Sorry it took me this long to write, but I haven’t been feeling well at all. In fact, I am very ill as I am writing this, but I promised that I would write and therefore, I wanted to keep my word and let you know all that has happened during my trip to HOPKINS. I just don’t know how long this letter will be. If I should forget anything, I will put it in the next time I write.
I have been so very sick during this entire trip. I have been sick from the moment we have left the house to even now as I am writing this. Thank goodness I have my dad because he is trying to take such good care of me. I am so lucky to have him. Even though we are making the big drive home in a few hours and my dad should really be resting and getting all the sleep that he can because not only that, but it is also very late at night and it is the time that people should be sleeping, But instead of sleeping and getting his “rest,” he has remained awake to make sure that I am ok and going to make it through the night.
I just have the BEST dad in the whole entire world. There isn’t anything that he won’t do for me. In fact, since I have been so weak, my dad has been picking me up off the bed and carrying me to the bathroom Everytime I need to use it since I can barely walk. My dad makes sure that I have taken all my meds and have eaten. He also tries to make me smile even when there doesn’t seem to be anything to smile about. He also always tries to keep my “hopes” alive and always tries to keep me going even when I don’t see that there is a light at the end of the tunnel.
I only hope that I get better not only for me, but for him as well. I pray for the day that I become a doctor because not only do I want to be a doctor so that I can help others and make a huge difference in the world, but I know that would make my dad so proud. It is a dream that I have for myself and a dream that my dad has for me. I only hope that I get to become it and my dad gets to see it because it will make us both the happiest in the world.
I want to get better so badly because I want my life back. I was robbed of so much and made a prisoner to this horrendous disease. However, not only has it affected me, but also it affected my family as well especially my dad. It really took affect on him because not only has it cost him emotionally, financially, physically, etc. He has lost so much because of this illness and it isn’t fair to him. He works harder than ever because of this illness because of how expensive the treatments are and how he has to take me to treatments as well. I also see the stress and the emotional toll this illness has taken on him. He watches me suffer and he wants to help so badly. He keeps saying that he would “take away this disease if he could.” I definitely know he would. He even told me that he would take it for “himself” if he could, but I told him that he would give it back in a second and wouldn’t last if he even did that. I don’t wish this disease on my worst enemy because it is so horrible. I see the despair in his eyes because as much as he wants to help, his hands are tied. Not only can’t he wave a magic wand and make me well, but also he can’t even afford the treatment anymore necessary to get me well. It really kills him to watch me suffer like this and know that he can’t really help. I know that if he could do anything… he would.
My dad and I have such a special bond and I know that if anything would happen to me, my dad would never make it through it and recover. My dad even threatens me and tells me how he would never be able to exist without me. Since I am the one who is the “nurse” in the family, he even states that he wouldn’t watch his weight or take his medication because there would be no one to make him do it and watch him with it. He says this because he does anything to make me “keep going,” but he thinks that I am in control and by saying this that I will be able to last and continue on. He would be at a complete lost if something happens. But as much as he wouldn’t be able to live without me, I would never be able to live without him and it really scares me that something will happen to him because he works so hard and is under so much stress.
Anyway… getting back to all that has happened on this trip. What a disaster this entire trip has been. We are so lucky in a way that we ended up driving to HOPKINS. We would never have gotten out the airport with the way the weather has been. Flights are being cancelled like crazy because of the weather, as it is cold, snowy, and rainy. You never know what to expect anymore with this weather because it is even freezing cold and having ice storms in Florida (something you would never see or expect). The airlines still even haven’t really caught up from the delays and cancellations from the snowstorm that we had last week. In fact, the day that we were supposed to leave for HOPKINS, they ended up having to actually shut down the airport because of the way the weather was. So we wouldn’t have gotten out anyway.
So we drove down to HOPKINS. Yet, a normal 4-hour drive took us like 7 hours to get here. I can’t tell you how many times we almost turned around to come home because I was not feeling well at all. My autonomic dysfunction was really flaring up and I was really suffering. I definitely can’t sit in a car for this length of time. In fact, I am dreading driving home because I don’t know how I am going to do this. Despite all the extra medications that I took and how early we left so that I would hopefully “sleep” in the car, I was really suffering and in excruciating pain. I definitely learned that there is no way that we are going to be able to really take a car on trips like this. We really have no choice but to “fly!”
