passes.  I had a really bad attack tonight right at dinnertime, which forced me to miss dinner.  I couldn’t even sit at the dinner table with my family.  All I could do was lay on the couch and cry.

No one really had a good dinner tonight because they were so very worried about me.  You know things are bad when my brother actually misses dinner and stays with me on the couch as well.  He said I looked “so bad and like a cat curled up in a ball.”  He was really nervous.  All he wanted to do was rub my back and touch me, but I just didn’t want to be touched.  It hurt way to bad and with my hypersensitivity to pain, I just can’t be touched.  I hurt all over and everything is magnified for me.  Even the lightest touch sends me screaming because of the pain being so intense for me.  It must stink for my family to have to sit back and watch and know that their hands are tied because they can’t do anything… not even rub my back or anything because anything that they would do only worsens the pain.  I know it stinks for me because I would do anything for them to be able to hold me and hug me and for them to be able to tell me “everything is going to be ok.”  But… due to my illnesses, I cannot have that happen because I am so hypersensitive that the slightest touch is so incredibly painful to me.  Plus… whenever I get an attack, my autonomic dysfunction really starts up and therefore, I have trouble breathing, I get really hot and I cannot sweat to cool down, I get prickly, etc.  I get so uncomfortable and nothing really helps. So when they touch me, it only worsens things because it is as if they are “smothering” me.  It is so unfair that the slightest touch, even the caress of a loved one, the kiss rom a family member, etc. will send me up the walls in pain. 

I have severe allodynia.  Allodynia is when even the lightest touches or sounds cause extreme pain. Maybe the person sitting next to you at dinner touches your RSD arm, or your foot gets accidentally kicked at the pew at Church, or your leg gets bumped into at school; all these things seem harmless to the average person and they may not understand how they could ever cause pain.  Yet, to someone like me, they can!! Even a light breeze causes excruciating pain. 

My brother was so scared.  Not only did he sit on the couch.  But all he could do was just stare at me and try to make me feel better by talking to me. I know he only meant well by trying to “talk” to me, but I was in so much pain that I didn’t want to be bothered.  The pain was so intense that I was in no mood to talk at all.  My brother gets so scared that he is going to lose me and he hasn’t been handling the situation well that I am rapidly deteriorating and that he is literally “watching” me die.  He just sat there on the couch telling me “how much he loved me” and he kept making sure that I knew it.  My brother is really too kind.

I just wish that I could make it better for my family because they don’t deserve all of this. They have literally had to give up so much for me.  Their whole entire lives had to change because of me.  Due to my illness, we can’t do many things.  For one thing, we can’t really do any “activities” as a family and have fun.  One of the problems this leads to is when our loved ones try to do something nice for us and plan a whole days activities. It is just too much for me!  Because of this disease, we had to change our whole way of thinking to include doing things in moderation. We can only do things in the morning when I am at my strongest and my pain is at its lowest. Plus, we always have to work around my appointments, which are so frequent.  We used to be one happy family.  Now even laughter in the house is a distant memory.  This is not the life I ever expected.

Another strange symptom that has to be factored into my daily life is that vibrations and noise bother me; it can actually make the pain skyrocket! A simple ride in the car over a bumpy road can cause a spike in pain. Due to the noise and vibrations causing me extra pain, for instance, there are a lot of things I cannot do and places I cannot go. These are places most people take for granted and may wonder why we are not there. They may think we are shutting ourselves off by not going, such as going out with friends, but if there are a lot of people making noise, even if it is simply singing or clapping, a baby crying, it can cause my pain to spike. Visits sometimes have to be cut short due to all the regular noise that is typically generated.

Well… I guess I should tell you the latest as to what is going on.  I spoke to the doctors today and things are getting set.  I am supposed to be leaving in 15 days for Indiana for the transplant.  Even though we didn’t know what to do first, which was to either go for the transplant or the ketamine coma out of the country, we decided to go with this plan because even if I went with the ketamine coma out of the country, there is no guarantee that it would CURE me.  Plus… things are getting so horrendous that unless I get a transplant and a transplant soon, I am going to die.  Ideally I need both but it is like… what do we do first?  It is like the same as “Which came first… the chicken or the egg?”

Since I really need a multivisceral transplant, which is getting a new small and large intestine, stomach, pancreas, and liver, we are headed to Indiana on January 20th.  Hopefully I won’t have to wait long after to receive the organs because I don’t know how much longer I have with the organs that I have currently.  When we look at me now and how I been having these painful attacks and such… we know how desperately we are running out of time!!

