It is true! Scott is completely tube free! His peritoneal dialysis catheter was removed today. He has no medical paraphernalia attached, implanted, tunneled, inserted or hooked up to him. That is a first in almost 9 months. Now he can have a shower for the first time in months. He doesn’t have to use any saran wrap in the shower either(to keep paraphernalia dry).
The appointment with the nephrologist went great! She said that Scott’s kidneys have been working 35-45% over the last month and they may continue to improve. We may not need her services any more. Can you believe that!?!? I am still amazed!
Because of Scott’s kidney improvement, his anti-rejection medication levels have not been very consistent. They keep changing his doses and therefore need to biopsy more often.
The biopsy for Scott is a huge pain!! Most heart transplant patients have a biopsy done through a vein in the neck. They use minimal local anesthetic and it takes about half an hour to go in and get microscopic pieces of heart tissue. It is done in the echocardiogram lab at the hospital. Scott however has unusual anatomy and veins. Due to that and other issues Scott has to have his biopsies done through the groin. Because this is a more complicated procedure he needs more anesthetic and it needs to be done in an operating room settting called the catheterization lab. He also has to lay flat for at least 2 hours after the procedure. Then he can walk around for an hour. Then they take out his IV, give us a speech about how to care for the site, and give us the spiel about the possibility of fatal bleeding. Nice. The entire process always takes about 6 hours. Not fun!
Scott is scheduled for another biopsy on Monday. He has had them every 3-5 weeks for months. The last 4 have been 1R – very mild rejection. I keep hoping for some zeros. Maybe then they can increase the time between biopsies. I guess I should be grateful that the worst thing now is biopsies. I am. But I can still hope for fewer of them, right!?
Friday, July 24, 2009
Saturday, July 18, 2009
Gratitude
Life is good! Maybe even great. The promised changes are happening. Sometimes it still stops me in my tracks – Scott has a new heart!!! This heart is healthy. I sometimes think back – especially to the year before his transplant. I always knew Scott had a heart problem but it never seemed like a big deal to me. He was just Scott. His slowing down physically was quite gradual to me. We just got used to it. Scott complained very little. He just kept on trucking. We got used to the fact that he just moved slower than most and needed frequent rests. Now I know that Scott was experiencing heart failure – his heart wasn’t providing adequately for his body. It now makes sense to me why he had such a terrible time in Las Vegas last summer. Did you ever notice as you walk around the hotels that the only place there is to sit is at gambling stations?! So when we walked around as a family Scott would become VERY tired and want to sit down. We don’t gamble and we had our kids with us so Scott wasn’t allowed to sit in any of the thousands of available chairs while walking through the enormous casinos!! He never wants to go to Vegas again!
We were able to go on a vacation already this summer. We attended the Hornberger Family Reunion in Summerland, B.C. We had a wonderful time! We had been preparing to attend while Scott was doing dialysis and we were trying to figure out how he could do dialysis there. I am so grateful that his kidneys have recovered enough that we didn’t need to transport dialysis equipment on our trip or spend time doing dialysis there! The human body really is amazing!
Scott only has one tube left in his body. He still has the peritoneal dialysis line in his abdomen. He couldn’t go in the water on our trip which was a bummer and he still can’t shower. On Monday we meet with the nephrologist again. Scott’s dream is that she will recommend removing that line. Last time we met with her she said that was a possibility. Then Scott will be totally TUBE FREE!!!! No picc line, no dialysis lines, no oxygen, no dopamine, no IVs, no chest tubes…NOTHING. Nothing to clean, maintain or possibly cause infections! I can hardly wait.
It has almost been 6 months since the transplant. One year ago I had absolutely no idea what was in store for our family. I have learned so much. I have never felt so afraid and overwhelmed as I have this year BUT I also have never felt so loved and supported. It still isn’t always easy. Scott will always have many, many medications to take and bloodwork to be drawn and biopsies and clinic appointments. He will have to be very aware of his own body and health. But it is such a small price to pay for this new opportunity.
Just one more note as I am just going on and on. I often think of the family of the person from whom Scott’s new heart came. They must still feel such pain and loss. Six months is not much time to ease the pain of loss. Yet in a time of deep anguish they chose to give us such a gift! Again I am overwhelmed with gratitude. The blessings in my life are so tremendous and numerous that I can’t begin to number them. Just know that my gratitude runs deep.
We were able to go on a vacation already this summer. We attended the Hornberger Family Reunion in Summerland, B.C. We had a wonderful time! We had been preparing to attend while Scott was doing dialysis and we were trying to figure out how he could do dialysis there. I am so grateful that his kidneys have recovered enough that we didn’t need to transport dialysis equipment on our trip or spend time doing dialysis there! The human body really is amazing!
Scott only has one tube left in his body. He still has the peritoneal dialysis line in his abdomen. He couldn’t go in the water on our trip which was a bummer and he still can’t shower. On Monday we meet with the nephrologist again. Scott’s dream is that she will recommend removing that line. Last time we met with her she said that was a possibility. Then Scott will be totally TUBE FREE!!!! No picc line, no dialysis lines, no oxygen, no dopamine, no IVs, no chest tubes…NOTHING. Nothing to clean, maintain or possibly cause infections! I can hardly wait.
It has almost been 6 months since the transplant. One year ago I had absolutely no idea what was in store for our family. I have learned so much. I have never felt so afraid and overwhelmed as I have this year BUT I also have never felt so loved and supported. It still isn’t always easy. Scott will always have many, many medications to take and bloodwork to be drawn and biopsies and clinic appointments. He will have to be very aware of his own body and health. But it is such a small price to pay for this new opportunity.
Just one more note as I am just going on and on. I often think of the family of the person from whom Scott’s new heart came. They must still feel such pain and loss. Six months is not much time to ease the pain of loss. Yet in a time of deep anguish they chose to give us such a gift! Again I am overwhelmed with gratitude. The blessings in my life are so tremendous and numerous that I can’t begin to number them. Just know that my gratitude runs deep.
Subscribe to:
Posts (Atom)