FALLON MIRSKY

Please help SAVE MY LIFE!

December 20, 2015

12341599_10101749323244180_2149930459975884141_nHi!

 

Well the countdown is on!  Not including today… 5 more days until Christmas and only 10 more days until 2016.  I can’t believe how fast it is coming.  It is probably coming so fast because this weather has been totally unbelievable.  Forget about worrying if it is going to be a ‘white Christmas!’  We will be lucky if it is even going to be a ‘cold’ Christmas.  Hopefully the weather will stay like this and it won’t get colder and it won’t snow, but I have a feeling that we are going to get slammed once the New Year comes… just like we did last year. Once the snow started last year, we couldn’t come up for air.

 

Hopefully it won’t happen like that and hopefully it won’t happen in January because we are hopefully going to be heading to Nebraska Medical Center, which is known for HUGE snowfalls.  I really need to get to Nebraska as soon as possible and hopefully nothing will happen that will cause us to cancel the trip because I am extremely ill and getting worse.  I desperately need treatment if I am going to be able to see my birthday, which is not too far away (February 7th).

 

I am only hoping and praying that Santa brings me a great Christmas gift on Friday, which of course would be waking up to find me “cured” and able to have my life back.  My entire life was taken from me because of this illness and I have been left with basically nothing. I can no longer eat or drink anything.  I have no social life.  I have no friends, as everyone (both friends and family) have walked out on me.  Gosh you really learn who your true friends and family are when you are sick.  My calendar is all filled up with doctor appointments and procedures instead of with fun social events like it should be for a person my age.  My phone serves the purpose of just being a communication link to doctors instead of being a way to communicate socially with others for fun.  I can’t remember the last time my family and me went out to dinner or even had a vacation (going away to medical appointments isn’t quite considered a vacation because first of all mom isn’t able to go with us due to the fact that someone has to stay behind to watch the business and keep it going, as well as there isn’t enough money to have all of us to go. It is hard enough for just my dad and me to afford to go.  Second of all… it isn’t like going to the hospital and seeing doctors is any fun too!). In just plain English… my life just stinks.  I desperately lost everything… including all my dreams.  I wanted to make a difference in the world so badly.  I had a dream of becoming a doctor so that I could help others and make the hugest difference in the life of someone else and also in society. It is a shame how I worked my butt off all throughout school and got all straight A’s and had a 4.0 GPA in college, but I was then robbed of this dream. I only hope and wish that I get the treatment that I need to be ‘cured’ so that I can not only continue to be able to live my life and reclaim all that I have lost, but so that I can be able to be come that doctor I always dreamed I would be so that I can make a difference in the life of another person.  But of course I desperately need your help if I am going to have that happen.

 

I know deep down that for Santa to bring me this special gift that it would really be a “miracle!”  That is why I desperately need your help. Not only do I desperately need your help if I am going to be able to have my life back, but I desperately need your help just to get me the treatment that I need to continue living. It has gotten to the point that if something isn’t done quickly, I am not going to make it much longer.  That is why I need to get to Nebraska ASAP and I can’t have anything stand in its way. From the last time I wrote… things have gotten realy bad.

 

Since the last time I wrote, I have really taken a turn for the worst.  So much has happened also that it is literally unbelievable.  To begin with, I have developed severe swelling and pitted edema in my lower extremities. My legs literally are so swollen that when I went to the doctor, the doctor and nurses were like “oh my gosh! What on earth happened?  Your legs are soooooo swollen!”  I am literally gaining like 2 pounds a day on fluid.  After seeing the doctor, they believe that I am suffering from cellulitis, which is extremely dangerous and needs immediate attention and help.