But we continued to HOPKINS despite how bad I was feeling because we knew we had to come. My body was so bad though when we arrived from the trip that I was so extremely sick the entire day. To make matters worse, we ended up driving to HOPKINS the same day as the first appointment with the doctors because we wanted to save as much money as possible since we don’t have any extra funds available. We don’t even have the funds to pay for this trip and don’t know how we are going to pay for it. So instead of coming the day prior to my appointments like we usually do so that I can “rest” and how the doctors usually prefer, we ended up coming the same day so that we could avoid one night of paying for the hotel because every little cut helps.
I had the first appointment with the doctor and things didn’t go very well. The doctor didn’t like what he was seeing, but unfortunately he didn’t do very much. I saw my regular GI doctor here at HOPKINS, and she also had me see another doctor who was supposed to be very knowledgeable in my illness. However, I really felt it was a waste of time to see this other doctor because he really didn’t do anything. Instead, he wants us to come back in about 2 weeks for lots of tests because he wants to see how bad things have gotten since he sees a huge difference in me from the last time I had these tests. So he wants me to come back for another weeklong stay, which I will undergo so many tests, which include a 4 day gastric emptying study, esophageal manometry, pH study, anorectal manometry, Breath study, etc.
The doctor that we saw said that I am doing extremely horrible and something of course needs to be done or I am going to die. But he told me that there really aren’t any good options. He said I need TPN desperately through a central line, but he said that is a very bad way to go because it will give me lots of life-threatening infections and I can easily die from it. He also said I can go the route of get a J-tube, but my body is very accepting of it because of the neurological disease and autonomic dysfunction. So there just isn’t an easy answer.
The doctor also told me that one of the medications that I am taking is actually contributing to killing my heart. I didn’t know that this was occurring, so in a way it was good that we saw this new doctor in that aspect. At least I know this new fact. The doctor told me that it causes heart failure and that is why it has not been approved in the United States. So now I have to worry about that causing my heart to fail in addition to my heart failing because of my illness in general. My heart is already suffering like crazy because my bloods are falling, I am malnourished, I can’t absorb, I have lots of pressure being put onto because there is so much ‘air’ on it from the gastroparesis, etc. So… to have the added problems of the medication causing me heart failure on top of all the other chances, it is not good.
I really have no choice though but to stay on this medication. So I don’t know what to do. I get this medication out-of-the-country, but it seems like all the medications that are somewhat helpful for my stomach have been shown to cause problems. In the past, all the medications that I have had been on such as Zelnorm and others have been taken off the market because of heart issues, so I am not quite surprised that this medication that I am taking also causes it. You know? But I really have no choice but to stay on this medication despite the fact that it is “killing” my heart and causing it to fail as well. It can easily cause an arrhythmia, but I cannot stop it. I did at one time try to lower the dosage and try to come off of it because it is also a drug that feeds my pituitary brain tumor, but unfortunately I couldn’t even do that. When I tried to lower the dose, I became even more incapacitated with pain and I couldn’t manage. Things were so much worse without the drug and I couldn’t even live without it. So there is honestly no way I can stop it. So… I guess that only leaves that there really needs something to be done… a cure for my stomach and GI problems before it is to late because not only are my GI problems extremely life-threatening because not only do I weigh only in the 60s, I can’t absorb, I am malnourished, it is affecting my organs, it is causing me to aspirate, etc. but the meds are affecting my heart and killing it as well.
My GI doc is now also telling me that I need to go someplace else that can help me before it is too late. As a result, it appears that I am being sent to Cleveland Clinic. They made an appointment for me in about 2 weeks there, but when I spoke to the Cleveland Clinic, they said that they might want me to see a different doctor. So I will know more information about this tomorrow. Never a dull moment.
They are also sending me to CLEVELAND CLINIC because not only is it hoped that they will be able to do something, but that is the hospital where the transplant can occur. HOPKINS doesn’t have the transplant, as very few hospitals in the country are able to do it. So since Cleveland has this option and since there is supposed to be very knowledgeable doctors in my disease there…we are headed there. I am also heading there because I desperately need surgery because I have the blockage/twist in my colon and I cannot go to the bathroom at all basically. I also am ‘fermenting’ or ‘rotting’ inside with the drugs and whatever limited else I am taking in and therefore I can easily go into Sepsis and die. However, I really need to be in the best of hands for this surgery to occur, and it is thought that the doctors in Cleveland might be better able to handle me. I just hate being a little ‘hot potato’ being bounced around. But unfortunately I am in such bad shape and have a very rare condition that I need to go to a place that can handle me and see specialists that are knowledgeable in not just one part of my illness but in my overall disease as well. It just stinks that I am going to have to go on another trip because I don’t know honestly if my body can last that long, if I can make another trip, or even how we are going to afford it. But I guess we really don’t have any other choice. All we can do is hope that I make it until then and hope that I receive funds.
