This past Monday I had an appointment with the BMT doctor at Texas Children's Hospital in Houston. I was very nervous going into the appointment, but after meeting the doctor they subsided. Dr. Martinez, was absolutely wonderful. Her plan is to do an Autologous Stem Cell/Bone Marrow Transplant (where they use my own stem cells or bone marrow). She agreed that this was pretty much are only option left. Before we can start there are protocols that need to be followed. She needs to have a meeting with her colleagues to make sure they are all in agreement and develop a more specific plan (since transplants aren't usually done for people with my condition. She thinks they will agree with her on me having the transplant. Part of the protocol includes me having to see how well my heart, lungs, and kidneys are functioning to decide whether or not to use radiation. I also have to see one of the rheumatologist's there. When I heard that I got an odd feeling in my stomach. I started having flashbacks from several years ago when I saw one of their rheumatologist's, Dr. De Guzman. She told me that my problems were all in my head and that I basically needed to see a psychiatrist. Later on I found out that she had said these things to some other kids in my chronic illness support group. When I told Dr. Carrasco and Dr. Patel about her, they new who I was talking about, they were being professional and didn't say anything negative about her, but you could tell that they weren't very fond of her. Dr. Martinez had never even heard of her, and Dr. De Guzman is one of the chiefs of pediatric rheumatology there. She says there are two other rheumatologists she likes working with.
One of the main reasons I was nervous about seeing the rheum doctor, other than them thinking that I was crazy/it was all in my head, is I didn't want them to tell me go and try this treatment and other things like that, and I didn't want them to disagree with Dr. Carrasco's diagnosis. Dr. Martinez says that the rheumatologists will not be deciding if I get the transplant, and that made me feel better. And of course insurance needs to approve it. There is an article that has statistics for stem cell transplants in patients with autoimmune diseases, and she will be writing a letter for why she feels the transplant is necessary. My grandfather, mother, and I got the feeling that she will do everything she can to get me the transplant. In the meantime God and the Bible is whats keeping me going. I pray every day, and try to read the Bible every day. I am particularly reading versus that help me with being worried, discouraged, and anxious. I know that God is with me and watching over me. Its difficult to feel so miserable day after day, so tired and in pain. On a good note though, the pulmonologist said that I have no lung disease, and my heart looks good, so the disease is not affecting my lungs, and that I don't need the oxygen at night, but if I feel I need it for exertion I can use it.
You know, it seems as though almost every day I feel like just staying in bed and sleeping because I just feel horrible. But I keep on getting up every weekday at 7:00 AM (8 o'clock on the weekends), and I get dressed and everything. I thing God is what is giving me the strength to do it. I know that I have to have a routine, People ask me why do you go out if you feel miserable? Why don't you just stay in your pajamas and sleep? I am not going to feel any better at home or sleeping all day. To most people my days seem non productive. Its extremely hard to study, but I do the best I can. I try to take each day one at a time knowing that I have the support of my loving family, wonderful friends, and of course God. I thank everyone who has taken care of me, visited me in the hospital, and is just here for me when I need to talk to someone. I am so blessed, and thankful for my life, because even though I am very sick, I have more than most.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
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