FALLON MIRSKY

Please help SAVE MY LIFE!

October 27, 2012

Hey-

Told you that I would update you on what happens as soon as I knew something.  Well… here it is…

Spoke to Nebraska and everything appears to be a “GO!”  I am scheduled to fly out November 18th.  I just now have to last that long.  It isn’t that far off, so I hope I can make it that far.  But, I am not counting my chickens before they hatch, so I am just going to take one day at a time.

I was really hesitant to go that week because it was Thanksgiving. It was really important for me to stay at home that week because I am so sick and have a gut feeling that this is my very last Thanksgiving. I really wanted to celebrate it with my entire family, which included my mom and brother since they won’t be going to Nebraska with my dad and me.  Unfortunately, it is only my dad who travels with me because not only is it too expensive for the entire family to go to all these places, but someone has to stay home and take care of things such as the house, animals, and business to a point.  Even though the business can’t really function without my dad since he is the one who really “owns” the business and does the work (he goes out and services the customers and puts everything together), my mom does her best to try to keep the business going when we aren’t here.  Although she can’t physically do the work that is needed to get away the pests, insects, rodents, etc., at least she can be in the office to take the calls when people call in.  If she weren’t there, people would just bypass us and move on to another company.  But of course even though she does take the call, the company does suffer because my dad is needed to carry out the work.  Only so much work can go out via the other technicians.  Plus, my mom pays the bills.  So, at least that is accomplished as well.

Some people might ask why she doesn’t go with me to the hospitals instead of my dad.  Although it might seem better that my mom go with me to the hospitals and travel with me to the necessary hospitals, it is really better if my dad travels with me for multiple reasons. First of all, my mom needs to be around for the business.  Although the business can’t really “function” without my dad because the work can’t be carried out physically, at least the bills can be paid to a point (as long as there is money) and she can answer the phones when they ring.  If my dad was here and my mom was with me, there would be no one in the office and as a result, no new work could be brought in because there would be no one in the office to answer the phones.  My dad also isn’t really capable of doing payroll, sending out invoices to customers, and paying bills.  Whereas my dad does all the “physical” work in the business so that the business can function and the work can get carried out, the business cannot function without my mom because my mom is the only one who can really do the “internal” work of the company.  She is the one who allows the company to function at the “office” level and makes sure that everything runs smoothly.  They really make up a great team and when one of them is missing, it really takes a HUGE toll on the company because the company is unable to function.  So, which is the better of the two evils?  We figured that it would be better for my dad to travel with me because if my dad was left here alone in the company, he wouldn’t be able to do everything and he doesn’t really know how to do payroll, wouldn’t be able to send invoices to customers (so that we can get paid and money can be brought in to some point), bills can be paid, and he can be in the office to answer phone calls and bring in new work.

In addition, my mom can’t travel with me to various places because she isn’t well herself. My mom also suffers from her own medical problems, as she suffers from Multiple Sclerosis.  Some might say that my family has our hands full, but we try to make do with what we are dealt with.  My mom has really been a real “trooper” because we all know how difficult Multiple Sclerosis can be to handle and especially when she doesn’t get as much help, as she really needs.  It would really be too much of a trouble for her to travel with me with her own illness and therefore, she remains at home.

My mom not only suffers from multiple sclerosis, but she also needs knee replacement surgery.  As a result, she can barely walk.  Problems with walking and gait are one of the biggest problems with multiple sclerosis, but having this knee problem is a huge problem.  Her knee is so bad that the knee has basically collapsed and as a result, she literally has bone rubbing on bone.  She can barely walk and is walking with a cane, if at all, and she desperately needs knee replacement surgery.  However, she is not getting the surgery because of my health.  I am so fortunate that I have such a wonderful mother that puts herself on the back burner so that I can take care of myself because I know how difficult and painful this is for her.  Not only can she not walk, but she is also in enormous pain. Yet, she doesn’t have the surgery that could and would correct this situation because she doesn’t have the time to have it since the recuperation is so long.  She wouldn’t be able to work or do anything for such awhile and therefore, it would really interfere with me getting treatment.  There would be absolutely no way I would be able to travel to get the necessary treatment that I need because there would be absolutely no one available to stay in the office to do the stuff that needs to be done for the office to function.  Even though the office minimally functions at the level it does when we are away and it really has a detrimental effect on the business, at least it still is “functioning.”  Without my mom being there, it would be horrendous as the business would definitely be lost, as there would be no one to pay the bills, answer the calls, send out invoices, do the work, etc.  Essentially, the business wouldn’t be able to exist and we would lose the business for sure… something we definitely can’t afford to have happen.  So… my mom has put aside her problems so that I can get the treatment that I need.

I can’t thank my mom enough for all that she has done for me and continues to do for me.  I really do have the best mom in the world.  I am just so worried that something is going to happen to her because people with multiple sclerosis really can’t take so much stress and work like she does.  Plus, with all the inflammation that is occurring because of her knee, I am sure that it is affecting her MS as well.  I am also so very worried that she is going to fall or something because she can barely walk.  She is in enormous pain and especially when we are gone, there is no one to help her do anything.  My mom desperately needs knee replacement surgery and I only wish there was something that can be done so that she could get it.  She is in an enormous amount of pain and she definitely shouldn’t be in this much pain.  She shouldn’t have to suffer with this much pain, especially when there is a way to correct it and have all that pain disappear.  Yet, she constantly battles this pain and such because she wants me to take care of myself instead.  She always puts my needs ahead of herself and with money being so “tight” as it is, we really can’t afford to have the business close down or not have any money brought in.  It would really be detrimental to us as we are having a HUGE amount of trouble paying our bills as it is.  If I could make it better for her, I wish I could.  I just wish I would get better already so that she could take care of herself.

Perhaps one of the reasons that I suffer from an autonomic disease is because my mom has MS.  After all, MS is a chronic demyelinating inflammatory disorder, and it is presumed to be of autoimmune etiology.  In fact, the most common manifestations of the Autonomic Dysfunction in patients with MS include bladder dysfunction, sleep disturbances, sweating, gastrointestinal and cardiovascular disturbances.  In addition, digestion is controlled by the autonomic nervous system. When the ANS malfunctions, the “victim” commonly develops gastrointestinal problems. Therefore, it is no wonder that I developed a problem known as gastroparesis.

Gastroparesis is a condition that reduces the ability of the stomach to empty its contents, but there is no blockage (obstruction). Gastroparesis, also called delayed gastric emptying, is a disorder that slows or stops the movement of food from the stomach to the small intestine. Normally, the muscles of the stomach, which are controlled by the vagus nerve, contract to break up food and move it through the gastrointestinal (GI) tract. The GI tract is a series of hollow organs joined in a long, twisting tube from the mouth to the anus. The movement of muscles in the GI tract, along with the release of hormones and enzymes, allows for the digestion of food. Gastroparesis can occur when the vagus nerve is damaged by illness or injury and the stomach muscles stop working normally. Food then moves slowly from the stomach to the small intestine or stops moving altogether.  Gastroparesis is complicated to treat and treatment options are limited. There are few medications available, mostly geared towards symptom control rather than dealing with the underlying problem. For this reason, they are often ineffective.

As  a result, I have been really suffering and have been really sick.  Besides suffering from my underlying neurogical disease of RSD and my brain tumor, I have been suffering from this severe gastroparesis. I barely weigh 70 pounds and my body is quickly shutting down.  I am suffering so much and I really need something to be done in order to be able to continue to live.  However, not many doctors know how to treat this illness, as it is extremely difficult to treat.  I have been to countless number of doctors and exhausted all my options in the New York area.  I have traveled to various places in the United States and tried various methods to improve my quality of living.  Yet, it has come down to the fact that only a GI transplant would potentially save my life.

I need a transplant that is extremely rare and only 8 hospitals in the country actually do it.  It runs the highest rejection rate of all transplants.  I need a new stomach, small and large intestine, and a brand new pancreas at the very least.  In short, I need a multi-organ visceral transplant if I have any chance of living.  Although the best place for me to get this done is California because they have all the treatment teams there to handle all my underlying conditions, the only places that my insurance will cover will be Nebraska and Indiana.  Only if they “deny” me will the insurance company most likely pay for California to have it done there.  However, even with the insurance company paying for the transplant, which will cost over a million dollars, I desperately need the help of others if I am going to be able to have it done.  There is no way that I can be able to afford to continue treatment, as my disease as really become a financial burden on my family.  The copayments, doctors, traveling expenses, medications, insurance costs, deductibles, etc. all add up and we can’t afford it anymore despite making as many “cuts” as we did.  Even with us going to Nebraska and having the insurance pay for the actual transplant, we still need help because we have to worry about the traveling expenses, copayments, deductibles, medications, etc.  We will have to worry about the living expenses while we are there because I will have to live there for a period of time, and each time I go into the hospital, go for a test, see a doctor, etc., there is a huge copayment to be paid.  In addition, after the transplant, I will also have to pay for the anti-rejection medications, which will cost me $1000 alone just for those… and that is not including all the other medications that I will need.

