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.
Tuesday, June 23, 2009
BIG NEWS!
Big news! We met with the nephrologist yesterday and she was very pleased with how Scott is doing from a kidney perspective. Scott is now in the “recovery phase” with regards to kidney function. I wasn’t sure this day would ever come! The doctor said that he doesn’t need dialysis right now and she’d see him in a month. His kidneys are functioning at 25-30% right now and they’re hopefully still improving. It’s only when kidneys work less than 10-15% that dialysis is needed. She did say Scott’s kidneys will never be 100% but that’s okay. The reason people can donate a kidney is that kidneys are capable of doing a lot more work than a body needs.
What an answer to prayer this is! I feel very overwhelmed knowing that so many have prayed and fasted specifically for this blessing. This is also the fulfillment of priesthood blessings. This feels almost as big as the news that there was a heart available. I am very grateful and humbled to be so blessed!
What an answer to prayer this is! I feel very overwhelmed knowing that so many have prayed and fasted specifically for this blessing. This is also the fulfillment of priesthood blessings. This feels almost as big as the news that there was a heart available. I am very grateful and humbled to be so blessed!
Monday, June 15, 2009
Cautiously Optimistic
Scott came home overnight on the weekend on a pass. When he is discharged he’ll be set up to get his antibiotics through the picc line with a timed pump. He won’t need a nurse to administer it every 4 hours. It really helped to get out for awhile. Hopefully he’ll be home again in a day or two.
Today Scott went into the OR again. They repositioned his Peritoneal Dialysis catheter. They didn’t have to completely replace it but they still had to go in surgically. He’ll be pretty sore tomorrow again.
Good news though. I’m trying to be cautiously optimistic but it’s hard to keep my hopes at bay. So many have been praying for months that Scott’s kidneys will recover. He’s been on dialysis for over 4 months now. Because he has had no way to do dialysis for the last 10 days he hasn’t had it. BUT…. his kidneys are starting to do some work! There certainly isn’t a full recovery but the signs are good. His frequent blood work is looking good. He is retaining a lot of fluid but his toxin levels are acceptable and not rising so far. Today he started diuretics to get rid of some fluid and they are working too. He is doing so much better than the last time he went 10 days without dialysis in March. The doctors certainly won’t say whether or not he’ll continue to need dialysis yet but they are happy with the current trend. SO AM I!!!!! I just pray that it continues.
Thank-you for all of your kind deeds, words, thoughts and prayers! It really makes a difference to us.
Today Scott went into the OR again. They repositioned his Peritoneal Dialysis catheter. They didn’t have to completely replace it but they still had to go in surgically. He’ll be pretty sore tomorrow again.
Good news though. I’m trying to be cautiously optimistic but it’s hard to keep my hopes at bay. So many have been praying for months that Scott’s kidneys will recover. He’s been on dialysis for over 4 months now. Because he has had no way to do dialysis for the last 10 days he hasn’t had it. BUT…. his kidneys are starting to do some work! There certainly isn’t a full recovery but the signs are good. His frequent blood work is looking good. He is retaining a lot of fluid but his toxin levels are acceptable and not rising so far. Today he started diuretics to get rid of some fluid and they are working too. He is doing so much better than the last time he went 10 days without dialysis in March. The doctors certainly won’t say whether or not he’ll continue to need dialysis yet but they are happy with the current trend. SO AM I!!!!! I just pray that it continues.
Thank-you for all of your kind deeds, words, thoughts and prayers! It really makes a difference to us.
Thursday, June 11, 2009
Did I say it was getting easier?? oops
Still in the hospital. There are a few reasons but Scott feels fine. The antibiotics have been working and he has no symptoms of an infection now. It was confirmed that he had a staph infection on his dialysis line and it progressed to a full-blown blood infection, or sepsis. His cardiologist told him(when he was past the worst) that it was the kind of infection that “could do a person in”. So we’re lucky and grateful we caught it in time. Scott was close to being admitted to the ICU – not the CICU – worse. Thankfully it didn’t get quite that bad.
Scott has been receiving IV antibiotics and will be for the next 3 weeks. He only stayed in the CICU for one day then he was moved to unit 81 – the same room as before. They plan on putting a picc line in his arm again so he can go home on the meds. BUT the big issue is dialysis. Now he can’t have hemodialysis because they took out the catheter for access. Because he already has a PD catheter line that was put in surgically over a month ago they were just going to start PD dialysis Tuesday night. When they tried to use the PD line it didn’t work properly. They took an xray and it isn’t in the right spot. Now surgery gets involved again to make it work. But that means wait and wait and wait. So Scott feels fine and wants to come home but instead he sits in a dreary hospital room on a beautiful, sunny day waiting for a surgery that could take days to happen again. This really stinks! I try to tell myself to be grateful because it could be so much worse but it still isn’t easy.