 

Cellulitis is a common, potentially serious bacterial skin infection. Cellulitis appears as a swollen, red area of skin that feels hot and tender. It can spread rapidly to other parts of the body. In addition, the area of infection is painful and therefore, it is super painful for me because not only am I extremely hypersensitive so that the slightest touch or pain puts me in horrendous agony, but I am already in excruciating pain already!!  The bacteria that causes cellulitis can spread rapidly, entering lymph nodes and your bloodstream. Left untreated, the spreading infection can rapidly turn life-threatening.  The bacteria that causes cellulitis can spread rapidly, entering lymph nodes and your bloodstream.  It can even spread to the deep layer of tissue called the fascial lining and cause flesh-eating strep (necrotizing fasciitis), which of course is an extreme emergency. However, with my body being the way it is and especially since it doesn’t absorb… it is not going to be easy fighting this.

 

I am in such excruciating pain because of the cellulitis.  Not only are my legs feeling like lead weights because they are so heavy from being filled up with so much fluid.  I am so thirsty and yet the more that I drink, the worst that the pitted edema gets in my legs.  Due to the cellulitis and it causing the autonomic dysfunction to also worsen, it has made it literally impossible to go to the bathroom.  Therefore, I am retaining all of my fluids, which is causing the pitted edema to worsen as well as the pain.  In addition, the fluid is becoming so much that it is spilling into my lungs as well and making it difficult to breathe.  It is just horrible.

 

I spent the entire day in the hospital this past Wednesday. To think… I didn’t even know that I was going to have to spend the entire day in the hospital for IV antibiotics either. I was at the hospital to get my ketamine treatment, but when the doctors saw what was happening, they immediately put me on IV antibiotics.  So in a way I killed 2 birds with one stone. I not only had my ketamine treatment and procedures in my spine, which I was scheduled for, but I had the IV antibiotics too.  What a day it was!

 

I was then sent home with a very high dose of antibiotics.  The doctor also wanted to put me on a diuretic, but I was really hesitant about it.  I heard really bad things about them and therefore, the doctors said that they would hold off on them and see what happens. Yet, with me not being able to absorb, we don’t know if I will be able to be treated with oral antibiotics.  If the swelling doesn’t go away or worsens, I will have to go back to the hospital and get more IV antibiotics.  However, if I do have to go back to get more antibiotics through the IV, I doubt it will be a one-day thing like it was this last time.  I will probably have to stay there for at least a couple of days, which I really don’t want to do.  You would think that with all that I have been through that I would be used to the hospital by now.  But instead it is the reverse.  I can’t stand them.  The more that I am hospitalized, the worst it is getting.  I am literally freaking out when I have to be hospitalized.  I don’t mind going as long as I know I am coming home, but if I have to stay… I freak!

 

I am totally afraid that I am going to have to go back because the pitted edema is still very much there and whereas I was able to urinate on Wednesday and Thursday, it isn’t happening anymore. I guess the oral antibiotics aren’t helping me as much as the IV antibiotics did. I am wondering now if they are helping even at all. I just really hope that they are because I am so scared that something is going to happen like the infection will worsen and could cause me to lose my leg or something, or that I will have to be hospitalized.

 

They aren’t really quite sure what caused the cellulitis.  But they are thinking that it has to do with my failed GI system.  They said that my colon has to desperately come out because of all the toxins it is leaking out and also because it is causing blockages.  That is why I need to get to Nebraska as soon as possible.  I need to get this taken care of because I am in a life-threatening crisis that is a real emergency right now.

 

I also went to have a CT scan on Thursday to further determine what was happening.  Due to my illness, they put me to sleep when I underwent the scan because they needed me to hold perfectly still and I wouldn’t be able to do so because of the autonomic dysfunction and the pain.  In addition, they also had to give me contrast and therefore, they thought that it would help the autonomic dysfunction not going out-of-control and me feeling it when they administered it because the contrast did cause a warm sensation throughout the body, which could easily stir up the autonomic dysfunction and make me uncomfortable.

 

The results of the CT scan were not good and therefore I now have to go for abdominal MRI to further investigate what is happening.  At least they will be putting me to sleep for this as well.  It is such an emergency for this to happen that the doctor is trying to get the authorization to undergo the scan asap. Not only did they find degenerative bone disease and multilevel degenerative disc disease of the lumbar spine with foraminal narrowing narrowing of the spine, they were very concerned with the hyper-enhancement of the small bowel.  They think that I have enteritis, as well as colon mechanical-fecal obstruction that is impeding lymphatic flow.  There is also so much other stuff going on that can cause further problems and infection.