We have no idea how we are going to be able to afford all of this.  My only hope is that I will be able to raise money through the help of others.  That is my only chance of being able to “survive.”  I only hope that through the help of others… whether it is through the prayers, spreading the word that I need help and of my website, or even donating… that I will receive some donations that will be able to help me.  After all, every $1 makes a HUGE difference.

Anyway, I told you that I would write when I had more info to share.  Well… it appears that we are supposed to be leaving November 18th for Nebraska.  We had to take a very early flight because I have surgery scheduled on Monday.  The doctors want to do an “exploratory” type of surgery to see exactly what is going on and to get a better picture of what is doing.  After all, even though I have a huge amount of records and have been to other places and had other doctors look at me, this is the first time I will be at the hospital in Nebraska.

This hospital is really intensive with getting a very “clear” picture in what they are dealing with.  Even though they had received all my records, they still wanted to run their own tests to make sure that all the tests were as accurate as could be.  They insist that the only records that they can “trust” are the records that they run and therefore, they want to run their own despite all the tests that I already had. In addition, they don’t just want to run GI test that are in the field we are dealing with.  They want a complete picture of me, and therefore, they want to know my entire body. They are running every single test that you can imagine from bone tests (dexa scans) to pap smears to gastric emptying studies to more.  They want to make sure that they don’t miss anything in any field.  It is nice to know that they are very thorough.

When I go for the surgery on Monday, I will be having the head of the gastroenterology department perform the surgery.  I knew that the doctor that I was seeing when I went down there was head of the “transplant” team and when I asked if he was the one performing the surgery as well, I was told that the head of the gastro dept. was doing it instead.  I can’t believe that I am getting all the very best doctors working on me.  I am not just getting the “ordinary” doctors that work in the hospital, if you know what I mean.  Instead, they are making sure that I receive the very best care.

The surgery will be done under bypass as well.  They are putting me under general anesthesia and due to my complex medical history and how sick I am, they will be putting me on total bypass.  With all my medications that I take and how very sick I am, it isn’t safe to not do it any other way.  They said that my organs, heart, lungs, etc. need to rest during this time and they wouldn’t be able to manage everything during this time.

So, I will be having surgery on Monday and then meeting with the transplant doctor, Dr. Mercer on Tuesday.  Like I said before, he is “head” of the transplant team, so I know that I will be in very good hands.  I will be having additional testing and such for the next couple of days. However, they knew how very important it was that I was home for Thanksgiving and guess what?  They are allowing me to come home for thanksgiving.  Even though I will be traveling on that actual day, at least I am coming home.

I am so glad to be coming home for Thanksgiving because it was so very important to me.  I really wanted to celebrate thanksgiving with my mom and brother and such because I have a feeling with my deteriorating health that it is going to be my very last thanksgiving.  I definitely have a feeling that if I don’t get the transplant that this will be my very last thanksgiving.  I definitely won’t make it another year without the transplant.  I am just way too sick.  I just don’t weigh enough and my organs are shutting down too much as well.  The doctors already said that if I was a “male,” I definitely wouldn’t be alive.  Thankfully, I am a female and therefore, I am able to survive a bit longer because females can live at lower levels than males.  Yet, even at the levels that females can live at, I am already at their border. The doctors have already stated that they don’t know how much longer I can “hang in there.”  They already said that I can basically “die any day.”  So… in the meantime, I just wanna celebrate each day that I am living and cherish each day as well.  I wanna live each day to the fullest.

Each Thanksgiving,  I am the one who usually makes the dinner.  However, since I will first be coming home this Thanksgiving on that actual day, it gives me no time to actually “make” thanksgiving.  I did suggest to my mom that we would have a “thanksgiving brisket” instead because it takes so much less time to cook a brisket than a turkey, but something about having a brisket instead of a turkey on thanksgiving, it just doesn’t seem right.  So, my mom said that we will order a pre-cooked turkey with all the trimmings and therefore, it will be all cooked and prepared for us.  This way we will still be able to have our “official” turkey.  It won’t be as nearly as good as if I cooked the meal myself, but it will just have to do.  I insisted that I would still make the side dishes because our flight arrived about 1 O’clock, but my father insisted that I probably will be too “sick” to do anything.  After all, traveling takes a lot out of me and especially traveling from Nebraska and being up all those hours, it probably will exhaust me.

But, I am just so glad that I am getting to come home that day.  I do have to return though 2 weeks later to continue the treatment and do the surgery in whatever is decided during the time I go down during the week of the 18th.

I really can’t believe how well the hospital in Nebraska is taking care of me.  I never heard of the stuff that they are doing for me.  When I was talking to them and scheduling everything, they wanted my flight numbers.  I couldn’t imagine what it would be for, but apparently we don’t have to worry about transportation to or from the airport.  Instead, the people from the hospital (doctors) will be picking us up from the airport and also driving us back to the airport when we leave.  I can’t believe how much they will be keeping complete tabs on me from the moment I leave New York to the minute I touch down in Nebraska.  They even have my complete flight information from the time I leave Nebraska to the minute I return to New York, which includes my stopover as well too.  I would think they would at the very most just want my flight time I am leaving.  I wouldn’t think that they would want the exact details.  But… they really want to keep close tabs on me, like I said before.

I never heard of anything like this before.  When they said that they were picking us up and driving us to the airport when we were leaving, I was completely surprised.  I would never think that a hospital would do this.  But, because I am so very sick and because I am on their service… they end up doing this.  It isn’t like the entire hospital does it for everyone.  It is just their service.  You know?

In addition, I was also told that they would make the accommodations for me.  Originally I thought I would have to stay at a hotel that was “separate” from the hospital.  Who would think that the hospital would have its own hotel connected to it?  The service that I am on in the hospital actually has its own hotel in the hospital so that we don’t have to leave the hospital at all.  I couldn’t believe it.  However, I don’t know if my dad and I are going to stay there during this time, but we know we are definitely probably going to stay there the next time.

The hotel in the hospital consists of suites, so it is just like staying in a real hotel.  The only thing is that it doesn’t have a “restaurant” per se.  Instead, it is eating in the cafeteria in the hospital and they have SUBWAY and other stuff.  Knowing how difficult I have eating and such, I don’t know if it is such a good idea to stay there and such because I definitely can’t get done SUBWAY and stuff like that.  However, the next time we go to the hospital, we are definitely going to be staying in the hotel at the hospital because I will be hospitalized the entire time. In this way, my dad will be able to stay very close to me and not have to worry about traveling back and forth to the hospital and hotel.  It will be so much more convenient.  We won’t have to worry about me eating either because I will be on the actual “inpatient floor” of the hospital. I never heard of things like this.  They really try to make it as “homey” as possibly for you and as “easy” for you as possible too.  They are going to make arrangements at the hotel at the hospital for both visits in the meantime and we will decide as we get closer, but in the meantime at least we will have that option.

In a way it would be better to stay at the hotel on campus as well because it will be so very cold in Nebraska.  I hate the cold and it is already so cold there.  When I spoke to them today, it is only having a high of 40 degrees.  Gosh, I can only imagine how cold it is going to be in 3 weeks.  I am really going to freeze.  I am definitely going to have to bring winter wear… scarf, gloves, winter coat, etc.  At least they said I won’t have to worry about snow.  They don’t get snow until later on in the year.  However, with the weather being the way it has been lately, you never know what is going to happen.  Anything is possible.

Speaking of weather… I am really crossing my fingers that the storm (Hurricane Sandy) isn’t so bad.  Even though we are listed with LIPA as getting priority status in case of an EMERGENCY, I still don’t want to bother having to deal with this issue.  Having no power is definitely no fun.  I don’t know what I am going to do with no  power because my life sustaining equipment relies on it, I need the heat that relies on it, and of course I need to eat and drink that rely on the usage of power as well. So… I am just hoping that everything will be ok and the storm will “fiddle” out as much as possible.  I remember last year how they said that the storm was going to be so HUGE and they had all these evacuations and everything.  We ended up staying because we had our animals even though we did pack a bag in case we had to get out in an emergency.  However, it definitely was not that much to worry about and we really lucked out.  Hopefully we will be in the same boat.

Well… I am going to get going.  I just wanted to update you on all that is going on.  When I know more information, I will let you know more.  I have bloods on Monday, which is when the storm is going to hit, so I hope that I still get to get them drawn.  With my bloods being the way that they are… it is really detrimental for me to have them done because my heart is doing really bad.  It is at the level that I can have cardiac arrest very easily and can easily go into an arrhythmia.  They definitely need to be closely monitored because if they drop further, it can be very dangerous (even more so than now). I have been fortunate to be able to bargain with the doctors as of now to keep me out of the hospital, but I know that will only keep up for so long.  I know that if it continues to drop… they will only bargain for so long.  I know honestly the best place for me is the hospital, but I just don’t want to go. I don’t want to spend my life in the hospital and I know that is what is going to happen if I go there.  I know that if I go to the hospital, it will just be a merry-go-round because even though they might be able to bring up my bloods to a point, it won’t be without doing further harm because I can’t tolerate the medication in or IVs in my veins, and by the time I am released… it will only be a matter of days until I am back to square one.  Then I will only be back in the same situation.  When I had this done the last time and was discharged, I was back within the same boat within 5 days.  It isn’t where it even lasted for a while.

