What is going on? Another day in California seeing more doctors. Since more has happened and I promised that I would keep you updated… here is the latest! My life is like a soap opera… never a dull moment!
It has been another day in California. I am barely holding up anymore. It has just been seeing countless amount of doctors and spending countless hours in the hospital. We literally wake up, eat breakfast and leave straight for the hospital. By the time that we are done, we come straight back to the hotel because it is so late. We then eat dinner and then we get ready for the next day. We have been so busy that we have had absolutely no time to sightsee or take advantage of anything that San Francisco has to offer. The only sightseeing we do is what we see from the car as we travel to and from the hospital. I still want to go and see the GOLDEN GATE BRIDGE, as the last time I came here, it was completely fogged over. My parents say that it is “no big deal” to see the bridge because it isn’t even made out of real “gold,” but I still want to see it. I also still want to see the Sea Lions, as I didn’t see them in the past times that I have been here either. Even though I did manage to make it to the end of the dock last time we were here, which is where they are located, they weren’t out. So… it is still on my BUCKET LIST to do. Gosh… I have so much to do on my BUCKET LIST because my disease has limited me so. There is so much that I want to see and do before I die, and I am really hoping that I get that opportunity.
So scared for tomorrow. Tomorrow is the BIG day. I will basically know tomorrow if I am going to LIVE or DIE because I am meeting with the transplant team. I am so nervous that they are going to turn me away. I am so nervous that they aren’t going to accept me. If they don’t… I am going to be given my death sentence. I am surely going to die. I don’t know what I will do then. I am really trying not to think about it, but I know deep down that it is going to come down to that because “shit” always happens to me. Nothing ever works out. It is like the brain surgeon said to me the other day… whenever something comes about to “help” me… there is always something that stops it from happening. I am starting to think that I am not “made” to live. I am trying to keep a positive attitude… but it is soooo hard. But… in a few hours, I will know for sure where my destiny will be.
I am so worried that I won’t get the transplant because of my medical history. It stinks because I so desperately need it and yet, my medical history might prevent me from getting it. I have an underlying neurological disease that makes me take medication… medication that has the possibility of “killing” the new organs that I receive. Therefore, I don’t know if that will disqualify me from getting the transplant. I understand that they don’t want to “waste” organs on me if I am only going to RUIN them, but don’t they realize that if they don’t give me the organs that they are giving me a definite LIFE SENTENCE? I am definitely going to die for sure!! Therefore… shouldn’t they at least give me the “chance” to live? I mean… even if I get the transplant and I do “hurt” the new organs, perhaps something new can come about during that time that can possibly help the underlying neurological disease and therefore the new organs won’t be harmed. They are coming out with new medical technology every single day. Perhaps with them “buying” me more time or allowing me to “live,” they would be able to come up with something also. So… in that sense… wouldn’t it be a good idea to give me the organs either way? I am just so very scared that they will not give me the organs.
In fact, the doctor’s office called me today to go over everything and confirm the appointment. It is going to be a long appointment tomorrow. I am definitely going to need you to talk to afterwards… especially if things don’t go well. They told me that it would easily be a 2 hr. appointment. They reminded me to also write down all of my questions so that I can ask them. I am so nervous about being “turned away” that I said to the person making the calls that “please don’t turn me away so fast. I really need your help. Please help me. I am so desperate. I am going to die.” So… we will see what happens. Only a few hours left.
In the meantime, I of course had more doctors to see today. I saw the doctor today for the ketamine. The doctor I saw today was going to deal with the underlying neurological disease. I am so glad that I came here because this place is simply amazing. I was originally going to have to go to Florida afterwards because I was going to have the more intensive ketamine coma so that hopefully my neurological disease could be “helped.” However, we found out that Stanford is the BEST place to be because they have all this cutting edge technology and they are definitely probably going to help me the most. The only horrible thing is that they are located across the country. It also means that I will have to constantly travel back and forth to California, which will mean so much money needed to be spent.
This is definitely money that I don’t have and therefore, I definitely have to find ways of getting it. But, if these doctors can help me with the underlying neurological disease, then perhaps I can come off of the medication and then it will allow me to have the transplant. It will be a HUGE process, but it might be just the only thing that will save my life. You know? If getting off the meds that will “kill” the new organs might be the only answer to getting the transplant, then something is going to have to be done especially for the neurological disease, which is extremely rare and has no known cure. However, even though on the East coast they thought that ketamine was the answer, even though it didn’t “cure” it, they have state of the art treatments here that they are pioneering.