 

The doctors are saying how I need to get the culprit out as soon as possible because it is causing so many problems.  I need to get the colon removed and a new GI system. So I desperately need your help so that I can get the lifesaving treatment that I need. I am scheduled to leave for Nebraska in January and I will need all the help I can get in trying to raise money because it is going to cost a lot.  This is going to be the first of many trips and we will also have to stay a long time there as well because the treatment that I need (even without the transplant) is long.

 

12377641_10101756536029700_279441698030656768_oI can’t wait to get to Nebraska.  Dad and I are going like usual. We of course are also going to take the Scoobster!  I am really happy that we are going because I really feel comfortable there. This hospital is like no other that we have gone too.  Even when I speak to them on the phone, I don’t just feel like another “patient!” They treat me and everyone else like a family member.  Nebraska Medicine transplantation specialists were among the first to recognize patients suffering from the complications of intestinal failure and began performing liver and intestinal transplants. In 1993, we became one of the first medical centers to perform isolated intestinal transplants.  Today, Nebraska Medicine is one of a few facilities with expertise in intestinal failure – and one of the busiest programs in the United States. Innovation, solid outcomes and high patient survival rates have distinguished our center as a leader in intestinal failure.  I have heard nothing but good things about this hospital and my doctors.

 

The intestinal transplant program has a worldwide reputation. They performed more intestinal transplants than any other hospital in the world.  People go from having no hope to realizing that, very likely, they will be able to live and eat normally. So I am really hoping that this is where I will be able to get my miracle.

 

So… this is it.  I just wanted to share all that has been happening.  This will be Scooby’s first Christmas and therefore, I want to make it as special as possible for him.  I have a Christmas sweater for him to wear, but who knows with the weather now if he will be able to wear it because it is soooo warm.  Hopefully he will because it is sooooo cute.  Scooby is my little baby.  I am so fortunate to have him.  He goes with me everywhere and helps me so much get through each day.  Even the doctors say that if I didn’t have him that I probably wouldn’t be alive today. They think that the reason I am holding on and still as strong as I am is because of Scooby.  We do everything together from going to doctors to going to the hospitals to going anywhere and everywhere I have to go.  He even has his own car seat and sunglasses.  We are inseparable.

 

Everyone that sees him falls in love with him because he is like a real life “teddy bear!”  No one can believe how well-behaved he is especially when I tell them that he is only 9-months old. He loves getting dressed in the morning and in fact won’t even go outside to the bathroom until he is dressed.  Scooby is my ‘service dog’ and therefore he can’t be touched really by others because he is technically working.  So at night when we take off his clothes, my dad always teases him by not only telling him that he is ‘naked,’ but he tells him that he can ‘act like a dog again because he isn’t working!’ Scooby is definitely one of a kind.

 

12376278_10101755631916550_3293808737539756810_nScooby can always be spotted in his stroller and since he is so loveable… everyone falls in love with him and wants to pet him.  We had to get labels and tags to put all over him that says “Service Dog” and “Do Not Pet” because like I said before he isn’t supposed to be technically pet when he is working.  He even pulls back when someone goes to pet him and to be fair to him, we got him some tags so people won’t have to bother him anymore.

 

Please help get me the treatment that I need.  I desperately need all the help that I can get in trying to raise money so that I can get the help to get to Nebraska so I can get the treatment that I desperately need, as well as to continue my day-to-day treatment at home.  I am literally watching myself die and deteriorate so fast.

 

Please spread this link so I can try to get as much donations as possible because every dollar is one less that we have to come up with and is extremely helpful. www.gofundme.com/help4Fallon.  Thank you so much for all your support and encouragement. Have a very happy holiday and a very happy and healthy New Year.

