Appointment At Texas Children's

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

Insurance Insanity

I know that insurance companies are important and necessary in regards to healthcare in our society. Although I am very grateful that I have insurance I am currently very aggravated with them. As you know I am in the process of trying to meet with doctors at Texas Children's Hospital in Houston about the possibility of a Bone Marrow Transplant (BMT). The doctors have agreed that I can go down there for a consultation but we are now waiting to hear from the insurance company. According to the financial counselor at the hospital, the insurance company does not have a problem with me going to meet with the doctors for a consultation, but they are waiting to hear whether or not insurance will pay for the actual transplant. They don't want me coming for a consult unless they know insurance will pay for a transplant. What could be a snag with insurance is that they have to decide whether or not a transplant could be used to treat my diseases, with my particular diagnosis. As you may know my conditions are not really treated with a BMT because the medications they have to treat them are so effective, that transplants are so rare to treat them. According to the insurance company my case is still in review. Its so upsetting that a group of people who have never even met me, are not my physicians, and are just reading a few things about me, are the ones who get to choose whether or not I can receive a transplant. It just makes me so mad that I want to scream. I know life isn't fair but his is just truly unfair. But meanwhile I am sitting hear with immense fatigue, a lot of pain and weakness, and using supplemental oxygen. I am just waiting and waiting, it feels as though nothing is happening, even though it is. In the meantime, I am praying every day that insurance says yes to a BMT, and that I can get an appointment in Houston. My faith in God is the main thing that is keeping me going. Patience is something that I am running low on, but I know that with prayer and a positive attitude I can get through this. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Object Of Attention

Yesterday I went to see my primary care physician Dr. Meyerson, because I have been having some difficulty breathing despite using my inhalers and other medications. The doctor ended up prescribing supplemental oxygen during the day, for when I am walking from like the house to the car or into a restaurant and pretty much when I'm out and about. As you can imagine I wasn't happy and was pretty surprised, although my mom and grandmother were not. This was just another sign of what the disease was doing to my body.  I was/am angry and upset. One of the reasons that I am so upset is because of all the looks that I get when I go out in public. I'm bald, use a walker/wheelchair, and am now on oxygen. I feel as though I have the word sympathy stamped on my forehead. Being a 19 year old female, appearances are everything. I try to ignore it and "get over it", but I just can't. I know that there is nothing I can do about the way people will react, but I can control how I respond. I need to keep my head held I, and know that my illness does not define me. I know that I am strong, and that my faith in God will help me get through this, and make me even stronger. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Getting Away

A week ago yesterday we left to spent three nights in Port Aransas. My grandfather had a conference in Corpus Christi, so while he and my grandmother were there for the conference, my mother in I were relaxing in Port Aransas. Unfortunately, I was not able to actually go to the beach because we couldn't get my wheelchair there. But I was able to see it up close outside of my grandparents hotel in Corpus. Feeling the breeze, smelling the salty air was so peaceful and relaxing. The hotel we were at in Port Aransas has a wonderful pool, and I enjoyed relaxing in the sun by the pool drinking a virgin Pina Colada. And the seafood was delicious. I had shrimp everyday, sometimes even twice a day. Just a few days before we left, I had gotten the news about meeting with the BMT doctor in Houston, so the trip came at a perfect time. It was a place where we could get away from all the stress, and not worry about doctors appointments and treatments. When your sick and have a difficult time getting around, going on trips that aren't for medical purposes are a big treat. We all need a break every once in a while, whether we are sick or not. I enjoy getting time away to relax and just be "free". I thank GOd for the beautiful things that he he has created for our enjoyment. I know that life is meant to be enjoyed and we should enjoy it to the fullest. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta