I know I haven’t written in awhile, but I just figured everyone just had enough with my story. Yet, even though I have tried to not ask for ‘help’ from others, I realized that it really is impossible because I really can’t get on and move forward without the ‘help’ of friends. I need them in many ways as I not only need them emotionally, but I also need as many donations as possible because the medical expenses that I have incurred are astronomical and the ones we are going to be facing will be out-of-the-park. I am having a very difficult time getting treatment because I don’t have the funds for it, and as a result, my health is declining. The bills are so huge and medications/treatments are so expensive that we don’t have the money to be able to afford them. I desperately need help, which includes treatments and medications, but we cannot afford the by ourselves. In addition, I just got huge news from my medical team about huge upcoming surgeries and procedures, but they will also be very costly and we won’t be able to afford them without help from others. I will explain more below.
In addition, I realized I also needed to write some blogs about my journey because after careful thinking and lots of soul searching, I realized that I need to write about my story because not only is this an outlet for me to get my feelings across, but it’s a way for others to become knowledgeable about my journey, which is not a journey that a regular person usually has. It is a journey of a brave person who doesn’t let roadblocks get in her way, and it is a journey of a person who tries to persevere over anything that may come her way. If there is something that I can give to the world, it is the ability to show that even though I was dealt a bad deck of cards, I am still trying to persevere and try to overcome this illness as much as possible so that I can live as full as a life as possible. I also thought about doing a YouTube channel, which I think I might do in the future. But at this point, I figured that I would just update all that has been happening with a brief blog.
A lot has been happening since I last blogged. I have been declining and now it is at the point where I am basically living 2-3 days in the hospital per week. I am in physical therapy basically 4-5 times a week because my muscles ae deteriorating and they cannot activate enough to actually ‘build’ muscle. My GI system has also gotten to the point where I am in total intestinal failure, as everything I eat does not get absorbed and basically as it goes into my body is how it comes out. Not only am I in intestinal failure, but my body is failing in multiple ways and I have even been diagnosed with “failure to thrive.” My body organs are shutting down and I have even been told that they only give me at the very most 1-2 years unless something changes.
Recently I went to a surgeon and he said to me “I am looking at someone younger than me who is going to die a premature death if something isn’t done and done fast. I give you only 1-2 years at the very most until you will die if something isn’t done.” It appears that my body is in intestinal failure and it is also affecting all my other organs. I am also starving to death because I can’t absorb anything and as a result, I am also starving my heart. The surgeon said that my heart can’t go much longer being ‘starved!’ We have tried numerous ways to feed me, but all attempts have failed.
The surgeon said that I am very complicated and he will need the help of the entire hospital and every specialty to keep me alive when I am operated because I have more stuff wrong with me than he knows and can handle. But he is willing to operate, but under no circumstances will this be an easy operation. It will be a very long and probably expensive operation because lots of doctors will be involved and I will need lots of care afterwards, which includes supplies that will not be covered by insurance. But the surgeon said that this is something that must be done if I want to be able to stay alive.
It appears that not only will I need my intestines taken out, but my rectum has failed me as well. I have finally build up enough confidence to finally say that I am 35 years old and wear diapers. I have always been so embarrassed because what 35-year-old wears diapers? But I am left to no other option. Since my rectum doesn’t work appropriately, I always end up leaking and having accidents especially at night when I am trying to sleep.
Since I can’t absorb anything, which includes food or liquid, the liquids usually just run right through me and that is why I have to wear diapers. I know it is confusing because it sounds strange how I don’t absorb and I say that everything comes out of me on one breath and then say that I don’t pass anything and have to be emptied in the OR on the next. Let me clarify it. In terms of both liquids and food… nothing gets absorbed in either case. However, liquids are fortunate not to get stuck in my body even though food does. Just as when someone doesn’t have a colon, a person has to drink more fluids than usual because they don’t have a colon to absorb the fluids, my body is behaving as if I don’t have a colon as well. Since the colon is the organ that absorbs the water in the body and since it is not working, whenever I take in water content, it just runs through my body.
Food on the other hand usually will become stuck in my intestines since there is no peristalsis. Although some does come out minimally (and how it comes out is how it went it because it doesn’t get absorbed or breakdown), the majority will remain in the colon. Whenever I eat, my body looks like I am literally 9 months pregnant and ready to give birth. That is why I have to go to the hospital at least once a week into the operating room because I need to be ‘emptied’ so that I don’t go septic. Going to the hospital at least once a week and into the operating room is not a way to live!
I can’t absorb food either and as a result I will need surgical J and G tubes placed in. Yes… I will need BOTH types of tubes because I am in total GI failure and you can only use J tubes and G tubes for certain kinds of foods and medications. Like you can’t put medications in the J tube because it will both bot be absorbed and clog it. I also will use one of the tubes as ‘vent.’ He doctors said that ‘whether I want to acknowledge it or not, I will end up having to have both a J and G tube because I will never be able to eat again. I can’t put it off much longer either because I am starving my body and especially my heart and I am going to die!’