I can’t believe how this hospital is so much different than any other place that I have been in the past. The doctors here are amazing. I met with the doctors and they have plans for me that no other doctor has. Perhaps they might be able to help me the most. However, like I said before, it will entail traveling back and forth a lot to California in order to get that treatment, but it might be my only chance of getting my life back. You know? as of right now, I have to go and get a psych evaluation because no matter what treatment I pick, they are all extremely risky and radical. They all have the potential to be extremely dangerous and they have to make sure that my mind is “sound.” They told me that if I have something “deep seeded” that I am suppressing or something, these treatments can really cause them to come out and stuff. They really have to make sure that I am ok from a psychological point of view.
The only horrible part is that none of these treatments for this part is covered by the insurance. So… I don’t know how on earth I will be able to afford this. This stinks because everything revolves around money. Even though it is being done at a famous hospital such as Stanford, it is considered EXPERIMENTAL and therefore, the insurance company is not going to pay for it. The doctors said that they can fight for the insurance company to pay for it, but they will only lose in the long run. These are going to be extremely expensive treatments too and therefore, unless I come into a rich person or inherit a huge amount of money, I don’t think that it’s going to be possible to undergo these treatments that can possible save my life. So…like I said before… every time I get some “good” news or something that can help me… I always hit a brick wall and there is a down side.
All the doctors agreed and said that I am one of the sickest patients that they have ever seen. Their hands are really tied too because a lot of options that they have are kinda eliminated because of how much I weigh and everything. They thought about putting in a “pump,” which would be able to give me medication that are not available in pill form and meds that won’t harm organs and such, but I can’t get the pump because of how small and skinny that I am.
There is just no place at all to put the pump in me. I told them to go and do some plastic surgery on me. They laughed, but they said that it really was impossible. They did think about putting the pump, if necessary, in my butt… but they didn’t particularly seem enthusiastic about the idea or think it was a good idea either because even in my butt, there isn’t a lot of padding or anything. They are afraid that the pump is just going to erode right through my skin or cause some really major infection or some other problem.
The doctors can’t figure out why I didn’t get the pump sooner when I could have gotten it because I was ‘heavier’ and there was room in me to put it in. They asked me “Why no other doctor gave me the pump sooner when I was bigger?” They asked me “Didn’t a doc suggest a pump a while ago when you were bigger and able to get one?” The truth is that even though I live in New York and you think that New York has such great doctors, they really don’t compared to here. They kept putting me off… saying that they would try opioids and other stuff that potentially could hurt me and cause other problems. They were all going at it the “wrong” way and therefore, they wasted time. They never really wanted to operate and now when someone does… they wasted so much time and now it is too late. So… they really wasted the time that kinda could have saved my life awhile ago and helped me. U know? But can’t cry over spilled milk. Right? But…gotta work with what I have now. Right?
So… since I can’t get the “pump” there has to be some other ideas. Thankfully STANFORD has them. I really need to get back to STANFORD to get them though, but it will be time and money… both which I don’t have a lot of. Anyway… if I should pass the psychological exam, which I don’t see why I shouldn’t, the first mode of treatment that they are going to do is put me in the hospital and give me SNAIL VENOM. I know… it sounds really weird, but it is true. They are actually going to give me SNAIL VENOM. They are the ones pioneering this treatment, but it has been highly effective. It is actually called ZICONOIDE. Although they prefer to put it in pump so that I can be given it continuously, they doubt that it will be possible because of the reasons I explained before. Therefore, they will be giving it to me through my spine and hopefully it will help. They said it won’t “cure” me or anything, but it will help me for about 3 months or so. In this way, I would be able to go down on some of the meds as well, which are the meds that are killing my GI system on top of the autonomic and gastroparesis already killing it. But can you imagine… snail venom?