I know I am sick and I don’t want to spend whatever time I have left in the hospital.  Plus… with my condition, spending time in the hospital can only make me worse because I can’t be treated like a “normal” or “typical” patient.  Whenever I go to the hospital, the doctors and nurses don’t really know how to treat me and they always end up saying that they “see” things with me that they have never seen before.  I am always such a “sight” to be seen.

Well, until next time… please say a prayer, spread the word that “help” is needed and every $1 does make a difference.  Thanks again for all the help you have done for me.  I  appreciate anything that you have done and continue to do for me. I can’t tell you how much it means to me.  After all, my life depends on it and I am too young to die.  I still have my whole life to live and I have so much to live for and still want to do.  I am the “Energizer Bunny”  and my batteries aren’t ready to “die out” yet.

– Fallon

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October 26, 2012

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Hey-

Guess it is that time to update since I haven’t written in awhile and more news.  Definitely have a lot to say, but of course… not a lot of energy to do so.  Hasn’t been a good week, and that’s why you haven’t heard from me.  It is getting more and more difficult to write these updates because it takes so much energy from me to do this… energy that I don’t have anymore.  However, I really still wanna keep doing this as much as possible because not only does it give me the ability to let others know exactly what I am going through, but it gives me a channel to be able to express how I am feeling.  I definitely need that because so much is happening and I can’t keep it all bottled up.  Plus… I really want my story to be known and let others know exactly what I am going through. 

Well… as you already know… I am rapidly deteriorating.  You don’t have to be a rocket scientist to know that. Each day is getting harder to hang in there and harder to make it through… but I am still trying my best to get through it.  It is just getting harder. I really need to get HELP ASAP because I am running out of time.  However, it is a shame that there is really nothing that can be done in my local area and it is a shame that my life rests in the hands of others because my family and I can no longer afford my treatment. 

My family and I have been paying for my treatment for years and as a result, the money has officially ran out.  As a result, there really isn’t any more money to continue treatment.  I am really fearful of what that means because despite all the “cuts” we have made in treatments to minimize costs, it isn’t enough.  We are really having trouble continuing treatment and therefore, my life is even more at stake than ever because I cannot receive the necessary treatment that I require.  It is such a shame how everything rests on the “money” issue.  I sometimes wonder what would happen if the “dollar” didn’t exist.  What would happen if money didn’t exist in the world?  I sometimes think it is so unfair that money determines whether I will live or die because I can’t afford the treatment that is necessary to keep me alive. 

My disease is just so expensive, especially since my disease entails traveling to other states to receive treatment.  We have exhausted all our options in New York and therefore, we are forced to seek the advice of top specialists in other areas.  As a result, my parents have to take me to the other side of the country to receive treatment, which entails taking time away from work.  This only further contributes to the financial burden because without my parents being able to work, the business cannot function and work since they do “own” the business and have to be there and be available in order for it to work.  By them not being there to “run” the business, the business isn’t really able to function like it is and the “work” isn’t really going out.  As a result, money isn’t really being made as it is and my family isn’t making an income.  With no money being made in the business and my family not being able to or work because they are busy taking me for treatment, we have no money being made to pay the necessary bills that are needed to be paid for the house such as the medical bills, mortgage, etc.  These bills quickly add up and they need to be paid. 

I know that I am very sick and I don’t want anything to happen to my family because of me.  I don’t want my family to lose the business or the house because of the financial burden of my disease or anything. If anything like that would happen because of me, I would never forgive myself.  Therefore, even though I know that I would love to have them continue to spend on me and get me well, I quite understand that there isn’t anymore money to just spend on me and I understand how much of a “financial burden” this disease just is.  I mean… medications, copayments, health insurance, doctor appointments, traveling expenses, deductibles, etc. all add up.  With copayments alone (and that is with the insurance paying), we pay over $25,000 alone.  That isn’t including all the other stuff that we spend on such as the traveling expenses, the cost of the medications not covered by the insurance (which I take a lot of), doctors that I see that aren’t covered, cost of the health insurance, etc.  So… I realize how expensive this all gets and we can’t afford it.  Yet, I really don’t wanna die and it really stinks to know that I am rapidly deteriorating and there is possibly a treatment out there that can save my life… yet I can’t afford to keep myself alive anymore.

I suffer from a rare and life-threatening disease.  Not only do I suffer from a rare and life threatening neurological disease, autonomic dysfunction, gastroparesis, and brain tumor, I am still wanting to survive.  Although the future does look grim, I really want to continue to try everything to survive.  There are some treatments still available from top specialists that could possibly continue to keep me alive, but of course that means more money being spent… money that I don’t have.  The doctors never expected me to last and live this long, but I showed them up!! They don’t know how I managed to do it, but I have despised all odds and am still surviving.  Yet, it is getting to the point that my luck is running out and without further treatment, I am going to die VERY soon. I can only hang in there so long… especially if I don’t have any treatment.

I have tried every which way to try to raise funds… made a website, tried to contact people through letters and Facebook, tried to contact the media, made flyers, etc. but they have not been successful.  If anything, they might have worked for a few days, but it quickly died out.  I really need help, as time is really of the essence.  I hate to be a CRIER because I never really was, but desperate time comes to desperate measures.  Without the help of others, I fear that I am certainly going to die, as I can no longer afford this on my own.  I look on TV and such and see others being publicized.  I don’t know how they get their stories across and I can’t get mine across.  I just wonder how they do it because there are even some stories that I know are definitely not as bad as mine and my story should definitely be one over theirs that should be told.  Sometimes I wonder why stories that aren’t as “serious” as mine are brought to the media and shown and they are given “help” and “awareness” when I deserve it so much more because my story is really in so much more “need.”  I don’t mean to sound arrogant or selfish or anything, but I just wanna live my life and have my story known and brought to the public so possibly I can raise enough money to continue treatment.  After all, my life depends on it.

I really appreciate everything that everyone has done for me so far… especially my father.  They really have done everything that they can do.  I know that my dad has done everything he could, and I definitely don’t blame him.  I just hope that something turns around because like I said, we desperately need help.  I am so afraid of dying because not only do I not want to die for myself because I have so much to live for, but I don’t want to die for my dad.  I know that if I die, my dad would never recover.  If you have any ideas to fundraise or if you can spread the word of my website or that I am in desperate need of “help,” I would really appreciate it.  Anything that you can possibly do, I would definitely appreciate because even the littlest amount… even $1… would make a huge difference and would help me “live!”  I never thought it would come down to the time where I would be “begging” to live, but it has come down to it finally.  I really don’t want to die.

The call has finally come in from Nebraska.  I have to go to Nebraska because I am really deteriorating and I am in need of a life-threatening intestinal transplant.  I need a multi-organ visceral transplant, which entails getting a new stomach, small and large intestine, and pancreas.  However, this transplant is extremely rare and dangerous and runs the highest rejection rate of all transplants.  Only 8 hospitals in the United States do this transplant, and my insurance company will only cover me in Nebraska and Indiana.  Although I really need to have it done in Stanford, California, I am not covered there.  The insurance company did say that they would cover me there, if I am denied in the other two places.   However, even though they will cover me in Nebraska, it is still really “nothing” because it doesn’t take care of the traveling expenses, the expenses that I incur there because I will have to spend months there (which entails also my parents not working), deductibles, copayments, deductibles, etc.  It is really going to be costly even though they said they will “cover” me in Nebraska.  Even after the transplant, I will have to worry about medication coverage, as the insurance company will not cover my anti-rejection medication and I won’t be able to live without them.  These medications alone will cost me $1000 per month.

Nebraska is known as being the largest hospital to do intestinal transplants in the country.  I am seeing the world renown surgeon known as Dr. David Mercer. I really need a transplant because my entire GI system is paralyzed. When the small intestine fails because of a lack of proper length or the inability to absorb nutrients, a patient is unable to take in adequate calories to survive. This condition requires the use of intravenous nutrition known as Total Parenteral Nutrition (TPN). Long-term use of TPN can cause serious problems, including liver dysfunction or failure.  We have tried various treatments, but nothing has worked.  The only thing left is a GI transplant.

At The Nebraska Medical Center, they offer a comprehensive Intestinal Failure Program featuring medical and surgical treatment options. It is supposed to be the best program in the country. When I spoke to them, they asked me “What my goals were?”  I told them not to laugh, but I told them that my goals were to “go out to eat with my parents and not have people stare at me because I am not eating.”  I also told them that my major goal and dream was to “carry a cup around in the outside filled with a drink such a coffee, ice-coffee, etc. and walk around with it like everyone else.”  I know it sounds really weird to have that as a major goal and dream, but that is something that I really want to achieve.  I know that this is something that people take for granted… drinking… but it is something that I definitely can’t do.  I would love to be able to walk around and able to bring around with me a cup of Frappuccino, a cup of coffee, a cup of ice coffee, etc.  People don’t know how lucky they have it when they can do this.