On February 3rd, we are then heading to California for the ketamine coma.  My entire team is there in California even though my transplant team is in Indiana. So, I am going to be headed to California at that time for the workup for the ketamine coma since they can’t just put me into a heavily induced coma.  Even though I have been getting ketamine comas in New York, they are not nearly as intense as the one I will be receiving in California.  The one in California will be for about 10 days or so in duration and around the clock.  The amount of ketamine I will be receiving will probably be enough to kill a horse.  I will need close monitoring because it is very dangerous.  Hopefully the ketamine will do something for the pain and help my nervous system to a point because this is our only shot at this point.  We are hoping that this ketamine coma will keep me going til the transplant.

The doctors in California will not give me the ziconotide in the pump.  Like I said before the ziconotide is developed from marine life.  It is a synthesized peptide component of a neurotoxin secreted by the cone shell snail, Conus magus, which is thought to work by preventing the release of neurotransmitters involved in the transmission of pain at the spinal cord level.  However, since it did need the pump to be administered, I cannot receive it.  There is no way that the surgeons will be able to place a pump in me due to how small I am and how poor my health is.  They are too worried about the complications that would arise from the pump because when you are as thin as me and undernourished, I have a dearth of soft tissue mass to cover a subcutaneously implanted pump.  However, they did say that they would give me an injection of the ziconotide to see if it did indeed wok on me.  They said that at least we will find out if it had the “potential” to work or not and if we knew at a later time if a pump was an option. 

So… things are really going to be hectic in the next few weeks.  I gotta keep up my strength because there is going to be so much traveling and stuff going on that it usually knocks me out when I travel as it is… let alone when I am as sick as I am now.  I honestly don’t know how we are going to manage to do all this considering how much money this is all going to cost and how much time dad is going to have to take away from work.  However, it is at the point that we have no other choice.  If we don’t do this now… I am going to DIE.

So… even though we really don’t know how we are going to manage to do all this or how we are going to afford this all, I am really hoping that something will come about that will help me raise funds or something because I don’t want to die.  I know it is going to be impossible to raise enough money to cover EVERYTHING, but I desperately need something.  I will take as much as I can get because even a dollar makes a difference.  I am really hoping that the media might do my story or that more people might get whim of my situation by seeing my posters, messages on Facebook, website, etc. and be able to donate.  So… if you can do anything to facilitate this, I would really appreciate it.  You can’t imagine how desperate I am and how thankful I would be for anything that you would be able to do.  My life basically rests in the hands of others because I can’t live without these treatments and these treatments are so dependent on money… something that I really don’t have. 

In addition, I need a private plane to take me to Indiana when the transplant becomes available.  Usually, the surgeons make the patients move to within 4 hours of Indiana because when the organs become available, the patients have to get to the hospital in a timely matter.  However, the surgeons were willing for me to remain at home and wait for the transplant because they knew how hard it was for my dad and I to live there as long as we had a private plane to take us to Indiana when the organs became available.   We had to have everything planned out carefully when we meet with them on the 20th because they didn’t want us figuring it out last minute because these are organs that we are playing around with… something that is too special and too important.

So… in order for me to take a private plane to Indiana, it really would cost like $14,000.  I really don’t have the funds for that.  I am trying to talk to a company that might be able to help.  I am still awaiting to hear back from them, but I am hoping that they will be able to help.  I need to find a place that will be able to take me in an minutes notice, as well as a place that will hopefully do it for as little as possible because I can’t really afford to spend a lot on the plane because we don’t have the money to do so.  But like I said… I contacted a flight company and waiting to hear back from them.  I am going to try to call them again tomorrow because they were supposed to call me back today and I never heard from them. 

Well… I guess that appears to be everything.  I just wanted to bring you up to the latest info.  I am all booked for both trips.  It is going to be a long next couple of weeks for me.  My brother is very nervous for me because he knows that MARCH is not far away and he is scared of that month.  He is scared that I am going to have the transplant or ketamine coma that month because he knows that MARCH hasn’t been a good month for me at all.  Every year something has happened in March to me that landed me in the hospital fighting for my life.  In fact, when I was on the phone with the doctor tonight, my brother overheard the plans and actually went over to my mom because he was so concerned that this was going to happen in March and something horrible was going to happen. He doesn’t want me to have the transplant or coma or anything else in March because he thinks I am going to die from it definitely if I have it at that time. My parents and I told him not to worry, but he still is.  It is quite funny (I have to admit) that something happens every March that leaves me in the hospital fighting for my life.  But hopefully this year will be different. 