Snail venom is for severe pain who cannot take other treatments or when other treatments (like oral narcotics) are no longer effective. It works by directly blocking pain signals. However, it is extremely dangerous and that is why I need to have a psych evaluation and everything. So… we aren’t playing around with a everyday or easy drug. This drug may cause very serious or severe mental symptoms and neurological problems. It can also cause psychosis as well. I would have to be monitored very closely by a doctor because it could very easily lead to confusion, make me less alert, hallucinations, changes in mood or consciousness, etc. I can also develop mental symptoms or neurological problems, including depression or thoughts of suicide. It can also cause serious muscle damage and damage to the kidneys. The most common side-effects of the snail venom are dizziness, nausea, confusion, headaches, sleepiness, problems with vision, and weakness. But the upside of this is that the treatment can be interrupted or stopped suddenly without experiencing withdrawal effects. In the event of any serious neurological or psychiatric signs of symptoms occur, this therapy can be interrupted or discontinued abruptly without evidence of withdrawal effects. So that is one good thing. You know?
Although the mechanism of action of the snail venom has not been established in humans, the snail venom has been shown to directly block the nerve channels that help transmit pain signals as they travel up the spine. This direct blockade has not been shown to weaken over time, which is an additional benefit because it means that I won’t build up an intolerance to the drug or anything. In studies, patients who slowly increased their doses of this snail venom reported an average of 2.4 times the reduction in pain by week 3 of treatment, compared with those in the control group. Patients experienced a 24% reduction in non-pump narcotic use, compared with a 17% reduction in the control group. So… those are good numbers.
So… if and when I decide to go down this route and get enough money… I will come to the hospital to have it done. They will put me in the ICU and they will do it. Then if that doesn’t work or if it isn’t as effective as they want it to be, they will do a very intensive ketamine coma. However, the ketamine coma is not covered by the insurance either and will also be very expensive. They kinda want to stay away from the ketamine because it “messes” around with your brain. It is like LSD and they want to do stuff that will have the least affects on your brain and stuff. Plus, they don’t want me to become dependent on a drug and they think that ketamine is one drug that I will become dependent on because I will have to come consistently back for “boosters”… all which will be more money and more time It also will not last that long in comparison to the snail venom and therefore, the snail venom is the prime choice.
So… if I decide to go through with the ketamine, which will be in place in case I don’t have good results with the snail venom, it will entail me receiving high doses of ketamine in the ICU for about 10 days. It will be extremely risky and dangerous, but it will be my only chance. The doctor said that I will have to be in the ICU because I will need to be very CLOSELY monitored. So… now I have that to consider as well.
They probably can do the snail venom as soon as I go for the psych consult, get the approval that I am “sane”, can come back for the treatment, and of course pay for it. The big thing right now is first having the psych consult. I asked if it can be done at home because it is really a hardship to continuously travel back and forth to California in time and money, but they said that I can’t. The psych clearance MUST be done here. However, the clearance and the treatment cannot be done during the same visit and therefore, it would mean that I would have to come at least 2 times at the very least. So… it is definitely going to be very expensive.
So… as I said… the first step is the psych clearance and to get that, I have to wait a bit. They are very “booked” and although the doctor put in the recommendation and prescribed it to be done as an URGENT request, the soonest they really have is the end of September/beginning of October. The doctor doesn’t really want me waiting that long, so he is going to see what he can do about getting me in sooner. After all… you know when doctors talk to doctors… they always manage to get patients in sooner. However, that will also mean that I will have to come up with money sooner because I can’t just come back here for “free.”
So… I will really have to find money quickly too because without the funds, I can’t come back either. So… it isn’t so easy either. I was hoping to be able to see the psychologist and have the clearance possibly tomorrow before I went home this time, but they are totally booked and with the holiday being this weekend, there aren’t a lot of psychologists around. Therefore, the doctors are seeing what they can arrange, but they doubt that it will happen. It just stinks that I will have to wait and come back because I can’t have the clearance and the procedure the same time. I don’t know how on earth I am going to afford coming back so many times. I also don’t know how my dad is going to arrange taking off so much from work because without him working, the business really suffers and will go “under.” It also means that we don’t get any income or money into our family to pay the bills too. So… it really complicates things a lot.