When I told the staff at the hospital this, they were like “Those are very reasonable and understandable goals.”  They told me that the biggest thing that I will need to do is to “trust” them because I have been misled and misguided so many times before.  They explained to me how so many other doctors have not known what to do with me and have misguided me because they really haven’t seen cases like me before.  They said that doctors really only deal with one case of me a year at the very most.  However, at this center, they see like 10 cases a month of me a month.  So, they understand my condition a lot.  They understand that the cases may not be as severe as mine, but they know what is going on and know that each person needs to be treated “separately” and “uniquely.”  They don’t treat a person like “all you have to do is eat!”  At The Nebraska Medical Center, they offer a comprehensive Intestinal Failure Program featuring medical and surgical treatment options.  These include a “rehab” program, nutritional support, and even transplantation, including isolated intestinal transplant and liver/intestine/pancreas (multivisceral) transplantation, when medical or surgical treatment interventions fail.  They have a goal to have each patient be able to take in their calories by eating and not by tubes or anything.  They don’t want patients to depend on any enteral or parenteral nutrition, which is something I definitely like because I don’t want to have to rely on tubes or not eating. I want to be as NORMAL as possible!! 

The Nebraska Medical Center formally developed the Intestinal Failure Program in 2000 to help with intestinal failure.  Today, the program treats patients from all over the world and has gained global recognition for its innovative and multidisciplinary approach to the care of these individuals.  The program provides a multidisciplinary team approach to intestinal failure, as they have specialists on the team with expertise in hepatology, gastroenterology, psychology, child life and surgery for both adult and pediatric patients. Continuity of care is accentuated with specially trained transplant nurse coordinators, social workers, nutritionists, pharmacologists and patient financial counselors, as well as volunteer services.  What makes it better is that their “survival rates” exceed national averages.  They don’t just treat you and let you leave and forget you.  Instead, the team provides extensive support and education to not only the patient, but to the entire family throughout the transplant journey and even after they return home.

As I have intestinal failure, which is the inability of the small bowel to ingest, digest and absorb nutrients, water and electrolytes required to maintain the nutritional status, I desperately need help ASAP because I am rapidly deteriorating.  I barely weigh 70 pounds and if I was a male, I would surely be dead by now because males can’t exist at the level that I am at.  Luckily, females can exist as a lower level and therefore, even though I am at a BMI of 12.2, females can exist til about 12.  So, as you can see, I am barely hanging in there and time is of the essence. 

So, I was awaiting the call from Nebraska to go to their center because they are supposed to be one of the best and because my insurance wants me to go there for the transplant.  The doctor I am seeing, Dr. Mercer, is supposed to be one of the very best.  His clinical interests center around all elements of solid organ transplantation, with additional focus on intestinal rehabilitation and management of patients with complex intestinal problems such as fistulas and extreme short bowel. 

I never heard of a center that is as thorough as this hospital.  I can’t believe all the testing that they want to do.  Even though they made me send over all my records, which cost me $150, they want to still do their own testing.  I can’t believe that they made me spend all this money for records and yet… they are only going to end up repeating the testing because they want their “own” testing.  They say that they want to make sure it is as “accurate” as possible and they really only know for sure if the results are accurate if they do it themselves.  It just stinks because like I said… I had to spend all that money to send them the results.

I am quite surprised though that they want so many tests to be done.  I guess they want a COMPLETE picture of me, as well as what they are dealing with.  You would think they would only want testing that was dealing with their field, but in fact… they want testing in other areas as well.  Besides all the many GI tests that they want such as the EGD tests, gastric emptying studies, small bowel series, etc., they want bone scans to see how strong my bones are, pap smears, etc.  I can’t believe how thorough they are. They even want dental exam results.  I never really met such thorough people before.  I can just imagine how much this trip is going to cost me because each time I go for a test, I have to pay for a copayment, which is not cheap.

I finally got the phone call that they reviewed my records and they want to see me ASAP.  Ideally, they want to see me next week, but of course that is way too soon.  I mean… I can’t just pick up and go, especially when they are located across the country.  Plus, my dad has to set up the work for his business and try to catch up on some of the work as well because he will be missing out on so much too.  We also don’t even have the money to just “go” right now, so there are many problems that are prohibiting us to going right this minute. 

Yet, we know that time is of the essence and we know how much we really have to get there ASAP.  There are two dates that we are playing around with.  I am looking at going November 5th or November 19th.  It all depends on the money issue and how much money we can gather up.  I kinda don’t wanna go November 19th because that would mean that I would miss Thanksgiving.  I really don’t want to miss this holiday because I have a HUGE feeling that it is going to be my very last thanksgiving and I really want to celebrate it with my family.  Unfortunately, my family will be all separated for the holiday if we go at this time because like always, my dad will be going with me to Nebraska, and my mother and brother will be remaining at home.  My mom did say that we would “celebrate Thanksgiving another day,” but I really want to celebrate it on the actual day.  My parents are trying to downplay the day saying that the holiday is really “no big deal,” but it is a big deal to me and I really don’t want to miss it.  I really want to spend the holiday with my family.

Thank goodness for FACETIME though, at least I get to see my family when I go away. I am so thankful for technology because even though I can’t really be with my mom during my trips, at least I get to see her still.  You can’t imagine how hard it is for me not to be with her, especially when I am going through procedures and surgeries.  So… at least even though she can’t physically be there with me… at last I still get to “see” her instead of just hearing her voice.  It makes such a huge difference.  I never have been so thankful for technology!!

In addition, I am really fearful about going the week of November 19th because I know how very crowded the airport is going to be during that time.  After all… Thanksgiving is the busiest time to travel.  I really can’t be jostled or anything and with all the people rushing and such… I will probably be bumped into very easily. Not only can’t I be bumped into because of my extreme hypersensitivity and the extreme pain that will accompany it, but my disease also spreads through “trauma.”  My disease spreads like a wildflower and even the most innocuous “trauma” such as a simple hug can have the potential of spreading the disease.  Being jostled or bumped into will certainly come with a price tag of having the risk of spreading the disease.  In addition, I suffer from no immune system and if I get sick, I will be in bad shape since everything is magnified to me.  A simple cold to me is like the “flu” and therefore, a simple cold can easily put me in the hospital.  With all the people in the airport and the planes being so “full,” I will really risk getting a “bug” or something, which can really be detrimental to me.  So, I would like to avoid all those risks as much as possible.  Traveling really takes a HUGE toll on me as it is and I would like to make it as “easy” as possible.  We all know that security will be all heightened at this time as well, which will only contribute to further problems.

So… I will let you know what is going on. As soon as I know if I am leaving on November 5th or November 19th, I will let you know.  I also hope that I am leaving November 5th in a way because we have plans to go back to California on December 9th.  I really need time in between to recover, as well as time to regroup on funds. If we go November 19th, I don’t know if I will have enough time to do this because by the time we come home, it will be time to turnaround and leave for California again.  It will also be hard on my father because he can’t be missing so much work because like I said before, the business can’t function with out him and without him working, there is no income being brought in to my family and we need to pay our bills.  Everything is just chaotic!!

I never have been to Nebraska before.  I can’t believe I am going to Nebraska out of all places.  I have become a “traveler” because of this disease.  Unfortunately it has been under these bad circumstances, but I am really exploring the United States.  I am seeing places that I would probably never see if I wasn’t sick.  I mean… who would think I would end up in Nebraska of all places??

It is going to be so cold in Nebraska.  I hate cold and it is freezing there.  When I spoke to them today, the highs were only like 40 degrees.  Gosh… it is only October and the high was only 40.  When I said that was “freezing,” they said it wasn’t “too bad.” Gosh… to think it will only get colder and it isn’t even considered “winter,” I am really going to freeze to death.  I also joke around saying that I am going to “hibernate” for the winter… but that is here in New York where it is warmer.  I don’t know how on earth I am going to manage in Nebraska.  I guess when we go I will be packing winter wear… winter jacket, gloves, scarf, etc.  That is definitely one aspect of Nebraska that I am not going to like!!

When I was looking around in Nebraska to see what was in OMAHA, I saw that there was a zoo there that looked really interesting. You are able to walk across a swinging rope bridge suspended over a tropical rainforest at Omaha’s Henry Doorly Zoo, which looks really awesome.  I also saw that they have a place that you can hop aboard historic train cars at The Durham Museum. It really brought back memories because I remember going to Pennsylvania and going to the train museum because my brother was infatuated with “Thomas!”  This museum houses an extraordinary array of permanent exhibits including restored train cars, 1940’s store fronts, numerous artifacts showing the history of the region, and the Byron Reed collection which includes some of the world’s rarest coins and documents. Nebraska is just a city filled with history, culture and adventure. I would love to go to these places to check them out, but of course we won’t have time.  Maybe when I get better dad can take me there.    