 

Love,
Fallon

Leave a comment »

December 14, 2015

12374728_10101750981920180_6113639244543209492_oHi All-

 

Just wanted to write and say HI and catch you up on all that is happening.  Chanukah is almost over and Christmas is about 1 ½ weeks away.  That means that there is only 2 ½ weeks left of 2015.  I only wish that means there is only that much longer left of being left in this “hell” because I am hoping that I will get a “miracle” this holiday season and I will then be able to start 2016 happy and healthy.  I just can’t live like this anymore.  The pain is just too intense and unbearable.  My entire body is literally shutting down and the strength in me fighting is also weakening. I am still my hardest to fight, but I am no longer the “Energizer bunny” that can keep going on and on.  My batteries are running out and running out quickly.

 

I really need help from others before my batteries run out completely and I lose this battle.  I desperately need treatments and medications, but unfortunately without the help of others… it is literally getting impossible to get anything.  This disease stinks because it is so expensive.  I take so many medications that either have very expensive copayments or are not even covered at all, the doctors are not all covered on my insurance plan (and the ones that are covered still have copayments that quickly add up to astronomical amounts because I have to see them so frequently and the amount is not little either each time we see them), have traveling expenses because I have to travel across the country to seek the help of specialists because I am so sick and my illness is so rare that I need such specialized care, and even the procedures are expensive and costly.

 

I really need help and help as soon as possible.  Besides having trouble affording treatment in New York and my medications and everything, we even are going to have to cancel my trip to Nebraska Medical Center in January and postpone it to the end of January.  We were supposed to leave for Nebraska the end of December/beginning of January because I needed to seek the help of the GI specialists there because my colon needs to desperately come out, but due to insufficient funds, we had to reschedule it to the end of January.  I am only hoping and praying that we will have the funds by then because I won’t be able to make it longer than that.  Even the doctors are worried that I won’t even make it that long.  Plus… my birthday is February 7th, and I would really love to be here to see it.

 

Since it is the holiday season and it is the season for “giving”, I am only hoping that perhaps others might help me be able to receive the best holiday gift of all… which is help to get the lifesaving medical treatment/medications/appts that I need to survive and to continue my daily battle.  As this is the season for “giving,” please consider my treatment goal as an option for giving back and making a difference a person’s life during the holiday season.  I can’t tell you what it would mean to me if you would be able to help me out… whether it is by making a simple donation (as there is no donation that is ever too small), by saying a prayer, or even by spreading my “gofundme” link (www.gofundme.com/help4Fallon).

 

So many things have been happening that I am literally freaking out.  My white count has been very elevated and I have had severe pains in my stomach and bones.  We know I have an infection stemming somewhere, but we just don’t know where as of yet.  The doctors are thinking that it can be possibly a bone infection, osteomyelitis, but I need to go for a CT scan to find definitively if it is and unfortunately the insurance company has been giving us difficulty in authorizing it.  We of course can’t afford it without them paying for it and as a result I can’t go for it until then.  So I am basically in limbo until then.  It just really stinks though because if it is a bone infection, which they suspect, it needs to be taken care of asap because bone infections are extremely life threatening and can disastrous if not treated immediately.

 

We also think that something is happening with my intestines. We already know how my GI system and intestines are failing me.  We know that nothing moves through my intestines and that is why every week I have to go to the hospital and have my intestines “cleaned out” in the OR.  I keep having toxins spilling out of my intestines because of all the stuff just sitting in my intestines and it is literally shutting down my other organs.  The toxins are poisoning me and can easily cause me to go into sepsis.  In addition, the doctors are also afraid that my intestines are going to rupture because nothing passes through and that is just another reason why I need to get to Nebraska asap.  I need to get this GI system fixed and the colon removed before something major happens like I go into sepsis or a huge rupture happens.

 

With the white count being so high and there being blood in the mucous and stool, we are already thinking that there is a perforation in the intestines.  However, we are thinking that it I getting worse now and my bloods are really falling.