However, I still have to come back in about 3 weeks for the tube surgery too. Remember? They still want to put in that tube for me and see if they possibly can get some food into me and “buy” me time that way as well even though they think it will be totally unlikely that it will work. Yet, they are wanting to try anything. Even though they know that my entire GI system is dead, they are hoping that if they bypass the stomach and intestines (well actually put the tube low enough into the intestine), they might find a little portion that is viable and able to accept food. But… their gut feeling is that it won’t work, but like they said… gotta go in with a “positive” attitude. If it does work, then they will do a huge surgery and instead of having the tube going up my nose and through my stomach and intestines (to bypass it), they will have it just come out of my abdomen. But, they don’t want to give me a major surgery that is unnecessary. U know? After all, surgeries are really dangerous to me, especially when any traumatic event can cause my disease to spread and surgery is extremely traumatic.
So… we are thinking that when I come back for the tube, they will do the psych clearance then. I would have definitely liked to try the snail venom then or something to try to relieve me of some of this pain and such, but even these doctors said that if I had the clearance today and such, the GI team is not going to want to do their procedure the same time as I go for the snail venom and ketamine. They want to do one thing at a time. So… it is also… which is more important to do first? The tube which can potentially buy me more time because I need to gain weight because if I don’t… I am surely going to die because my levels are borderline as they are and can’t possibly drop any lower. Or do I go for the snail venom and potentially try to lower the meds and such that are contributing to “killing” my organs and harming me in that way? It is like they said… what came first… the chicken or the egg. We just don’t know which is more important to do first.
If I went for the snail venom or ketamine, the damage is probably done to my GI system. The organs are dead and most likely won’t come back. But perhaps if I was able to come off the drugs, it would allow me to have the transplant because I wouldn’t “ruin” the new organs. Also, there is a slight (but very unlikely) possibility that the organs are possibly able to come back in a very minute way if I could come off the drugs. It wouldn’t come back in a major way, but it might come back in such a minute way that would allow me to eat a minute amount of food or allow me to gain even a slight amount of weight. All this would help me gain weight and help me fight this disease better. Plus… if I can gain weight… then I would have more options kinda open to me as well because I would be able to get the pump implanted (there would then be room in me), doctors wouldn’t necessarily be so scared to operate on me (I wouldn’t be so unstable and would be able to survive a surgery), and I would probably have more chances to get the transplant. So… anything is possible. In short, even if I can get in just a little bit of food that gets digested – it could be 10x better when it comes to getting on a transplant list. Plus, the pain relief is super important – people in less pain/well controlled pain generally last longer, because their body and mind isn’t nearly as stressed.
So… as you can see everything is a big mess right now. From what I can see… there are 2 big things that have to be done. I definitely foremost need the transplant. That is a MUST!! Without that… I am definitely going to DIE. Then, I also need the snail venom because that would give me the ability to stop or even lower all those horrible narcotics that I am on for my underlying neurological disease that can potentially kill my new organs (or at the very least continue to cause problems and kill my old organs). However, all these treatments cost money and like I said before… that is something that I definitely don’t have and desperately need. So… if you can think of anything at all to help me out or do anything… I would really appreciate it. I know you have done plenty, and I can’t thank you enough for it.. but if you can continue to help me out, I would really appreciate it. It really stinks how my life is so dependent on money. I should have a money tree planted in my backyard. That might be a simple answer to this problem. LOL
But, we will see what will happen. Tomorrow is the transplant team, so we will see what will happen. I am just so glad that I am here. It just stinks that it is located so far away. Too bad they don’t have these doctors in New York. But I guess it is like the surgeon said to me yesterday “That is why they don’t call it ‘Stanford’ for no reason!” I just know that I am running out of time and running out of time FAST. Something needs to be done and done fast or I am not going to definitely see the New Year.
I am so very worried because of the whole financial issue and the pressures on my family. My dad travels back and forth with me to California and tries to do everything that he can, but there is only so much a person can do. He would do anything to get me well, but there is only so much he can do. His hands are literally tied and he knows it. It hurts him so very much that he can’t “cure” me. He would do whatever to get me well. He even told me that he would ‘Freeze’ me and never let me die. He would never be able to handle it if I would die. However, I am so afraid of what all this traveling is going to do to him because he can’t travel, be with me in California, and own a business at the same time. If he isn’t in New York and working, the business is never going to survive. Without him working, there is no business really going out, and therefore, there is no income being made for my family. So… essentially… my whole entire family is suffering because of me. I am so afraid that my family is going to lose the house and everything else because of me. They have done so much for me already and given up so much too… I don’t want them to lose the house as well. It just isn’t fair what I am doing to them.