I didn’t realize it but my dad will be in heaven with eating.  When I questioned the hotel on their food, they of course said that they had the famous “Omaha Steaks!”  I totally forgot that this place was famous for their steaks.  When I told my dad about how the restaurant had these steaks featured on the menu and such, my dad was like “I am sure going to eat good when we go.”  Unfortunately I can’t say the same because I really don’t eat red meat.  I have trouble eating anything at all at this time, but even before all this, I don’t eat any red meat.  I just hope that I am going to be able to eat because I don’t know what I am going to be able to get down.  As of now, things have gotten so bad that I can’t eat basically anything.  The only thing that I can swallow is ices (which are medicated) and egg whites.  It appears that anything that has carbs is very difficult to swallow.  I don’t know why.

So, that takes care of that.  Nothing else is really new.  I went to visit my grandma the other day.  I really wanted to see her even though I knew that I shouldn’t be at the cemetery.  I kinda got into some huge trouble in going, but it was definitely something that I had to do.  I kinda yelled at her too for leaving me because we were supposed to “stick together” like peanut butter and jelly.  But I understand that she couldn’t hold out any longer.  At least I know that when I go, she will be there waiting with open arms for me. 

Well… I guess I will be going.  I really don’t feel too well.  I have the doctor in the morning.  My bloods aren’t doing too well.  They are falling and my heart isn’t doing too well either.  Sometimes I wonder how much more I can take. My heart has been through so much and I wonder how much it can take before it will give out.  It is in such a “high risk” level that I can easily have cardiac arrest.  It can easily have an arrhythmia as well.  But what will be will be.

I also have something wrong with my elbow that we don’t know what it is.  It looks like a rug burn or something, but it really isn’t.  We don’t have any idea what it is.  I have been putting lotion on it and such, but it is really “raw” and really HOT too.  I showed it to my parents and they sent me to the doctor.  The doctor didn’t really know what it was and was worried about it as well.  As a result, he sent me immediately to the dermatologist.  Even the dermatologist didn’t know what it was.  She had given me some steroids to take and if it doesn’t clear up in a couple of days, she is going to give me some more steroids to take.  Never a dull moment.

I finally got my flu shot.  It was about time.  The doctors were hesitant to give it to me with my health and everything.  They were afraid with my poor bloods and how I was feeling that something bad was going to happen.  But, we couldn’t wait anymore and they all decided that if I got the flu, it would really be a disaster, as it would definitely “kill” me.  That would definitely do it for me.  So, this was the better of the two evils… so they gave it to me. After all… flu season is just around the corner.

Well… been trying to read a bit.  I have been reading this book called RED RAIN by R.L. Stine.  He used to be my favorite author when I was younger.  I used to read all his books.  When he came out with an “adult” book, I couldn’t resist but to pick it up and read it.  I haven’t read one of his books in ages (of course because he only wrote kids books before and hasn’t written them in awhile).  I also can’t wait to see the new movie called ALEX CROSS.  I am such a James Patterson fan and I love his books.  Even the movies that came out on his books have been amazing.  So… I am awaiting to see that movie.  Of course it will be when it comes out on DVD because I can’t go to the movies to see it. 

Halloween is next week.  You can tell I am getting sicker and weaker because I used to be so into Halloween.  My brother and I used to decorate the house like crazy and I couldn’t wait til Halloween.  We used to go all out with corn stalks, huge pumpkins, decorations, etc.  We used to get this huge pumpkin that weighed so much and would last til Thanksgiving. 

Now it is at the point that I couldn’t honestly care less.  I still haven’t carved my pumpkins and I haven’t hung any decorations.  If it wasn’t for my mom hanging the minimal decorations and putting the three pumpkins outside, we probably wouldn’t have anything.  I just don’t have the energy to anything anymore.  I do wanna cut open the pumpkins though… not so much to make the faces, but I want to make the seeds.  My family loves pumpkin seeds and nothing is as good as FRESH pumpkin seeds that are directly from the pumpkins you get.  It definitely tastes way different than the ones that you buy in a store.  My brother and father can literally go through the entire amount of seeds in one sitting.  I only wish I could eat because I used to love them so very much.  But, I also of course will make a face on my pumpkin as well.  If I am carving them to get the seeds, I might as well make some faces on them too.  I will probably do it Sunday morning before breakfast because Halloween is Wednesday and they become moldy so fast.  This way it will last for Halloween when the kids come trick or treating. 

Well… like I said before… I just gotta hang in there and pray that something is going to turnaround.  Hoping and praying that maybe my family will win the lotto or something because even though that is like picking a needle out of a haystack, it might have better odds at this time than actually “raising” funds because no matter how hard I try… it hasn’t seemed to work.  It might work initially, but it quickly dies out and only works minimally.  Like I said before, if you can please help in any way, I would really appreciate it.  Anything you can do… whether it is by spreading the word, saying a prayer, raising funds, etc. I would definitely appreciate it.  As for now… I just gotta keep my batteries charged because I am the ENERGIZER BUNNY and I keep going and going.

Until Next Time!

– Fallon 

 

 

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September 16, 2012

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Hey-

What is going on?  Just thought that I would touch base a little because not feeling well and haven’t written in awhile.  So… figured that it might be a good time to write a bit because things have been happening and with everything that is going on… I also want to inform you on all that is happening in case something should happen.

Things are getting worse and worse.  My body is getting worse and I am getting weaker and weaker.  Not only am I feeling it in my body, but I am sure you might be able to see it in my writing. I used to be able to blog all the time.  Now, it is at the point where it takes so much energy out of me that I can’t do all the blogging that I once used to do.  So, I want to apologize ahead of time for not keeping you so up-to-date on all that has been happening.  It is just as I said… been really hard for me to do so.

Time is definitely running out.  I know it, the doctors know it, my parents know it, etc.  However, I am still at home wasting away.  I really need to get back to California ASAP because they are really the ONLY ones who can really help me.  However, due to expenses and such, we cannot afford it at the current time.   I have tried (as you know) different ways to raise money, but they haven’t been all affective.  I really hope that something is going to turnaround and turnaround soon because I really need donations and the support of others in order to help me get well.   It is so not fair that my life is in so much jeopardy even more so because of the money issue.  It is amazing how much everything in this world revolves around money.  I only wonder what it would be like if “money” didn’t exist.

My bloods are continuing to get worse and worse.  My heart is literally suffering and the doctors are worried that it is in heart failure.  The term “heart failure” makes it sound like the heart is no longer working at all and there’s nothing that can be done. Actually, heart failure means that the heart isn’t pumping as well as it should be.  The doctors really want to put me in the hospital, but I really don’t want to go.  I know that the best place for me probably is in the hospital, but I don’t want to live my life in the hospital because that is no life to live.  When I came out of the hospital in California, it was only within 5 days that things got so bad that they wanted to put me back into the hospital.  It has gotten to the point that I barely can live my life outside of the hospital.  I know that even if I go to the hospital right now, once I get out… I would only be back to square one again in a few days and then have to return back to the hospital yet again.  The doctors even agreed with me that is no way to live my life, but he also said that at least it is “keeping me alive!”

With everything happening though, I did have a talk with one of my doctors and explained to him how I was feeling.  I explained to him how I didn’t want to live my life in the hospital and how I was kinda happy living at home even though I was literally hanging on by a thread.  I know I am kinda burning the candle on both ends because here is a way to “buy” time and yet I don’t want it…. And yet I am complaining how I want to live and get better, I know… it doesn’t really make sense. But the thing is that I am so tired and everything.  I am tired of just waiting and being disappointed. I am tired of suffering.  I am tired of just “being a body on earth.”  If I am going to be alive, I want to be getting better… I don’t just want to be just stagnant.  You know what I mean?

Anyway, I realized this week how much I wanted to enjoy life and not waste my time in a hospital when I am not getting well.  It is one thing if I was in a hospital and they were doing something to get me “well.” But, for me to go to a hospital and just to stay there to “buy” time or to hold me there and hope I survive until something else comes along, it just isn’t’ worth it.  I know… I am not really making sense, but I just want to get better so badly and if that isn’t possible, I don’t want to waste my life in the interim.  I want to enjoy whatever time I do have left in the interim instead of wasting those days in the hospital.

However, after telling the doctor that, my doctor told me that I really had to go to the hospital because he bloods falling are not something to play around with.  My heart is really in jeopardy and I can easily have cardiac arrest and an arrhythmias because they are so very low.  He said that there are some things you can “play around with,” but the heart and these levels are something that I definitely can’t play with. His answer was that his job is to “entertain me and keep me alive until my next procedure or til the transplant.”

Life is filled with so much joys that I don’t want to miss out on.  This weekend, I did some stuff and it made me realize that I wouldn’t be able to do this kind of stuff if I was sitting in the hospital just “waiting.”  I haven’t had this much “fun” in the longest time.  It was really nice for a change.  I only wish that those days could have lasted forever.

This past weekend was the most awesome weekend that I had.  Even though I am doing worse than ever and can barely lift up my head and so weak… at least I am still here.  I had the most amazing weekend even though I really should have been in the hospital.  On Saturday, I had hot chocolate.  I know it isn’t much, but for me… it was really amazing.  I haven’t had hot chocolate in the longest time.  I didn’t have a lot, but the sips that I had… they were just soooo amazingly good.  It got right to the spot.  It made me realize that if I was in the hospital or if I had the tubes that they wanted to put in… it would never have been possible to have this hot chocolate because I wouldn’t be allowed.  When I get the tubes, I won’t be able to eat or drink again.  So… it was really nice to be able to do this.

In addition, I got to spend some “family time” with my family.  With being so ill and always in the hospital, I never get to do that anymore.  My dad and I are always traveling and my mom and brother are always home.  I miss them so very much.  Anyway… I ended up sitting around the TV and watching the man jump from space.  We didn’t just watch the brief 10 minutes that the actual jump occurred, but we watched like the entire thing from the capsule going up.  It was not only amazing because I got to see history being made, but I got to be with my family doing this. I wouldn’t have traded it in for anything.

Not only are my heart bloods worse, but so are my white count bloods. Something is definitely brewing. Everything is just deteriorating and getting worse. I can’t believe it. My neutrophils and other bloods are deteriorating and that isn’t good because it makes me very susceptible to infections.  Neutrophils, which are produced in the bone marrow and circulate in the blood, are a type of white blood cell. Neutrophils are abundant and make up about 50% to 75% of white blood cells. Neutrophils respond to infection and attack bacteria and other foreign invaders directly.  Neutrophils are the first type of immune cell to respond to and arrive at the site of infection, often within an hour.

If I get sick, it can easily kill me because everything is magnified for me.  A simple cold for me is like getting the flu for me.  So… with flu season around the corner, you can imagine how scared the doctors are because if I get the flu, it will certainly kill me.  I have been too weak and sick to get the flu vaccine, so I am still awaiting that.

I went to the stomach doctor today.  Since I am in New York, I went to my NY GI doc.  Things are getting really bad and I am getting scared.  It is at the point where I can’t eat anything that has carbohydrates.  I can’t even swallow my pills.  I am basically living on egg whites and medicated ice-pops (for my heart).  I am not only suffering from mucous coming out below as stool, but I can’t belch up gas anymore either. It is as if I lost the ability to have that reflex.  It is really uncomfortable and it just isn’t right.  When I told the doctor about this, he too was worried because a normal reaction of the body when you have something lodged in your esophagus or have gas in your stomach is to bring it back up or belch.  I can’t do that anymore.

After speaking to my GI doc, even he says, “what am I waiting for?”  He insists that I really have to move because I am running out of time.  However, of course I am still waiting to hear where I am going because even though California is the BEST place for me, the insurance company will only cover the operation there if Indiana and Nebraska can’t do it.  But even with the insurance coverage, the amount I will need to pay (no matter where I have it) will be astronomical and therefore, I will still need to raise plenty of money before I can even have it.  I have to worry about traveling expenses, living expenses because I will have to stay there for a while, medication, deductibles, appointments, money for doctors, etc.  Nothing is free in life.  Plus, I will also have to worry about my anti-rejection meds afterwards because you can’t live without them and they are not covered by my insurance plan.  That will cost me $1000 a month easy for that alone… not including my other expenses for my other meds. I don’t know how I am going to afford all this.

I am waiting on edge to find out where I am headed.  Even though I am having to go back to Cali buy me time, I really need to go to Indiana and Nebraska to be evaluated.  It really stinks because that is even more money that I have to spend… money that I don’t have.  It is also time that is wasted… time that I am running out of, as well and time that I don’t have.

Nebraska really can’t do the operation on me because they don’t do multi-organ visceral transplants.  I need a new pancreas, small intestine, large intestine, stomach, and possibly a new esophagus.  However, the doctors were thinking about having me as a “guinea pig” and being the first one to undergo a multi-organ visceral transplant there.  I don’t know really about that to be honest with you because it is so risky this operation.  This transplant has the highest complication rate of all transplants and also has the highest rejection rate of all transplants as well.  Therefore, I don’t know if I really want to be the FIRST.

Indiana does do multi-organ visceral transplants, but they have only been doing them starting January.  Granted that these transplants are very rare and only done like once or twice a year in each hospital, I don’t know if I really want to have it done there either because it is still like being a “guinea pig” because hey really just started.

The ideal place for me would be California because they have everything there for me… my entire team.  They are able to handle not only the transplant that I need, but they can handle my underlying neurological disease as well, which is very important.  Even when I had the tubes placed into me when I went to Cali last time, the underlying neurological disease really acted up and they had to deal with it.  Any sense of trauma can stir it up and worsen it… and surgery is the biggest trauma there is… especially this kind of surgery.  Without them intervening when they did, I probably wouldn’t be walking right now because when I went for the operation for the tubes in California the last time, I was unable to walk or even stand afterwards.  My underlying neurological disease is spreading like a wildflower as it is and they have to be very careful with it because once it spreads and worsens, it is difficult to get it under control.  Luckily the team in California was able to intervene and put me into an emergency ketamine coma in the ICU and was able to get me to be able to stand again and such.  I was so nervous.  I thought that it was the end.

All these different places have different protocols as well.  If I go to Nebraska, I will most likely be able to live at home until I receive the call that I get the organs.  Then I would need a private plane to take me to Nebraska because that would be the only thing that they would allow.  Indiana on the other hand would not allow me to remain at home and wait. They want me in the vicinity of 4 hours.  So, it really will be costly either way because it will cost to either move or just to have a private plane to fly me.  But… the first thing is to go there and finish getting evaluated.

In the meantime though, I am really deteriorating.  When I went to the GI doc today in New York, he wants to put me on TPN.  Since I was unable to tolerate the tubes in me when I went to California, they are thinking about TPN even though it really is dangerous because it can lead to a significant infection and stir up my neurological disease as well.  If I do get an infection, it would really be dangerous for me because I wouldn’t be able to overcome it most likely. TPN requires a chronic IV access for the solution to run through, and the most common complication is infection of this catheter. Infection is a common cause of death in these patients, with a mortality rate of approximately 15% per infection, and death usually results from septic shock.

California wanted to try to avoid this as much as possible and therefore, they wanted to try to put me into a coma for like 3 weeks and put tubes in me that way.  This way they would “feed” me and such as if I was totally “dead” and my body wouldn’t be able to really do anything because it would be in a “coma.”

But, of course even if the California doctors do the coma, it will only be temporary. It will feed me and give me nourishment, but it will only be temporary.  With my weight and bloods falling so low, something needs to be done because I am going to die soon.  If I was a male, I would definitely be dead because males can’t live below 13.  Luckily, females can live until they reach 12 and I am about 12.2, so I am hanging on my a thread.  Of course we don’t have any wiggle room though.

Total Parenteral Nutrition is also called TPN. It provides nutrition such as protein, sugar, vitamins, minerals, and sometimes fat (lipids). TPN is used when you are unable to eat or cannot get enough nutrition from the foods you eat. TPN always goes into your vein (blood vessel) through an intravenous (IV) line.  OF course that means that I will need another surgery to put a port into me.  A mechanical pump under computer control is used to dispense the TPN fluid.

There are so many complications from TPN and if I end up on that, I can only be on that for the most about 3 months.  So… time is really of the essence to have another plan in place.  Chronic IV access leaves a foreign body in the vascular system, and blood clots on this IV line are common. Death can result from a clot that starts on the IV line but breaks off and goes into the lungs. Also, TPN increases the risk of acute cholecystitis due to complete disuse of gastrointestinal tract, which may result in bile stasis in the gallbladder.

In addition, my teeth aren’t doing too well either.  My biggest fears with my teeth are starting to come true.  I always have been self-conscious with my teeth, as they look like a Jack O’Lantern. I have always been self conscious on smiling because my teeth are deteriorating and separating and therefore, there are major gaps in between my teeth.  I always had the fear that I would end up losing my teeth.  Well guess what?? It looks like that is going to start to happen.

Due to my stomach issues and the acid eroding my teeth, one of my teeth looks like it is going to have to be removed.  It looks like it is going to be the start of my biggest fear. In the past, the dentist was able to bond all the erosions and such.  However, it has gotten to the point where this isn’t possible anymore.  Even though the dentist is still going to try one more time to save the tooth, he doesn’t think that it is going to be possible.  It appears that one tooth has too much erosion and even has erosion right on the actual nerve. The gums are deteriorating and disappearing so much that they are all exposed. With the erosion right on the nerves, it only complicates things further.

I know that there are dentures that you can get to replace teeth that were once there, but I don’t want to have to have them.  After all, I am only 30 years old.  They are also so uncomfortable and disgusting. I don’t want to even think about having to wear dentures or having teeth that you have to take out of your mouth and such.  I know that there are implants that you can get also, but I know how expensive those are and I know that I would NEVER be able to afford those… so those are probably definitely out of the question.

I told my dad that my entire body is being taken from me.  My dad said that at least I have my “head” still.  I told him that if they had a way of taking that too, they probably would.  I can’t believe how they are decapitating me.  It is like I am not even a person anymore.  Everything that I came into the world with is being taken from me… my organs, teeth, etc.    It is so unfair.

