Finally A Treatment

 I haven't posted in awhile, since things have been a little crazy. Some of it has been a good crazy, because I am finally on a treatment, the first time since October or November. The treatment is called Rituxan. Its an infusion that I receive every week for a month, that is about 4 to 6 hours. The medicine suppresses the B cells, or lymphocytes that are a key component of the immune system that are produced by the bone marrow. The Rituxan will suppress them for 9 to 12 months. The goal is to suppress my immune system so that it will slow down my disease process. It will be up to 6 months before I will notice if the treatment is working. The first infusion went well, except for a minor reaction where my throat started becoming soar and feeling tight. The nurses quickly administered Benadryl and Solumedrol, and the reaction was under control. The nice thing about this treatment is that it does not cause nausea, vomiting, and hair loss like chemotherapy does.

     After not being on any treatment for several months, it is nice that I have finally been started on a treatment. It is still very frustrating because I am still having an increase of symptoms; joint swelling stiffness, heliotrope rash, muscle weakness and fatigue. It is extremely frustrating that I have had one treatment and have not noticed a different. Even though logically I know that I wouldn't, I still wanted to notice a difference. It is really hard that I am having an increase and symptoms and feeling cruddy. I am continuing to work on my Earth Science class, and that is something that has helped me to be able to continue to do something that is intellectually stimulating and to have a routine.

      I still do not have a rheumatologist, so our next step is to appeal to the Children's Hospital to allow me to stay with Dr. C since no other rheumatologist will take me. Not having a rheumatology visit scheduled my whole family feels as though we are in limbo, and as though I am in limbo. I am continuing to pray and trust that God is with me and my family during this difficult time, and He will take care of everything. That helps me to have peace of heart, mind, and soul, and that provides great comfort.

 

 

Joyful Love

         &

Blessings In The Lord

Alexandra K. Acosta

Stress Stress Stress

Sorry I haven't written in awhile, but my family has been under a lot of stress since before Christmas. My grandmother had her second shoulder replacement on December 17th, and ended up developing lymphedema. To deal with that, she had to go to a lymphedema clinic everyday to get wrapping done, and have a machine at home that she needed to use two hours a day. They said the problem would be lifelong. In addition, over the winter break, my grandfathers knee had been bothering him more and more (a problem he has had for years). We have been trying to go to the orthopedist for years, but he has a high pain tolerance, and generally ignores it, but it finally got to a point where he couldn't ignore it and went to our family orthopedist. The doctor took one look at the x-ray, and it was just bone on bone, no cartilage, tissue or anything. All the sudden he was scheduled for surgery on my birthday. He was hoping to put it off until the summer, but couldn't. I had my carpal tunnel surgery a week or two before his surgery, and mine went well. The Friday before my birthday on the 28th, my grandmother went to a post surgery follow up with the surgeon, and we found out the joint came out of socket, a very rare complication, that the doctor felt could have possibly been due to the lymphedema treatments. That day he put her to sleep, and tried to adjust it back into place, but couldn't. So the following Monday, two days before my grandfather's knee replacement, my grandmother had surgery to put the socket back into the joint. We thought she was going to be there only one night maybe two, but she ended up being there four nights. My grandfather wanted to postpone his surgery, but we convinced him not to. The biggest concern for him was not being able to drive for three weeks, since he is the "captain of this ship." So he had his surgery on Wednesday, and both he and my grandmother were on the same floor of Seton Hospital at the same time, and since I can't stay the night by myself, I stayed with my great Aunt Martha. As if this wasn't enough stress.

      Dr. C has been trying to transition me to an adult rheumatologist since I was 18, but no one will see me and wants me to stay with him, but he is a pediatric doctor. I had an appointment set for Monday, February 2nd, with an adult rheumatologist in San Antonio, and I had my last appointment with Dr. C the Tuesday before my birthday. We weren't sure if she was going to see me, but my records had been sent and apparently he was going to talk with her. On my birthday, I get a call from San Antonio saying that they got a referral for me to see one of their rheumatologists. I had told them that I already had an appointment to see this particular doctor on February 2nd, and Dr. C's office also said the doctors office had my appointment for that day. The lady on the phone said she didn't know where I got that appointment from because she only sees patients in clinic on Wednesdays, and that I was supposed to be scheduled with a resident, but she may only come into say hi, and they scheduled me for Wednesday, February 4th with a resident. This did not make me feel comfortable, and I was already nervous, and to top it off my mom called Dr. C's office and the nurse said that Dr. C had talked with the doctor I was supposed to see, the day before, and after he had talked to her they are now passing me off on a resident. My family did not feel confident after this either.

      On Tuesday the 3rd, my mom and I drove down to San Antonio, checked into the La Quinta by the medical center, and met her good friend Susan for dinner at our favorite restaurant in San Antonio, Alamo Café. Even though I cant eat I had some sopapillas and ice cream. The next morning, we got up early since my appointment was at 8:30 AM. Since the doctor was part of the UT Health Sciences Center and the first address we had was at the medical center, we decided to stay at the La Quinta near the medical center. My grandfather found another address they gave me and it was all the way downtown at the Robert B. Green campus, and with traffic, it was a good we left when we did. When were called back and were with the nurse in the exam room, she said that they had no medical records on me at all. We couldn't believe it, because we knew for a fact Dr. C's office had sent them over a month ago. She says it could have been at the other doctors office, but it was still shocking. She said that the resident who was seeing me, was feeling sick, and may come in wearing a mask. We couldn't believe a doctor who sees immune compromised patients would come to work sick. The resident came in and said, "why are you here", he knew absolutely nothing about me and had no records about me. My mom and I were stunned and couldn't believe it. After talking for a few minutes and asking a couple of questions, he said he needed to go talk to his attending. A few minutes later, the partner of the doctor we were going to see came in. He said again that he didn't have any records on me, asked a couple of questions and said, "I don't think there is anything more that we could do." My mom asked if he was going to talk to Dr. C so that he could understand more about my case, and he said, "that it wasn't necessary, because they were coming in years in after things started." Well of course were years in, that's what transitioning from a pediatric doctor. They wanted to do blood work, but nobody there in that big medical center could access my port. It was all ridiculous and a big waste of our time, and I was treated unprofessionally.

      I now don't have a rheumatologist and no solid treatment plan.  I have been turned down by all rheumatologists in Austin, San Antonio, Dallas, and Houston. The plan to transition me has failed. As you can imagine, my family and I have been under immense stress lately. We are trying to just take it one day at a time, and trust in the Lord. I know that God is with me and my family, and that He will take care of us. We trust need to trust and surrender it all to Him. By doing that we will be at peace, and know that it is all in His hands.

 

 

Joyful Love

         &

Blessings In The Lord

Alexandra K. Acosta