Scott has been receiving IV antibiotics and will be for the next 3 weeks. He only stayed in the CICU for one day then he was moved to unit 81 – the same room as before. They plan on putting a picc line in his arm again so he can go home on the meds. BUT the big issue is dialysis. Now he can’t have hemodialysis because they took out the catheter for access. Because he already has a PD catheter line that was put in surgically over a month ago they were just going to start PD dialysis Tuesday night. When they tried to use the PD line it didn’t work properly. They took an xray and it isn’t in the right spot. Now surgery gets involved again to make it work. But that means wait and wait and wait. So Scott feels fine and wants to come home but instead he sits in a dreary hospital room on a beautiful, sunny day waiting for a surgery that could take days to happen again. This really stinks! I try to tell myself to be grateful because it could be so much worse but it still isn’t easy.
Monday, June 8, 2009
Back in Hospital
I know I said on my last post that I wouldn't update for awhile. But when things get hard it helps me to do the updates. Yesterday(Sunday) Scott took his temperature like he does every morning. It was definately a fever at 39.2 degrees Celcius. After calling the transplant team they said to wait and see if it got better by the evening. Unfortunatley it didn't and the chills started. So they told us to go into Emergency. It was a short wait in the waiting area when the doctor calls to say you are coming. After getting a bed in the ER they did a bunch of blood work and hooked Scott up to everything (blood pressure cuff, heart monitor, IV etc.) His fever kept rising. At one point it was 41.7!!!! They told us they were going to admit him for an infection. He had a rough night with blood pressure dropping and a high heart rate, body-shaking chills and a consult with the ICU doctors. In the morning they took out the dialysis line from his neck. It looks like that was probably the source of the infection. We won't know for sure until the results come back from the tests on it.
After a night and a morning in an ER bed Scott was finally admitted to the CICU. Back to that place again. His fever is getting better but he's just plain wore out from fighting this big infection. Hopefully it's a good night tonight and the antibiotics do their job. I'm praying for a short hospital stay!
After a night and a morning in an ER bed Scott was finally admitted to the CICU. Back to that place again. His fever is getting better but he's just plain wore out from fighting this big infection. Hopefully it's a good night tonight and the antibiotics do their job. I'm praying for a short hospital stay!
Sunday, May 31, 2009
Good is fine with me
I’ve been wondering whether or not to continue my public updates on our day to day accomplishments and struggles. I don’t mind sharing but Scott is more private than I am and doesn’t always want all of his personal health details ‘out there’ for anyone to see. It started as a way for me to answer the questions everyone was asking in a format that allowed me to spend less time on the phone and explaining the same things over and over. It turned into much more for me. It became a way to feel connected with others, share my story(Scott’s story really) , document an important series of events, and feel support from many people near and far. If it was only my story I would continue to blab away but it isn’t just me. I think Scott just wants to move on, not dwell on the past and be that ‘normal’ person he has always desired to be. He is getting tired of talking about health stuff. So this will be my last health update for a time.
So “How is Scott doing?” He would say ‘good’. It is true. As I often reflect on the past year and especially the past 4 months since his heart transplant it has been such an amazing journey! The roller coaster has leveled off dramatically and we’re coasting along nicely. There are still bumps and wobbles but the extreme ups and downs seem to be behind us. I know I sound like a broken record but I really would like those kidneys to shape up! It’s also a different life living immunosuppressed. When an immune system is deliberately held back from fighting off everyday germs, those everyday germs become a big issue! We are handwashing maniacs! Don’t be offended if you shake Scott’s hand and you soon see him pull out the hand sanitizer! It’s not just you.
Scott had a heart biopsy 2 weeks ago. It was the first that showed any sign of rejection at all. He was at a level 1 out of 4(4 being the worst). The transplant team is not worried at all about a 1. They have lowered Scott’s immunosuppressant medication so he can fight an infection he’s been slowly developing. It is such a balancing act! He has another biopsy this Friday. I hope it is still good. Scott keeps getting stronger – again slowly but surely. There are many pounds of muscle to rebuild. But it is coming.
So things are good. Not fantastic, not terrible, but good. And good is fine with me.
So “How is Scott doing?” He would say ‘good’. It is true. As I often reflect on the past year and especially the past 4 months since his heart transplant it has been such an amazing journey! The roller coaster has leveled off dramatically and we’re coasting along nicely. There are still bumps and wobbles but the extreme ups and downs seem to be behind us. I know I sound like a broken record but I really would like those kidneys to shape up! It’s also a different life living immunosuppressed. When an immune system is deliberately held back from fighting off everyday germs, those everyday germs become a big issue! We are handwashing maniacs! Don’t be offended if you shake Scott’s hand and you soon see him pull out the hand sanitizer! It’s not just you.
Scott had a heart biopsy 2 weeks ago. It was the first that showed any sign of rejection at all. He was at a level 1 out of 4(4 being the worst). The transplant team is not worried at all about a 1. They have lowered Scott’s immunosuppressant medication so he can fight an infection he’s been slowly developing. It is such a balancing act! He has another biopsy this Friday. I hope it is still good. Scott keeps getting stronger – again slowly but surely. There are many pounds of muscle to rebuild. But it is coming.
So things are good. Not fantastic, not terrible, but good. And good is fine with me.
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