O… wanna hear something so touching?  I never was so touched in my life before.  Someone I know told me that they had it marked on their license when they went to the DMV to have their organs donated so that if they went before I did… then possibly I could have them.  Even if I am not a match or don’t get them… just the offer of this and the possibility is amazing. I can’t believe that someone would do something like that for me.  Some people are just amazing and one-of-a-kind.  When this person told me what she did, I literally started to cry because I was so touched.  No one has ever done something like this for me before.  I don’t knowhow I can ever say THANK YOU to someone like this. What an amazing person!!

Well… that takes care of all that is happening in the health area.  We are just living day to day in the meantime.  We never know if I am going to wake up in the morning or not.  Dad just keeps walking around the house saying, “You should be in the hospital.”  Dad is just so very afraid that something is going to happen to me.

Mom and dad’s anniversary is this coming Friday.  They will be married 37 years.  I ended up saving up and buying them a flat-screen TV because they really needed it.  It was the best gift that they could have gotten.  I never saw my dad so thrilled.  I know that I shouldn’t have spent the money because I needed it for myself, but after all my parents have done for me… it was the least that I could do.  I knew how desperately they needed a television and if I didn’t go and get it, they wouldn’t have gotten it themselves.

The old TV that we had was a DINOSAUR and barely worked.  I also got it because of the money issue.  If nothing else, I have really become money savvy since I got sick.  The old TVs that were “tube” TVs really cost a lot of money to run and I thought if nothing else… it would save a lot of money on my parents’ electric bill.  I was watching a program and they said that when people retire, the cost of the electric bill goes way up if they have a “tube” TV because of the cost to run it.  The cost to run these new TVs are basically next to nothing and therefore, it should cut the electric bill significantly.  I actually can’t wait to get the monthly electric bill and see how much it really did cut it down.

It was really time for a new TV because the old TV  was 30 years old and literally had to be taken out of the house using a pushcart and dolly because it was so heavy.  At least now when they watch TV, they can always think of me.  I never saw my dad so excited.  He wanted to hang the TV on the wall and make it like a movie theater.  He was like a little kid.  He has been so busy with the TV and so excited with it.  All he does is keep blaring the television sound because he can’t believe how good it sounds.  It sounds so realistic and it looks so realistic too.  It is like we are actually there.  Big difference from that dinosaur that we had as a TV.  I am so glad that they really liked it because they really deserved it after all they have done for me

As of now, I really need to get back to California ASAP.  Even though the doctors really want me there already, I can’t afford it at the current moment.  The doctors want me for surgery on November 10th, but that would mean that I would be there for Thanksgiving.  I don’t really want to be there for Thanksgiving because I have a feeling this could be my very last thanksgiving and I wanna spend it with my family at home.  I am hoping to go back to California right after Thanksgiving, but the doctors and my family and everyone else don’t think I will make it that long.  They are probably right, but I am hoping that I can.

I am trying to hang in there as long as possible, but it is getting harder and harder.  I taught my dog how to slap five and posted it on YouTube.  You can check it out at http://youtu.be/Z0tX_-g5zHs and http://youtu.be/A-3KDIzoMIs These are two different videos.  Just a little something we were working on.  In fact, after I got my dog to do it, my parents came home and kept trying to get my dog to do it as well.  Of course no one could do it as good as me.

As things are continuing to worsen, I need the help of everyone that can be wiling to help me.  If you can say a prayer, spread the word that I need help and donations… I would really appreciate it.  My life is really hanging on by a thread and I would appreciate any help that you can give.  I hope I am not asking a lot, but even a simple prayer would be much appreciative.  Thanks again though for your continued support and encouragement.

I will talk to you soon.

– Fallon

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October 5, 2012

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Hey-

I know it has been awhile since I wrote last, but just wanted to post a little update since I haven’t written and things aren’t good at all.  I don’t think this will be long though considering all that is happening, so please bear with me.

Gosh… I never thought it would be like this. Things just continue to get worse and worse.  I am writing because I am awake tonight debating what to do because there are so many things going on and my life is literally hanging in the balance… more so than usual.  In fact, I am actually supposed to be in the hospital as we speak, as the doctors want me there but like usual… I don’t want to be there.  I hate hospitals, and therefore, I really didn’t want to go.  I am really phobic of hospitals, which I know sounds strange because I have been in the hospital so many times already that you would think I would be so “used” to it already.  But… it actually has gone in the other direction. That is one of the reasons why I didn’t remain in California alone when my dad returned to New York.

I am doing so horrible and to be honest, I really should be in the hospital.  However, like I said… I really don’t want to be there.  I honestly shouldn’t have come home from California, but unfortunately there wasn’t any more money left and dad had to come back to work.  The doctors really wanted me to stay there even though my dad was leaving, but of course I didn’t want to stay alone.  I didn’t want to stay because I was deathly ill and I was so afraid that I would “die alone.”  If something happened, there would be no one in California with me or in the vicinity, and it would take at least a couple of days for my parents to come to me since they would be in New York.  I am really not doing soooo well and I didn’t want to be alone there since it was a very good chance that something would happen to me.  After all, I did have to have the paddles brought in while I was there, I was put into emergency ketamine comas, I had severe low blood pressure, my heart rate was constantly dropping, etc.  I had the doctors running all over the hospital with their feet barely touching the ground and they would come back to my room all out of breath and gasping for air.  They even admitted that they saw things with me that they NEVER saw in their life before.  With everything that was occurring with me, I didn’t want to chance something happening and being there alone.

However, things have only further deteriorated since I have been home even though it has only been a couple of days.  It is a shame how my life depends on money so much and is hanging in the balance even more so because we don’t have the money to afford the medical treatment that is necessary to help me.  Even though live in New York, the medical treatment available is no way able in any way to help me.  You would think that New York would be able to help me because it is such a major city and has such top name hospitals and doctors.  However, they can’t. I have exhausted all my resources and therefore, the only possible place for me to go is California.  The doctors there are the most amazing doctors ever.  They are so knowledgeable.  The staff here is so great.  I never had such wonderful people before on my team.  I never was so well taken care of.  The only think that really stunk was that it was on the other side of the country.

My dad says that “I should have stayed in California” with everything that is happening with me. He is probably right because of everything that is happening.  I really am deteriorating and with everything happening, every day is a wonder as to if I am going to make it through.  We never know from one minute to the next what is going to happen to me.  Things just have gotten so bad with me. I can’t believe it.

To begin with… I spoke to the doctors in California today.  They only released me because I made them a promise that I would be back in about 3-4 weeks.  Like I said before, my dad had to leave because we ran out of money.  Dad had to go home and go back to work because there was no one to do that and without him working, no money was being made.  So, we made them a promise that we would return in a few weeks after we saved some money.  Even though the doctors didn’t like this idea because they knew that my life was at stake and how important it was that I get care because they said that I could “literally die any day” because that is how sick I am, they understood that my dad had to return to work and such.  They understood also that I didn’t want to remain in California alone because everyone would be on the East coast and I didn’t want to be on the West Coast alone.  So… I really need to go back as soon as possible, but like I said… it depends on the money because we can’t afford it as of now.

Of course when I go back to California, I have to go back when my doctor is going to be working in the hospital as well.  I spoke to my doctor in California today and he told me that he is going to be working in the hospital starting of the weeks that are of October 20th, November 17th, and December 10th.  He puts in 2-3 weeks each time depending on the time.  Of course October 20th is too soon since it is just around the corner and we still don’t have enough money.  November 17th might be doable, but I really wanted to celebrate Thanksgiving with my family.  This most likely will be my very last thanksgiving, and I really wanted to celebrate it with my family. I was promised that I would be able to have this happen by my parents, but that was a while ago.  Of course now that it is getting closer, my parents are going back on their word and want me to go and get treatment in California instead because my health is more important.  Of course that is all contingent that I get enough money to go by that time as well though.

I would like to go in December, but I know I would never make it that long.  I am so tired of fighting.  I am tired of suffering and just wish this would all go away.  However, I know deep down that I won’t make it til then either even though I wish that I would be able to push it aside that long and try to be a little “normal” and enjoy some quality of life.

But, I did speak to the California doctor and I found out that it is really imperative that I go as soon as possible though.  I learned that my body is really deteriorating and shutting down faster than I thought.  In the two weeks that I was there, my liver and protein bloods drastically fell.  That means that my body is literally feeding off itself and actually breaking down.

According to the doctor, the human body is amazing and it can “adapt” to a lot of situations.  However, I am so sick and such that it can no longer adapt.  It has gotten to the point where my body is just living off itself and breaking down.  A fall in the albumin concentration appears to reflect deterioration.  In fact, the liver stops producing albumin in critical illness: low albumin is a non-specific marker of disease.  Albumin is a protein manufactured by the liver. 
The most abundant protein component of blood, produced primarily in the liver, albumin helps to keep the fluid portion of blood within the vessels, and helps transport drugs and other substances by way of the bloodstream. Low levels of albumin in the blood or its presence in urine may signal edema (the accumulation of fluid) as in pedal edema (in the ankles) or pulmonary edema (in the lungs), which may be symptoms of congestive heart failure, kidney or liver disease.