 

I have a doctor appointment later today to find out about my bloods, but we really think that my bloods are falling.  One of the reasons we are thinking this is because my whole body keeps going into cramps and spasms.  In fact, it goes into such bad cramps and spasms at times (especially last night) that I can’t even walk.  I woke up this morning with them so bad that I almost ended up in the hospital.  These spasms and cramps are like the ones you get in your legs when you are sleeping and you see your body part twisting in one direction when it feels like it is going in another and you can’t untwist it.  You know?  I have been having problems with my hands and fingers having spasms for the past week or so, but now it is in my legs and feet.  Something just isn’t right.

 

In addition, my body is retaining all fluids.  I am filling up with fluids like a water balloon.  I really desperately need to be pop.  Both ankles and feet are so swollen and no matter what I do… the swelling won’t go down.  Even if I raise them… the swelling won’t disappear. I’m scared because I am basically going for through everything that my grandma did before she died. It’s like I am reliving it.

 

My hip is bothering me too. I can’t walk. I went to the orthopedist and he said awhile ago that the screws were loose and coming out but he won’t go back in and tighten them. He won’t replace the rod and the only way he will take it out Is by giving me a new hip (which most people get) … But I’m not a candidate and he won’t do it. So I’m thinking of seeing another orthopedist and seeing what he thinks.

 

In addition, I have also been having vision problems.  I went to the eye doctor and sure enough my vision is being affected by this illness.  I had to get all new glasses now too, which of course is a disaster too because my lenses aren’t cheap.  Unfortunately, due to my illness, I have to wear prisms and have a very complicated prescription that makes my glasses extremely expensive.  Just the lenses alone cost nearly $1000.  What makes it worse too is that you can’t just have one pair either because you have to have a spare in case something happens to one.  After all, you can’t be left without glasses because that is the only way you can see.  You know?  So… I just don’t know what to do because I desperately need glasses so I can see, but as I said they are just incredibly expensive and I need 3 pairs (2 glasses and sunglasses).  I can’t go into the sun without sunglasses because I am so hypersensitive and the sun will literally kill me.  I just can’t catch a break.

 

So that takes care of everything.  Scooby has been keeping me busy.  It is his first holiday season so I am trying to make it as special as I can for him.  I can’t remember the last time we celebrated a holiday in my house because of everything that is happening, but I want to make this holiday season special for Scooby.  After all, Scooby is like my little baby.  There is nothing that I wouldn’t do for him!!  He is the coolest dog. He loves wearing clothes and he even has his own sunglasses.  Like the doctors all say… if I didn’t have him, I probably wouldn’t be here today.  They all think that the reason I am holding on and keeping going is because of him.  They think that the only reason I made it through the operation for my hip was because of him.  Perhaps they are right!

 

12356860_10101750980537950_1220535802243015754_oScooby is just one amazing dog.  I just actually found out that he has one of the longest lifespans, so I am really excited because that means he will be around for a very long time.  He is being trained to be a “Service Dog” and he is doing amazing.  When we go out to appointments and other places, he acts so good that everyone can’t believe how well he behaves. He really is terrific.

 

Well… I guess that is about it.   I just wanted to update on all that is happening.  I want to wish you a very happy holiday season again and hope that you get all that you want for the holidays. I am only keeping my hopes that I will receive my miracle this year. Keep those fingers crossed and please pray for me.  If you can help me out in any way possible… whether by donating, praying, or spreading my link (www.gofundme.com/Help4Fallon), I would really appreciate it.  Thanks again for all your support and encouragement.

 

Love always,

Fallon

 

 

Leave a comment »

December 6, 2015

12339316_10101743895072280_6246288632627662300_oHey-

 

Well… I am officially back from Ohio and I wanted to write to let you know all that has happened, as well as to wish you a very Happy and Healthy Holiday Season.  I can’t believe the holiday season is upon us already and 2016 is less than four weeks away. I only pray and hope that 2016 will be a great and amazing year for both you and me.  I only hope that 2016 is filled with happiness, good health, no pain, and of course prosperity.  I have been suffering so much that I really hope that 2016 will really be the year that starts a brand new life for me.