My dad has been working like a horse when we are home. He works nonstop. He works 7 days a week, holidays, etc. He never takes a moments rest. He is out of the house by 4 AM and doesn’t come home til at least 7 PM. It isn’t like he is sitting behind a desk either. He does physical work and driving all day long and therefore, I am really worried about him and worried that something is going to happen to him, especially since he isn’t a youngster. His 59th birthday is next week and therefore, I don’t honestly know how much longer he can keep up this pace without crashing and such. He is so very tired that he is so ‘jumpy’ and everything. I can’t blame him because anyone at that pace would be totally exhausted. However, I am just so scared that something is going to happen to him because if it did… I would NEVER be able to handle it. I would never be able to deal with it. I would never forgive myself. Yet, he is doing whatever he can to help me and such because he doesn’t want me to die. I can’t thank him enough for it because I don’t’ want to die either. But I don’t want to hurt him either or the rest of my family in that matter. My dad is my very best friend and my “hero!” He is definitely the huge reason why I am here and without him… I definitely wouldn’t be here now.
My dad is so very important to me. We have the best of times together. I better love him, especially after what he did to me last night. My dad snores like crazy at night. It is bad enough that I can’t sleep at night because of the pain and because of my over all illness. I just can’t get comfortable and not being able to sleep with a blanket doesn’t help. The slightest touch will literally send me through the roof. Anyway… my dad snores like crazy and I basically spend the entire night hitting him and beating him up because I can’t take the snoring. It literally drives me up the wall. Well… guess what? He got me good last night. He ended up giving me a good whack last night. He did it in his sleep, as he rolled over and there I was since we are sharing a bed because it is a “king” and such. I didn’t think it really made a mark or anything, but guess what?? When I got up this morning I saw that he definitely gave me a black and blue mark on my face. Luckily, he missed my eye and it wasn’t ‘big.’ But… I still wanted to kill him. My dad’s answer was “you shouldn’t have gotten in my way.” Of course he was kidding though.
My dad keeps saying how he hasn’t really slept here. Meanwhile… he has really slept like a baby. It has been me who hasn’t slept. But he insists that from me waking him up all the time to turn over and such, it isn’t a “sound” sleep and therefore he isn’t technically “sleeping.” I told him that he is getting “sleep!” I wish I got the sleep he got. But I also told him that if he didn’t want me to constantly hit him and wake him to roll over… then he needs to STOP snoring.
Dad has really been wonderful though. He has been taking really great care of me. He even has ironed my clothes. He never irons at home, but he has been ironing here. Never thought he knew how to iron, but apparently he does know how.
Wanna hear something funny? My dad had a difficult time going to the doctor today because we kept getting lost. He kept getting in a “tither” about it too. He kept blaming me and my GPS for not getting there and such. Meanwhile, I told him “it isn’t us… it is him since he is the driver.”
What a way to end my night… just as I was about to finish this letter, the Wi-Fi connection in the building went out. I immediately alerted the front desk and asked if it was just us or if it was the whole entire building. Apparently it was the entire building. So I was the “bearer of bad news.”
To top that off, no sooner did that happen, but the fire alarms in the building went off. Never seen my dad jump so high. At 2:30 AM the fire alarms went off and I freaked out. I asked my dad what to do, especially because we are on the 5th floor and it isn’t like I can get downstairs so easily since the elevator won’t work in a fire. I tried to call the front desk, but of course the lines were all busy. I asked my dad if we should evacuate, but my dad of course was not going to evacuate in his PJs. So… we remained in the room. We watched the fire engines come from the room and everything. I managed to finally get through on the phone to the valet dept. and they said that we could remain in the room. Thank goodness it wasn’t worse and we didn’t have to evacuate. It could have always been worse.
Well… I am going to get going. Have a big day tomorrow. I have had enough excitement for the day, especially now. Please say a prayer that everything will go ok with the transplant team and that I will be able to get it. I desperately need this in order to save my life. I am literally watching my life disappear. Like I always say… if you can please do anything or have any suggestions to raise some funds, please let me know because my life depends on it. Thanks again for all your help. You can’t imagine how much I appreciate it. Looking forward to a better tomorrow… hopefully!!