Well… here I am at the Cleveland Clinic and I have news to share. In fact, I am so glad and fortunate that we came here because this hospital and doctor are so amazing. I really think that after crisscrossing the country and being poked and prodded like a guinea pig, I finally landed in a hospital and doctor that is going to save my life! I really think this doctor is not only knowledgeable in his field, but he is not going to be like so many other doctors that have promised me so many things and then got scared and backed out. I just hope that I get the treatment that I need in enough time because I am really running out of time!
Well… we finally made it to Cleveland. This place is huge and there is other stuff to do on campus other than just go for medical treatment at the hospital. So yesterday we went to the Museum of Natural History to kill some time. Well… it definitely wasn’t like the one in New York. In fact, it was so small and childish that we really did wonder why we went there. The biggest attraction that we saw was some live animals, which included a deer, some owls, and a turkey. But, at least it did kill the time.
The campus of the Cleveland Clinic is amazing. We keep seeing transplant helicopters, which makes me hopeful that I will get better here.
What a day I had today though. My head is still spinning after all that has happened. I found out so much news… news that I never knew. I mean… I knew that I was sick, but I never understood how sick. I also never quite understood what was happening to me when I was feeling “tired” all the time or when my brain was feeling “foggy” at times either. I always blamed it on lack of sleep or my medications, but apparently it goes far beyond that.
The team in Cleveland Clinic is simply amazing. The doctor came into the room and the first thing he did was give me a hug. He sat right next to me on the table and gave me the nicest hug you can imagine. Never before did a doctor do that to me before. It really made me feel good and it made me feel like there was a doctor who cared.
The doctor then asked me a few questions, as if he knew how “good” he was and how he wanted to show me how I am in such great hands. He asked me “Do you know who I am?” Of course I knew who he was. I only researched him thoroughly and knew everything about him from his picture to his curriculum vitae. He then asked me, “How did you find me?” He also finally told me that I am in “good” hands and he is not going to give up on me.
I never met such a caring and knowledgeable doctor. It turns out that I need surgery as soon as possible because I am so very sick. However, this doctor isn’t going to stall us out or chicken out like the others. He said this has to be done now.
I also learned why I am sleeping more than ever and why my brain is so foggy and such. It turns out that since my GI track is gone… especially my colon, all the toxins are building up and pouring into my bloodstream. Therefore, I am becoming totally intoxicated and poisoned. It is poisoning all my organs including my brain. This is leading to cirrhosis of the liver and it is also poisoning my brain. If something isn’t done fast, it will continue to intoxicate my body and I will end up in a coma and die.
At least now I know what is happening. I knew something wasn’t right. Some of the doctors kept saying that it was my medications that were making me so “sleepy” and “cloudy.” But I knew that couldn’t have been the answer because I have been on these meds for a very long time and if so, why all of a sudden is all this occurring? I knew that it had to be something else. It is getting harder and harder to stay awake and as I am continuing to be intoxicated by the toxins, it is only going to get worse. That is why it is imperative and urgent to get this taken care of right away because if it isn’t, I will end up going into a coma and dying. My whole entire body is being poisoned.
So the question is whether I should have a transplant or just remove my colon. The doctor said to my dad, “If she was my daughter, I would transplant her immediately.” However, he didn’t want to do that because he said he didn’t know the “enemy,” which is the neurological disease known as the RSD. He isn’t too familiar about it and since I am documented as the worst case that exists with it, he didn’t want to do a major transplant until he knew all that he could about the RSD and how it would react to the transplant. So he is doing all the research that he can and also sending out all these other doctors and staff to do research on my illness as well. He is even calling out doctors from retirement to see if they can help. The doctors said that Dr. Kareem, which is my head doctor, is like a terrier. Once he sinks his teeth into something, he don’t let go until he finds out all he needs to know about something. That really made me feel good when I heard that because I knew that he wouldn’t give up on me.
In the meantime, something has to be done because my whole entire body is becoming intoxicated and I am going to die. Therefore, he is going to take out my colon as soon as possible. I told him that I really didn’t want a “bag” and he said that he is not a “bag guy!” I didn’t quite get the joke, but my dad did and they laughed at my expense. But then when I caught on, I figured it out.