Albumin is one of the proteins that decrease when the immune system is engaged in battle is a crucial protein called albumin, and that’s where the trouble lies.  Albumin has important duties including: protects easily damaged tissues from the free radicals that can destroy your cells and cause cancer by altering cellular DNA; guards against heart disease by transporting the antioxidant vitamins that help keep the coronary arteries clean, binding up fatty acids that tend to clog your arteries and stabilizing the ratio between HDL (“good” cholesterol) and LDL (“bad” cholesterol); binds up waste products, toxins, and dangerous drugs that would otherwise damage the body and encourage disease. It also detoxifies the fluids surrounding cells.

Besides the falling Albumin level, I am also having a hard time swallowing.  I can’t eat anything.  It is worse than ever.  Whereas before I would throw up everything I ate, I am having extreme difficulty swallowing now.  Whereas before I could swallow to a point as long as I drank something carbonated, it doesn’t even work now.  It started after the operation, but I just thought that it was because of the tubes.  I was having trouble swallowing anything (even my medication), but like I said, I thought it was because of the tubes since the tubes were passing through my throat and such and taking up space.

Yet, since I was home, it has only gotten worse.  I can’t eat or swallow anything.  I can’t eat any carbs whatsoever. The only chance that I have of eating anything is egg whites.  Once there is the slightest amount of carbs, I just can’t swallow it.  Even with a carbonated drink… it just isn’t possible.  I can’t even swallow my medicine, as it just won’t go down.

I spoke to the California doctor regarding this situation and he thinks the disease is rapidly spreading and taking over. He wants to do further dismotility studies and manometry studies.  He really feels like my esophagus is suffering from severe dismotility issues and becoming even more paralyzed than before.  However, the only way to further look into this matter is by me coming to California and like I said before, I don’t have the money at this time to do so.  So… that is just one more reason why I need to raise money ASAP and get to Cali ASAP as well.

I have tried various methods to try to eat again. I have tried buying foods that I LOVED to eat in the past, but nothing makes me wanna eat it.  It just is so difficult.  No matter what I do, it is like hitting a road block.  The only thing I can get down is eggwhites and that is basically nothing.  I weigh less than 70 pounds, so it isn’t like I have room to play around with.  If I lose any weight, it is disastrous.

I really should be in the hospital though tonight.  My bloods have really gone down a lot.  I have been expelling a lot of mucous-like stool, so I am not surprised that my bloods have dropped so much.  I was even telling the doctors and my dad that things have gotten so badly and thought that my bloods dropped even before I got the results.  However, the results only confirmed it.

My bloods are so low that I can literally have an arrhythmia and cardiac arrest at any time.  It is really dangerously low… the lowest they have ever been.  When the doctor got back the results, they wanted me in the hospital ASAP.  That was the first thing out of their mouths.  But, they knew that I didn’t want to go to the hospital and such and after thinking carefully about this, they decided to wait til Monday to see what happens.  They said it was “up to me” because I really didn’t want to go and the hospitals in New York wouldn’t be able to help me anyway.  Since I wouldn’t be able to the hospital that I would actually benefit from (Cali), they didn’t even know if sending me to the hospital in New York would be the right thing because it is very easy for them to make me worse.

My dad wants to know which hospital I would go to. To be honest… the best place for me is California, but since I can’t go there obviously, I don’t know what the next best hospital would be for me.  I was already told my Long Island doctors that Long Island hospitals can’t take care of me because I am too “complicated.”  I would probably end up in Manhattan at Mount Sinai or something because that is where my New York doctors are located.  I would hate to end up there because it is so far from home, but that is probably the best hospital for me to go to if I was in New York.  That is another reason why my dad wants me to go to the hospital now.  He is afraid that something is going to happen to me and if an ambulance comes to me, I will end up in a hospital around my house, which is really not good for me at all.  If I go to a hospital around my house… it will easily kill me because the hospitals are so bad. So… he rather take me when he can to a better hospital instead of risking it and chancing having to call an ambulance and having to go to a hospital around my house.  After all… when you call an ambulance, they will just take you to ANY hospital as long as it is the CLOSEST.  The closest hospital to my house is not so good.  In fact, I always said to my parents that if I am on my deathbed, don’t ever send me there because they will kill me.

So… the doctors gave me more meds to take and are hoping that nothing happens.  Everyone is on edge in case something should happen since I can literally have an arrhythmia or cardiac arrest anytime.  My dad wants me in the hospital tonight because he doesn’t want ANYTHING happening.  He thinks that waiting til Monday is just putting off the inevitable.  He probably is right because the meds probably won’t raise my bloods enough, but I am hoping that they will so I can remain out of the hospital on Monday.

But… like I said before… everything is touch and go right now… so I wanted to write just in case something happened.  I can very well end up in the hospital because of my very low bloods and I can also very well die (even though I hate to say it).  But, hopefully I will make it through this like I always do.  They don’t call me the ENERGIZER BATTERY for nothing.  However, I do know how bad things are and I told my dad to keep the letter that I wrote him and my mom close by just in case something happens. I wrote them a letter telling them how much I love them and appreciate everything that they have done for me throughout my years.  It also gives them instructions as to what to do when I finally pass and where everything is so that they can take care of everything. It also gives them all pertinent information so that there isn’t any loose ends in who to contact and what to do.  My parents opened it up before we left for California, so they know what it says.  They did it because they wanted to make sure that they didn’t have any questions.

On a better note… I just want to share a little tidbit of info.  Remember before I left that I helped save a woman’s life that was hit by a truck and ran over?  Well, I found out this week that she finally opened her eyes and she is going to be ok.  Well… she will be ok in terms of being “alive.”  In terms of recuperating and recovering… he has a long road ahead of her.  She is of course in the ICU still, but at least she is out of her coma and has opened her eyes.  She is still intubated and has many surgeries ahead of her, but at least she is ALIVE.  When I heard this news, I was so happy.  I really was worried about her.  I really hope that I get to see her soon because it would mean a lot to me.

Well… I am going to get going.  I am not feeling well at all.  I just wanted to write so that I can let you know what the latest has been.  With the flu season around the corner, the doctors are scared about giving me the flu shot.  They know that I won’t be able to tolerate the flu at all and if I get the flu… it would definitely kill me.  However, they are also worried about giving me the flu shot as well, because I am not healthy or strong enough by any means.  They are afraid of all the problems that I might gain by getting it. Never a dull moment.

So… I guess it is just a matter of holding on and crossing my fingers that more funds will come my way.  I desperately need them… more than ever… because I need to go back to California ASAP.  My life is literally hanging in the balance and I am definitely going to die soon if I don’t go back to get treatment soon.  When I go back… I know that I am going to have more surgeries.  I know one thing that they are going to be doing will be putting me into a full coma and putting more tubes in me.  They are going to put me in a FULL coma for at least a week and see if my body will accept the tubes because my body wouldn’t accept them last time.  It is like my only chance.  We have to buy time til the transplant.

We also need funds because we are planning on going to Nebraska and Indiana.  We have to go to these places because these are the only places the insurance company will cover the actual transplant surgery.  Even though the insurance will pay for it there (the actual surgery), I still will need lots of fundraising and money to go because I will have to live there for awhile and the expenses that I will have to spend there will be astronomical.  Yet, we are hoping that the insurance company will still grant us the ability to have the full transplant in California since my whole entire team is there.  In Nebraska, I would be the first multi-organ visceral transplant.  They only do intestines and liver, but I need a new stomach, small intestine, large intestine, pancreas, and possible esophagus.  The doctors are willing to try to do the surgery on me, but I don’t want to be the guinea pig… not when it is one of the most dangerous transplants that you can have and there isn’t one done that hasn’t had a complication.  Indiana has just started doing the multi-organ visceral transplants since January and therefore, even though I won’t be the first, I still will be one of the first.  So… it still isn’t sitting well with me.  You know? There are other reasons that would complicate me having the transplants at those locations, but I won’t get into them.  In either case, my anti-rejection meds won’t even be covered after the transplant either. Who would think that the actual meds needed to keep me alive afterwards wouldn’t be covered?  So… that is even more reason why I need to fundraise because those meds alone will cost me at least $1000 a month on top of my other medication expenses.

I should know that things are getting really bad because my cat, Missy, won’t leave my side.  She is simply an amazing cat.  Whenever things get really “bad,” she never leaves me.  My parents can always depend on her to tell them if I am not doing well by her doing this.  She will literally follow me everywhere I go and sit with me everywhere I sit.  Missy is one amazing cat.  After all, they say that animals sense things.  I just love her so very much.  I don’t know what I would do without her.  That is another reason why didn’t want to remain in the hospital in California.  If the doctors said that I am so very “sick” and can “die” any day… I want to be able to spend as much time with my family and pets as possible.  I don’t want to spend my time in the hospital… especially when I can’t even see them because  I am so far away.  It isn’t like they can visit me either. You know?

Well… gonna get going. Talk to you soon.

– Fallon

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