In addition, the doctors said that my intestines and rectum both must come out. I always knew that my intestines were troublesome and would have to come out, but I never knew or expected my rectum as well. It kind of threw me for a loop because by having my rectum taken out, it would mean that I would have a bag for life and it would smash all hopes of ever being reconnected again…. Even when I do have the transplant. So that was a big gulp to swallow. I asked the doctor if I can repeat the tests again just to confirm that my rectum doesn’t work because once the rectum is out, it Is gone for good and is a permanent situation. The doctor said, ‘you can have all the tests till the cows come home, but it isn’t going to change anything.’ But he did say if it made me more comfortable then I can repeat it even though it won’t change anything. He does want to try an interstim, which is a stimulator to finally prove to me though that it is a nonfunctioning rectum.
The doctors really want me in the hospital asap because I need this surgery. The doctors said that I am in intestinal failure and I am in “failure to thrive,” which is leading to multi organ failure and heart failure. They want to put a port into my heart so that they can try to feed me. Nothing I eat gets absorbed, so essentially, I am literally starving to death. Literally. It comes right out of me as soon as I take it basically especially liquids. Then since my intestines are so dead and dilated and extended, it builds up with all this gas and fluid and other stuff that doesn’t move and makes my abdomen even more extended. Since my colon is so distended and so ‘Big’ already, it is already way too big for my little abdominal cavity and it is also putting too much pressure on my organs, which is causing them to have problems and fail as well. Then when I eat something, my stomach and colon become distended because they are basically paralyzed and since it is already swollen and too big for my abdominal cavity, it puts even more pressure on my organs when it swells even more.
Not only am I literally ‘starving to death’ now, but I need to be strong for the surgeries because they are not easy surgeries at all. I thought that since I recovered from the surgery when I broke my hip, femur, and pelvis that I was in good shape. However, the doctor said that even though that was major surgery, it is nothing compared to this. Having GI surgery is really bad and hard and extremely dangerous because you literally have leaking stool in your body and that can easily kill you. In addition, whereas I was maintaining my weight before even though it was so very low, I am losing weight now.
They wanted to admit me asap, but with the snow and everything… it kind of messed things up. Plus, even though they wanted to admit me, I can’t really be admitted until I get some funds to pay for the surgery, the aftercare, and to help pay for the costs when my dad doesn’t work. I know what has to be done, but it just isn’t an option right now when we don’t have the money to do so. I also want to get a psychologist, which is not covered under my insurance because this surgery that my team wants to do is massive and I don’t know if I can honestly handle 2 tubes and a bag. I have been strong throughout this entire process, but I don’t know if I am strong enough to handle all this. In addition, all the supplies and surgery will be so expensive and to be quite honest, we really don’t have the funds to cover everything. I will have to have lots of equipment afterwards, which won’t be all covered by insurance. Plus, even though some of the surgery is covered, it isn’t completely covered by insurance and we really can’t afford the difference. My father will also have to miss lots of work to be by my side especially since he will have to stay in the hospital with me and such, which would mean him missing work as well. My dad has been by my side ever since we heard this devastating news and has been through everything with me to hold my hand through it all. So, there is a big financial component to this as well. So, everything is on hold right now until we get the funds to do all this.
I did speak to the doctors and told them already that when I do come to the hospital for the surgeries and have to stay, I am bringing Scooby. For all that don’t know Scooby, Scooby is my service dog and has been by my side throughout this entire process. He is by my side every day throughout everything I go through and goes with me everywhere. He goes with me to every doctor’s appointment, every hospital visit, etc. He is the best thing that ever happened to me and is the reason I am still here today. Everyone says, “He is the reason why I am still alive because he is keeping me going!” He is a service dog who knows how to sense when I have an attack of my dysautonomia. He is best friend and everything. He is the only thing that makes everything better!
In addition, I recently started another medication called Mestinon, which is used to treat muscle weakness and is a muscle strengthener. Mestinon is a drug that stimulates the parasympathetic nervous system by inhibiting the breakdown of the neurotransmitter (acetylcholine) the PNS runs on. It does this knocking down the enzyme, acetylcholinesterase, that does breaks up acetylcholine. That should mean more acetylcholine availability and more PNS activity – just what the doctor ordered for someone in my condition with dysautonomia and autonomic dysfunction. I think it does help but it has some horrible side effects even though they are starting to get better. I once overdosed on the drug this week because I took it with an over-the-counter acetylcholine inhibitor. Didn’t think it was doing anything so didn’t think it would matter to take them both together. Well I ended up having huge problems. My eyeballs were pinpoint and I couldn’t talk and my eyes were blurry and more. I had to ride it out (8 hours) because that was all that could really be done.
In the meantime, I am still trying not to let it get me down. I still continue to try to smile and try to look the best I can. I got into makeup and have been watching lots of YouTube videos on how to apply it. Not only am I having a lot of fun with putting on the makeup, but my grandma always taught me that “if you look good, you feel good!” When I am all dressed up and have makeup, it makes me feel more ‘normal’ and it makes me feel like I am not as sick as I really am. Plus, it makes it look like I am not as “sick” either. It makes other wonder how “sick” I really am because I honestly don’t want to be known as the “sick one!” Why do others have to know me as being “sick” because I am still me!!
So that pretty much sums it all up as to what is happening. While the doctors are hopeful that they can help me, it is going to be a long road. If you can please help me raise the much-needed funds for my medical expenses because I desperately need them, I would greatly appreciate it because my life depends on it. I cannot get the treatment that I need nor can I get all the medications that I require. We are coming together as a family the best way we can, but we need help. If you can help me out in any way possible we would be forever grateful. I truly thank you for taking the time to read my story.
Please share my GoFundMe link at: www.GoFundMe.com/help4Fallon