The doctor told me that he isn’t looking to giving me a “bag” when I go for the surgery. However, nothing is a guarantee. But he did say that he is 99% sure that I won’t need a bag and if it should happen, then it would only be temporary. That made me feel so much better because I definitely didn’t want one. At least I also know that if it did come down to it and I had no other choice, at least it will only be temporary.
So the plan is all set for me to have my colon taken out in the meantime. However, there are some tests that need to be performed before they can do the surgery. Therefore, I will be coming back a few days before surgery so that I can have these tests done and then I will go right into the surgery. I need tests such as a heart stress test and others.
The surgery has to be done as soon as possible because of how bad I am doing and how quickly the toxins are spreading and I am deteriorating. The surgery will be about 10 hours long. He said that I would have to stay here at least 2 weeks. I don’t know how we are going to manage paying for all this especially when dad won’t be able to work during this time. So… if you can please help me raise some funds… It would be much appreciated.
I also met with the TPN doctor named Dr. Steiger. He is supposed to be the “founding father of TPN.” He is also going to be working on the team to see if he can try to get some TPN into me so that I can gain some weight and it will help me heal and everything. I have had TPN before, but unfortunately, I failed it all those times.
So… that appears all that is happening. My head is so overwhelmed with what is happening. I can’t believe that I am being poisoned. I can’t believe that there are toxins being built up and that it is going to my organs and even my brain. At least there is not an answer why I am so sleepy all the time and why I am having trouble thinking and concentrating.
I really feel like this is the place that is going to get me better. The Cleveland Clinic is such an amazing place to be. We kept seeing the transplant hospitals come to the hospital and I really felt hopeful that one day that helicopter will have my transplant organs on them. Since 2003, Cleveland Clinic has been ranked #2 in Digestive Diseases. The doctor that I am seeing, Dr. Kareem, is absolutely the best, as he has done the most GI transplants than any other doctor in the world. So fingers are crossed that this is the beginning of my journey of getting well. This is the beginning to my MIRACLE!!
My dad is really too funny! It just so happened that there were workers on top of the main hospital at the Cleveland Clinic working and my dad wanted to see exactly what they were doing. The building was extremely high and my dad was being inquisitive and nosy. We were in the doctor’s pavilion, which was located directly across from the main hospital, but there was quite a distance of more than the length of a football field between the two. Therefore, he took my camera and zoomed in on them to see what they were doing. He is really too funny.
I felt just like a little kid again with my dad pushing me in the wheelchair. After going to the doctor, I wanted to go to the Gift Shop to see if I could get a sweatshirt that said Cleveland Clinic. However, I was too weak and tired to walk and therefore, I really needed a wheelchair in order to make it there. I felt just like a little kid with my dad pushing me because when I was little, my dad used to push me in a wheelchair every time we went to visit my great-grandma. We used to run up and down the corridors with him pushing me in the wheelchair and I loved it. I almost wanted him to do it again in the hospital to bring back old times.
So… we are on our way home tomorrow to get things organized for our return trip here. We don’t want to waste money here while things get organized for the big surgery. We figured that we would go home and when things get set up and situated, we would then return back. This way everything would be in place and we would only have to spend when needed. The doctors are hoping to have us bad by the end of the month because of how badly I am doing, but of course it is contingent on the hospital schedule, which is always so busy because this is like the top hospital in the country, as well as on the funds that we have because if we don’t have money… then there is no way that we can come back and have this surgery of course.
We were really worried about the water when we came here because Ohio was in a state of emergency and was told not to drink the water. However, we found out that it was safe to drink the water here because where the hospital is located, the water is running too fast to actually carry the toxins that is poisoning the water that the other parts of Ohio cannot drink.
Well… I guess that is it. I guess I shared all the info that happened. I guess I just have to start preparing for the huge operation. Please continue to pray for me! Please continue to spread the word that funds are desperately needed because without them, I don’t know how we are going to afford this operation. Thanks so much for all your support!