So this trip really wasn’t as helpful as I thought it might have been. I really wished I would have gotten better news while I was here, but unfortunately I didn’t. All I was told was three things. I was told about the medication that I was on that it causes heart failure and arrhythmia, that I need to have all my testing repeated because of how bad things have gotten, and that something has to be desperately done because I am rapidly deteriorating (which is something that I already knew) and that is why I am being sent and will be heading to Cleveland Clinic
What a trip though this has been. Not only did we have to deal with all this stuff, but also we had to also deal with stuff from home because of the stupid weather. My mom stayed behind like always because she had to watch the house/business and we really couldn’t afford for all three of us to go. However, we are kinda lucky that she did even though I would have loved for her to be with me because the weather has been so very cold and it has caused so many problems at home. For one thing, the smoke alarms in the house keep going off out of nowhere. In fact, my mom was literally coming down the block because she was coming home from work and she could hear the fire alarms going off in the house. Of course she was freaking out because she didn’t know at that point it was a ‘false alarm.’ My mom isn’t a person that can take surprises and she didn’t handle that very well. Then she went to the thermostat and for some strange reason it was reading really cold in the house. My dad and I are still trying to figure out how it dropped so low because the thermostat is set at certain temperatures and it never is supposed to drop that low. So we were scared that the heat broke or something, which would definitely be a disaster because it is only like in the single digits. Finally, we got a phone call that you can’t flush the toilet. It appears that the water doesn’t come out. My dad is thinking that the pipes froze in the wall. So my mom picked the heat up and hopefully it will not only warm the house up, but also it will also make the pipes unfreeze. I really hope that the pipes unfreeze by the time I get home because how am I going to use the bathroom if it doesn’t? What a disaster!
So… that takes care of everything. I am getting ready to leave in about an hour or so to head back home. We want to get on the road early because we want to beat rush hour. The less time in the car… the better for me because I am going to have a hard enough time in the car as it is. I just hope that I make it home without too much pain. Thank goodness we are kinda leaving now because I am out of clothes. I did pack a lot, but since I have been so sick, I ended up going through it between all the vomiting and blood coming out.
I am still working on Mexico as well as trying to get funds in general for my medical treatment. I again tried contacting all the news stations such as ABC news, CBS news, DATELINE, TODAY SHOW, GOOD MORNING AMERICA, EARLY SHOW, etc. If you have any ideas or can possibly help, please let me know. I am in desperate need of help because I desperately need treatment and I can’t get it without these funds. We have made so many cuts (even cuts in my treatment that are hurting me too), but we still can’t afford it. The bills are so great, as we can’t pay the mortgage and barely can put food on the table. It is like things are just snowballing out of control and I am not going to lie that I am not scared. I know that I am having a hard enough time getting the treatment in the United States… there is no way I am going to be able to afford the treatment in Mexico that can save my life because just Mexico alone will cost me over $50,000. All I know is that I am deteriorating and I desperately need help.
The fact is that I need help and I am really getting tired. I am tired of suffering. I am tired of being in physical and emotional pain. I am just plainly tired of this whole thing and watching my life being taken away from me as everyone else moves on. I’ll be honest with you, I am trying my best to hold on and keep my spirits alive, but it is definitely not easy. I am tired of being hopeful to only have the carpet pulled out from underneath me. I am tired and really disgusted of there possibly being out there and it being like a ‘tease’ because I know it can possibly help me and regain my life back for me, but I can’t get it because it comes down to that green paper. Unfortunately I don’t have the money to get the necessary treatment I need and no matter what I do… It feels I will never be able to raise the money I so desperately need. I am also tired of hearing bad news. It is at the point where I say, “I don’t get any ‘bad’ news… I just don’t get any ‘good’ news.” I really need something good to happen already. I have been suffering too long. How much longer can I do this? I would do anything for my life back!
So that is why I am still going and keeping my fingers crossed that someday I will get to the other side of the rainbow and be done with all this. I can dream, right? One day I will be a great doctor and when a patient comes to me and says, “Doctor, I am in pain and words cannot express how bad it is,” I will be able to say, “I know how you feel, I’ve been there too. So, take a seat and let me tell you a story.” I just know that I need help in raising awareness and funds so that this can all occur, so I am hoping that you will be able to help. Time is of the essence, so I am in desperate and in urgent need of your help.
Well… I am going to get going. When I know more info, I will definitely write!