 

I can’t remember the last time we celebrated the holidays.  Due to my illness… life in my family has taken a drastic change and life is just not the same. We don’t do things like we once did like go on vacation or celebrate the holidays. In fact, I can’t even remember the last time we even went out to a restaurant for dinner.  All the happiness that was once in my family has been taken by this family as this illness has become nothing but a heavy burden on all of us.  Not only has it been directly affecting me because I am the one afflicted with the illness and dying, but my entire family has been struggling with it as well along with me for the duration that I have had this horrific illness.  This illness has really taken a huge toll on my family both financially and emotionally

 

Due to how expensive the cost of this illness is, it has put so much pressure on my family to try to get the funds in order to afford the treatment to save my life.  However, I have been suffering so much and for so long that there comes a time when the money just runs out because money can’t last forever. After all, it isn’t like we have a money tree in our backyard.  So we have given up everything that we could… vacations, going out to dinner, celebrating holidays, etc. just so that we can try to put all the money towards getting the treatments that I desperately need.  However, even by doing this… it is literally impossible to get the treatment because it isn’t nearly enough.  We desperately need the help of others in order for me to get this treatment because we can’t afford it ourselves.

 

So I am only hoping that this holiday season that others will find it in their heart to help me receive the medical treatment that I desperately need to live.  I know I am asking a lot and I don’t mean to sound like a crier or beggar, but getting donations so that I can get the treatment and medical help that I need would be the best gift that I could ever get.  I only pray that perhaps my miracle can come this holiday season and that I will finally be able to get well because if I don’t, I fear that I won’t see the next holiday season.  I am just deteriorating too fast at this point and things have gotten soooooo bad that it is unbelievable how bad it can be and yet I am still living and pushing on.

 

I can’t believe that I am still pushing on despite how bad things have gotten and how badly I am doing.  But it is because of my family and great people like you that I am still going.  Even the doctors are shocked that I am still alive.  Never before did they see someone as sick as me, with a BMI as low as me, and a weight of being only 60 somewhat pounds still alive.  Yet… I am still pushing onward hoping and praying that my miracle will soon come about and I will be able to get back the life that I was robbed of.  I have so many dreams and aspirations and so many things that I have not been able to do.  My time on earth is not done yet. So I keep hoping, going and pushing onward

 

So If you can please help me achieve my miracle this holiday season by helping me get the medical treatment that I need to live… I would appreciate immensely. Any donation is greatly appreciated and no donation is ever too small. Please donate at www.gofundme.com/help4Fallon.  If you have any questions or have any ideas on how to fundraise or receive more donations, feel free to also contact me at Femirsky@gmail.com.  Please spread these links to as many people as possible because I am desperate.

 

I also need donations so that we can afford to go to Nebraska.  We just got back from Ohio a few days ago, as I was at the Cleveland Clinic, and now it appears that we have to go to Nebraska.  We barely made it to Cleveland because we didn’t have the funds.  There is no way we are going to make it to Nebraska without help and I definitely need to get there because I will die if I don’t.  We are scheduled to leave January 10th, so that gives me about a month to get the funds.

 

12309910_10101744551272250_3757158470662705226_oUnfortunately, when we went to Cleveland, we were told that I got too sick for them to do the procedure that they originally wanted to do, which was to first remove the colon because it is completely useless and diseased (so I can easily rupture it and go into sepsis) and causing so many other problems in my body like putting pressure on my other organs and causing them to fail such as with my heart.  After that was supposed to happen, I was supposed to have a multivisceral organ transplant, which consisted of getting a new small and large intestine, stomach, pancreas, and liver because my entire GI system is gone.  This was all supposed to start taking place awhile ago when I was much stronger, as I have deteriorated a lot over the course of time and a lot has taken place. We didn’t have the funds right then to have the surgery right away and since no one does nothing for free, we of course couldn’t have the surgery at that time.  Plus, who would think that in the course of waiting to raise the money needed for the surgeries that I I would need to have major surgery to repair the fracture to my hip, pelvis and femur, which took a huge toll on me.  So with everything happening… I just deteriorated so much that the original plans couldn’t happen anymore.  I now need to now go to a hospital that is even more specialized supposedly and better able to care for me, which is the hospital in Nebraska.