Well… I guess I will be going.  I am in too much pain to keep writing.  I just wanted to let you know the latest.  When I get more news… I will write again.   Again… it is people like you that get keep me going.  Just like medications, it is my “friends” and “family” who get me through each day. The value of none of these things can be minimized. Not just for the physiological changes that they bring to my body but for the psychological ones as well.

Love,

Fallon

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January 4, 2013

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Hey-

I can’t believe that the New Year is here already. Wow… 2013. Do you know that this is the first year since 1987 that there haven’t been 2 of the same numbers in the year?  For example, 1988 had two 8s and 2012 had two 2s.  How weird is that?  Anyway… I thought maybe I would be able to leave all the bad stuff that was happening to me in 2012, and I thought that 2013 might be my “miracle” year!  However, apparently I was wrong.  Just as in 2012, my life just continues to unravel and worsen. It is only the 4th of the year and already I am filled with bad news.

I feel so lost and confused! What do you do when you feel like your world is coming apart and you’re at crossroads of life and death and you don’t know which direction to go in? Feel like I don’t know which yellow brick road is going to take me to the wizard to make me all better. I can’t do this anymore!! I don’t know how much more I can take!!

I just went for a ketamine coma yesterday and it kinda was the “icing” on the cake as to all the problems that I was having.  It kinda was the final ingredient to make the volcano erupt because as of right now I am in complete turmoil and can’t stop crying.  I am crying because I don’t know what my life has turned into as it went from a life that was full of so much promise to a life full of nothing but sorrow and disappointment. I had so much going for me.  I was top of my class and was looking forward to becoming a doctor, having a family, and leading a happy and healthy life.  Little did I know that my life was going to come apart at the seams and I was going to be robbed of everything that life had to offer.  Even the littlest things that people take for granted… such as eating, walking, showering, etc.… I have lost.  I have went into a life that is isolated and into a world full of nothing put horrible and excruciating pain 24/7.  I can’t even walk, eat, or enjoy what life has to offer.  I have lost basically all my friends and family because you really learn who matters most when you are sick because they are the ones who “stick” around.

In addition, I have made my entire family suffer as we went from having money and living comfortably to being “broke” and now having barely enough money to pay the bills.  My mom and dad work harder than ever ( dad works 7 days a week and mom works 6 days… and they are no youngsters) and yet, we can’t even muster enough money to pay my medical expenses to get me the necessary treatment to get me well.  We have enough trouble paying the necessary bills like the mortgage.  I can’t believe what has happened to me and what I have done to my family. I am so sorry for what I did to them and wish I could change it because they certainly don’t deserve the burden that I have become on them.  They literally have had to give up their lives because of me.

About a year ago I started this blog as a way to keep my friends and family, as well as others updated on what I was going through.  I was diagnosed with a rare and life-threatening disease and it was a disease that people didn’t really know about.  I was hoping to bring awareness to this disease, as well as hoping to bring funds towards my illness so that I could receive the necessary lifesaving treatment that I needed.  Even though my family would do whatever they could to save my life, it has gotten to the point that they can’t afford the astronomical cost of my disease anymore.  It has basically consumed all our finances.  Between the doctor bills, medications, copayments, insurance, traveling expenses, etc.… the cost is just too great.  Just in copayments alone, we spend over $25,000, and that is with the insurance paying part of it.  We still have to worry about the doctor and medication that the insurance doesn’t pay for.  I take over 50 pills daily, so it isn’t like I don’t take a lot of medication.  Plus, the medication I take is extremely expensive and I can’t even get it all in the United States.  Some medication isn’t FDA approved and as a result, it is definitely not covered by insurance.  Finally, since my disease is so rare and complex, I have to seek the help of top specialists.  You would think that I wouldn’t have to travel far because I live in New York, which is supposed to be full of such wonderful hospitals.  However, we are forced to travel throughout the country including to California, Indiana, Florida, etc.  In fact, I even need a procedure that is given outside the United States in Santo Domingo because it isn’t FDA approved in the United States.  As a result, the traveling to these doctors exhausts so much of the funds and really drains us.  It is really important to get some donations because otherwise I won’t be able to receive treatment.

This blog was also a way of getting support from people.  This journey has been a long and difficult one. I don’t think that I would have made it this far without the support and encouragement of other people.  Sometimes it was because of this support and encouragement that actually made me continue onward.  It gave me hope!  It’s hard to give up on something that you always have wanted (which was to get well); but it’s even harder to give up when you know it’s everything you want.  However, it is only through the encouragement and support of others that have kept me going.

