Hey family,
I know it's been a while(that's an understatement) since my last post. Well to be exact, it's almost been a year. A lot has happened since. First, I would like to say I turned 37 on this past Memorial Day. I spent my day at home with my family. My parents grilled out the day before, so we ended up eating leftovers instead of battling the masses out celebrating the holiday with their families. I swear, hear in Huntsville, everyone's favorite pastime is going out to eat. There are a lot of new restaurants to choose from in the area, so who could really blame them. I must say my favorite restaurant is still Rosie's. I will be trying the Texas Brazilian Steakhouse, so I will do a little review and let you know how it was.
As far as my health goes, my lupus is still active according to my labs taken by both of my rheumatologists. I tried a new infusion drug called Rituxan back in March. The first treatment went well, the second not so well. I was half way through the infusion when the RN turned up the rate of infusion and I had a severe allergic reaction. My hands turned a blotchy red, began to itch, and my throat began to swell up. I knew I was in trouble when my voice became hoarse. The RN immediately gave me an antihistamine shot along with some Benadryl. Seeing that these two remedies weren't working fast enough, I was given more antihistamine while the nurses called my doctor. He was in another building, but would be coming to the infusion floor quickly. While we waited I continued to get worse, prompting the nurse to call UAB's rapid response team. They arrived within minutes and we were headed to the ER department. Wow, what a day. In May, I returned to UAB to see my doctor, where he ordered labs to be drawn to see if the Rituxan helped control my lupus. The summer went by, with no further incidences or trips to the hospital. I continued to do nocturnal in-center hemodialysis on Sunday, Tuesady, and Thursday nights for 8 hours and now it is reduced down to 7 hours. I really wish I could go back to doing home dialysis, it allows you more control over your own treatments and the increased ability to travel whenever you want. Later in the year (I believe it was October)I went back to Vanderbilt's Kidney transplant center for my re-evaluation to be continued on their kidney transplant list. Everything went well, and I am still listed as "active", meaning if and when a kidney comes in that's matched for me I will receive it. Yay!! In November, the day before Thanksgiving, I ended up having an unexpected surgery, but was released from the hospital Thanksgiving Day. The holidays came and went, as most of the time I was at dialysis center receiving treatment. I was happy that the clinic manager did rearrange our schedule so that we could spend the holidays with family.
In January, I reported to UAB's Kidney transplant center for my re-evaluation. After speaking with their doctors and staff, I was placed on the "in-active" wait list; meaning I still accumulate time but if a kidney comes in I wouldn't be called because of my lupus activity. I felt as though this was somewhat of a setback; but there's always Vanderbilt. Speaking of Vanderbilt, I received a call from them in January for a kidney. That call, however didn't work out. Then in February, I received 2 calls , one was one a Tuesday morning. The coordinator stated that I was the back up person for that kidney, and if it didn't go to the other patient then I would get it. Unfortunately, the kidney went to the other patient. Just when I started to get down about things, my coordinator called the next evening around 7pm and asked me if I was still packed. I told her yes, and she said they had a kidney for me. She sounded vey excited, stating that this was a perfect kidney for me and that it had not been on ice long and was from a younger person. We drove to Nashville as fast as we could. When we arrived I was taken up to the transplant floor where they began triaging me. The nurse attempted to start an IV and take blood but was unable to get any, so she said she would return. The resident came in and began to explain to us how things would go. She had been talking no longer than 5 minutes, when her pager went off, she ignored it. Then her cell phone rang and she excused herself to answer it. She came back into the room and stated that the kidney didn't match, and that the surgery couldn't be done. I along with my parents were in total disbelief. I began to question her as to how it was determined especially after we had been told it was a match. She stated that the crossmatch(they run your blood against the donor's blood for antibodies that would cause rejection) was positive. If they had done the surgery, my body would immediately reject the new kidney. I told her no crossmatch had been done, because they couldn't get any blood. She argued that the RN was able to get a small enough amount to run the test. In my mind, I thought there was not enough time between the RN leaving the room and the resident entering, to run the test. For future reference, it takes at least 4 hours to complete a cross matching test. So I left Nashville without a new kidney. Let's just say I was devastated. The idea of not having to be stuck in the arm with 2 big needles, three times a week had been ruined. We came to find out later that the kidney they had called me in for wasn't even my blood type.
Needless to say, I'm still on my dialysis journey three times a week. It is a long and at times depressing journey. Especially when you see everyone else's life continuing, when you feel like yours is on hold. I have taken action when dealing with my health. I've taken it upon myself to become a certified kidney health educator. This means I can educate people about kidney disease, and the different types of dialysis. My main goal is to keep people from ending up on dialysis(if possible). By this I mean being proactive with their health by exercising more, changing their eating habits if they already have signs of kidney disease, and to take the signs/symptoms of the disease seriously. I feel as though, if I can help one person not end up like me, then it will all be worth it. I am also becoming a big advocate for becoming an organ donor. Organ donors save lives. As far as my lupus goes, well, I'm continuing to research new medicines and continue to do all that I can to keep it under control.
If you would like more information about organ donation, go online, there are lots of great websites out there with a lot of valuable information on them. I have also started my on Facebook page in order to help find my living donor. If you would like to help me and be tested to see if you are my "Angel" donor you may contact Joyce Eller, RN at Vanderbilt Kidney Transplant Clinic. Our bloodtypes don't even need to match, you just need to be in good health to donate. We can do what is called a paired exchange or be part of a kidney chain(I will explain that in my next post). I know this post was long, but I needed to fill you in on the lastest Nikki happenings. Talk to you soon! TTFN!
Nikki
No comments:
Post a Comment