 

Dad, Scooby, and I went to Ohio last week with great hopes that something was going to be able to be done and I was going to get better.  What an adventure it was!!  This was Scooby’s first plane ride and not only was I nervous for going to the hospital for myself, but I was nervous about how Scooby was going to take the entire trip… especially the plane.  But boy… Scooby really surprised me big time.  He took the plane like a real ‘trooper!’  Everywhere we went… whether it was on the plane, to a restaurant, in the hotel, in the hospital, etc. we kept getting compliments on how well-behaved and amazing Scooby was.  In fact, I even had him wear a diaper on the plane and in the hotel just in case because you can never be too careful.  After all… when you are on a plane you can’t tell the pilot to ‘land the plane, my dog has to go to the bathroom!’ But to our surprise he never had one accident for the entire trip, and he would not go to the bathroom from like 8 AM until 4 PM.  He was just simply amazing.

 

12273623_10101742630311870_1055272903851656041_oI made sure that Scooby was well packed with anything and everything that he could possibly need.  Whereas dad and I shared a suitcase, Scooby had his very own.  After all, he had to bring all his clothes too.  In fact, he even was helping me pack his suitcase when I was packing it.  It was so funny. Then when I was all done, he even tried to pull it along.  I had to keep telling him “not now Scooby… we aren’t leaving!”

 

What a trip we had. We had a stopover in Chicago on the way to Cleveland and they ended up leaving Scooby’s stroller there because we gate checked it.  I was literally freaking out when we arrived in Cleveland and there was no stroller for Scooby.  After all, Scooby loves that stroller and he basically lives in it.  He doesn’t go basically anywhere without it because he sleeps in it and feels more confident in it and everything else.  Plus… I needed that stroller to because I use it as a walker too.  I can’t really walk myself and using the stroller as the walker is much easier because a traditional walker is too tiring because it doesn’t really move because it has no wheels or anything, and a rollator is too big and heavy to use especially when I am so small.  The rollator is nice when I am home and don’t need to transport it, but when I have to go someplace and bring it…it is so big and heavy.   So basically I was freaking out when there was no stroller to be found.

 

Yet when I went into baggage to file a claim, Southwest told us that it was left in Chicago and will be on the next flight here and they would deliver it to the hotel.  I was so relieved because we both needed it.  However, to make a long story short, the stroller never showed up by 1 AM and after calling them over and over again, they finally brought the stroller at 2:30 in the morning.  I never saw Scooby so happy! He ran to it when he saw it.  However the stroller did break when they had it so I am going to see if I can file a claim and if they can do something about reimbursing me for it.  Can’t hurt to try.

 

12307308_10101744242840350_7590185696190261707_oScooby had such an amazing time though. We all did.  Even though we were there because of the hospital, we still tried to make it as ‘fun’ as possible. In fact,  Scooby and dad would have races up and down the hallways.  It was so funny to watch.

 

In terms of what happened though at the doctor, we learned that they did have this new machine out there would act like a stimulator and be placed in my sacrum.  It would function in a way so that I don’t leak any mucous and help with the peristalsis in my colon and rectum.  I was really excited about this idea because it would stop me from having accidents and wearing a diaper at times. However, upon examining me afterwards… the doctor saw that there was no place whatsoever to put the machine.  I had no body fat whatsoever to hide it or anything.  SO there went that idea.  The one thing that I was absolutely happy for and wanted.  I couldn’t get.  I asked about plastic surgery, but they said it was impossible

 

Then the doctor moved on to the next area of business, which was to remove the entire colon.  Originally the plan was to remove the entire colon and then hook up the small intestine to the rectum. They would then try to get me stronger because they were hoping that the small intestine wasn’t as bad as they were thinking and it would possibly function better without the large intestine. They wanted to do this so that I would hopefully be able to become stronger so that when I underwent the multivisceral transplant that I would be able to survive it because it is extremely dangerous and risky.  Only 6 hospitals in the country do it and it is supposed to be the most dangerous transplant you can have.