However, lately I don’t know what to do.  I am at a point right now that is so crucial because I am rapidly deteriorating and time is of the essence.  Making the wrong decision can easily kill me.  I need to make the right decision because I don’t have the time, strength, or finances to afford making the wrong decision.

I just went for a ketamine coma yesterday and the news that we received from the doctors wasn’t good.  I am very complex, as I suffer from rare and life threatening diseases that doctors aren’t sure how to go about to treat.  I suffer from a rare and life threatening neurological disease known as Reflex Sympathetic Dystrophy as well as Autonomic Dysfunction.  I also suffer from severe gastroparesis and a brain tumor.  It is thought that the gastroparesis developed since I have this severe neurological disease and autonomic dysfunction.  The Reflex Sympathetic Dysfunction affects everything that is on the nervous system or is controlled by the nervous system and as a result, the GI system is greatly affected. As a  result, my entire GI system has become paralyzed and has “died.”  I now need a multivisceral organ transplant, which includes a small and large intestine, stomach, pancreas, and liver.  I only weigh in the 60s.

RSD is a complex, mysterious and very confusing disease. It is incredibly hard to understand, for both regular people and medical professionals alike. But I have great faith that the doctors on the frontlines of RSD research and treatment are getting closer to those answers.  However, as of now, they aren’t too sure about how to treat the illness.

I was supposed to be leaving on January 20th for Indiana because I am in need of a this multivisceral transplant.  However, we aren’t sure if that is the best thing to do.  Some of my doctors think that I am going to die if I am to have that transplant.  It is a very rare and dangerous transplant, as only 6 hospitals in the United States even perform this operation.  Plus, I am so fragile to begin with because of my complex condition.  Due to my neurological disease, I am very hypersensitive and therefore, anything that is considered “traumatic” can cause extreme havoc to me.  Even the most innocuous touch can be considered too traumatic for me and therefore, it can cause a great host of problems for me.  Everything is magnified for me. A simple needle stick is like someone sticking a knife in me.  A simple cold is like getting the flu to me.  So, anything minor is considered major and can easily kill me.  So you can just imagine how MAJOR a MAJOR surgery would be on me when it is already considered MAJOR surgery.  It already only has a one-year survival rate of 75% roughly.  Out of those numbers, the 5-year survival rate is only 50%.

However, we don’t know if this is the right thing because I will still have the neurological disease and autonomic dysfunction.  The transplant surgeon say that it will “save” my life in the sense that I won’t die tomorrow anymore, but it won’t really solve my problems completely.  They don’t know how long it will last or how “normal” it will make me because I still will have this underlying problem.

Therefore, we don’t know if we should proceed with this transplant first or first go and treat the neurological/autonomic disease.  The problem is that even the treatment for the neurological disease isn’t cheap or easy.  In fact, it is very expensive, as it is over $100,000 and not covered by insurance.  It is also given outside of the country because it is not FDA approved.  So, just with finances alone, we can’t really afford to do both treatments… the transplant and the treatment outside the United States. We are having a great deal of problems just trying to afford one.

Even though I do get ketamine comas in New York, the amount of ketamine that I require for my illness is far too great than is FDA approved.  As a result, I would need to go to Santo Domingo to have that performed.

The Ketamine Coma is a very radical procedure that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.  During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.  So far, only about 100 patients have taken part in the study.  However, like any treatment, there are no guarantees. There are also significant risks.

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.  The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.  Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries. My doctor in Florida is one of only a few specialists that are teamed up with these doctors in Santo Domingo to perform this ketamine coma.

If we go down that route, we need to go ASAP to Florida because my doctor there makes the arrangements.  So, I need to decide if we should do that.  However, we were also thinking about going back to California because my west coast doctors have another option.

Since the coma out of the country is so radical and expensive, the West coast in Cali has a different treatment that wouldn’t cure me but it would give me a great reduction of pain.  Ziconotide  is developed from marine life.  It is a synthesized peptide component of a neurotoxin secreted by the cone shell snail, Conus magus, which is thought to work by preventing the release of neurotransmitters involved in the transmission of pain at the spinal cord level. Ziconotide was recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of chronic severe pain in which intrathecal (IT) therapy is warranted. In IT therapy, medication is delivered by catheter to the spinal fluid by means of an internal pump implanted in the abdomen. The only thing is that I would need a pump and I am way too small for it.  However, I found a technique that possibly they could use by implanting it subfascially. Indwelling intrathecal drug delivery systems are becoming increasingly important as a method of neuromodulation within the nervous system.  Usually they are implanted subcutaneously. The most common complications leading to these pumps are skin breakdown and infection at the pump implantation site.  When you are as thin as me and undernourished, I have a dearth of soft tissue mass to cover a subcutaneously implanted pump. Therefore, I found a technique of subfascial implantation that provides greater soft tissue coverage of the pump, thereby reducing the potential for skin breakdown and improving the cosmetic appearance of the implantation site.  I don’t know if it will work, but it is a suggestion.  I will have to call Cali to find out.  But now I have to decide which route to go.

I am basically at a crossroad… and I don’t know which road to go down.  I don’t know if I go for a transplant first and save my life that way because I weigh nothing and I can’t eat.  My entire GI system is basically “dead.”  However, like I said before, the doctors said they don’t know how much better it would be because of the other underlying problems. At the very least though, I won’t be dying tomorrow though, which will definitely happen if something isn’t done fast.  I can also try to go and treat the underlying disease first, but then it matters which way I go for that.  Do I spend the money and go out of the country for the rare and radical coma or do I go to Cali and have the snail venom, which is also rare and radical.  All this stuff is completely risky.

In addition, just because I go for the treatment for the neurological disease, it doesn’t mean that I won’t need the transplant afterwards.  It is very possible that the coma in a very high dose can reverse the paralysis of my GI stomach, but the doctors already think that it is so far gone that nothing will bring it back.  Yet, ketamine in extreme high doses have done miraculous things that doctors can’t believe. It has been seen to close up wounds and such that nothing else would.  So, there is a very possibility that the transplant might get to be avoided if the ketamine coma out of the country is successful.  But… there are no guarantees.  In addition, just because I get better from the coma, it can very well come back.  Hitting my foot or any wrong move, injury or sickness can still cause a setback or bring back my disease totally.

All I know is that I desperately need help.  RSD is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index. Worse than that of cancer, childbirth and even amputation! It’s a vicious cycle that has been best compared to an engine revving out of control, even though the key is no longer in the ignition.

I need help because I am in so much pain.  Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire.  Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating neurological disorder that occurs when the nervous system malfunctions.  RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.

So… we just don’t know what to do.  When I went for the ketamine coma today, my doctor also wanted to give me a injection called Celiac Plexus Block because of the huge stomach pains that I have been getting.  I have been having such excruciating stomach pains that all I can do is curl up in a ball and cry.   A celiac plexus block is an injection of local anesthetic into or around the celiac plexus of nerves that surrounds the aorta, the main artery in the abdomen. Normally these nerves control basic nerve functions. In certain conditions, these nerves can carry pain information from the gut or abdominal organ tissues back to the spinal cord and brain.

A celiac plexus block is performed to block the celiac plexus of nerves that go various organs and parts of the abdomen. The purpose was to reduce the pain in my abdomen and stomach. However, even though it could cause pain relief for a couple of hours, it could make the gastroparesis worse.  Therefore, we don’t think that we are going to proceed with this.

Well… I guess I will be going.  I really have a lot to think about and my head is spinning.  I really don’t know what to do.  I don’t know which way to go… do I go to Indiana for the transplant, do I go to Florida so that my doctor can send me out of the country so that I can have the radical ketamine coma, or do I go to California to have the snail venom?  I just wish my doctors can all decide on the one treatment to have instead of each of them having their own beliefs.  I guess that is what happens when you are so rare, complex, and deathly ill.

I really need to make the right decision and soon because I can’t afford to do them all and I am rapidly deteriorating. If something isn’t done soon, I am going to die.  As it is… we don’t know if I am going to make it from one day to the next.  Why does life have to be so complicated?  All I know is that all these treatments, no matter which I decide on, are incredibly expensive and I probably won’t be able to afford without help from others.  So maybe all this worrying about what to have is pointless because I don’t have the funds right now to get any of them.  I am just hoping that we find the means to have any of these treatments so that I can possibly live.

I know I sound like a broken record, but if you can possibly think of any way to fundraise or raise any money or support for treatment, I would really appreciate it.  As of right now, we can’t really pay for the needed treatment to save my life.  All parts of my treatments are expensive and we definitely need the funds.  As of right now, we are headed to Indiana on January 20th for the transplant.  So… if nothing else… please say a prayer for me and spread the word of my website. I am desperately pleading for help because without it, I don’t know how much more treatment we are going to be able to afford.

Love,

Fallon

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