 

However, as I stated previously, too much time had passed between trying to find the money for the surgery and then breaking my hip, femur and pelvis and recovering from that particular surgery and as a result, I got too sick and weak for them to undergo the removal of the colon.  This surgeon just didn’t feel comfortable enough doing it and rather would have given me tubes and bags instead, which is something I didn’t want at all.

 

This surgeon was really scared that something was going to happen if I had it done in Cleveland because I wasn’t strong enough to undergo a huge operation to remove the colon.  Therefore, she proposed giving me a bag like an ileostomy and then putting tubes in me as well along with vents.  The tubes would be to put stuff into me and pass things along and the bags of course would be used to take things out.  They would also put vents in me because if I should get bloated or anything, I would then be able to open the vent up and release the gas. Basically I would be a walking machine…. Especially between all that and then the rods in my leg.  I am like no longer human anymore and I am becoming more and more like a machine.

 

The tubes, vents, and bags would be placed in me in a way to kind of mimic a digestive system in me, as it would make it so it would bypass my real digestive system.  The goal would to have me get stronger through this method and then once that occurred, then they would first proceed with how they originally intended, which was to first remove the colon and then they would get ne even stronger, and then they would do the transplant.  So basically this would take a while and it would be a never-ending procedure. There is also no guarantee that I would ever be strong enough for them to take out the colon.  In addition, I can easily die while I am getting supposedly stronger from this because in the meantime that they are feeding me and building me up through my ‘alternate digestive system,’ I am still going to have my colon, which is still going to continue to cause problems and will still eventually kill me.  However, they are hoping that with it not being so much in use, that it won’t happen so quickly and hopefully nothing will occur with the colon such as it rupturing or me going into sepsis even though the colon is ‘dead!’

 

I really don’t want to have bags and tubes coming out of me everywhere.  That is not a way to live.  I am only 33 years old and I have suffered enough as it is… to me that is only further suffering.  Not only would I have bags and tubes coming out of me, but I would also be constantly hungry.  Although they would be technically feeding me through the tubes, I would still be hungry because it wouldn’t register with my brain since it isn’t passing though my mouth and my stomach and other organs.  So what type of life is that?

 

So the doctor is sending us to Nebraska where there is a hospital that is supposed to be like the #1 hospital in intestinal rehab and transplants.  In 1990, Nebraska Medicine transplantation specialists were among the first to recognize patients suffering from the complications of intestinal failure and began performing liver and intestinal transplants. In 1993, they became one of the first medical centers to perform isolated intestinal transplants.  Nebraska Medicine is one of a few facilities with expertise in intestinal failure and a leader in intestinal failure, as well as it is one of the busiest programs in the United States. The survival rates are very high there.  In fact, they have been calling me for years and trying to get me to come to see them.  So we leave January 10th to see what they can do for me.

 

12303926_10101743505003980_968991317369711156_o-1So that appears to be all that is happening.  I desperately need something to be done because I am rapidly deteriorating and I definitely won’t see the holidays next year if I don’t get treatment and get better now.  I am getting the worse debilitating pains in my life that all I can do is crawl I in a ball and cry.  Plus we know something is wrong and that I have an infection somewhere because my white count is so incredibly high. We are really racing against the clock.

 

So perhaps I will get the best gift this year.  Perhaps I will get my miracle. Keep those fingers crossed and please pray for me.  If you can please spread my link (www.gofundme.com/Help4Fallon), I would really appreciate it.  Thanks again for all your support and encouragement.

 

Love always,

Fallon

 

 

Leave a comment »