Three Years!!!

I have no good excuses for not updating this blog. No news is good news. The good news is that Scott has been feeling steadily better for a year now! A few days ago we celebrated his 3-year anniversary with a new heart.

At the very beginning of 2011 Scott's main immunosuppressant was changed from Sirolimus back to his original Tacrolimus. Who knew what a differnce that would make?! After he switched to Sirolimus in early 2010 because of the BK virus, he started having digestive issues, lost 30 lbs that he didn't have to spare and felt generally fatigued and blah. I have to admit that it was a bad time. He cut back on work, was kind of cranky and didn't feel up to much. It was way better than not living, slightly better than heart failure but significantly worse than he feels now.

Each month of 2011 Scott felt a little better. The digestive issues resolved and his energy increased. He gradually added hours to his work week, he joined a gym and he started to have a spring in his step. I cannot believe the difference! He finally knows how it feels to be well. He comes home from the gym surprised and excited about how many laps he ran, how much weight he lifted and how much energy he has left after a workout. I wish I had the motivation he does! The contrast between well and not well is very obvious to me now. It's hard to smile and have a good attitude when you don't feel well. It takes a lot more effort than when you feel good. Now that Scott feels good, he is happier. The chain reaction is that I am now happier, our kids are happier and life is better.

THAT is the way a heart transplant is supposed to work. We met a few people with heart transplants while we waited on the wait list. They all seemed so normal and healthy. There was a time when Scott had been in the ICU for weeks that I felt frustrated. I felt that the only heart transplant experiences we had heard of were so much easier than what we went through. I watched others receive transplants and come and go while Scott had many setbacks and struggled to make tiny improvements. Truthfully I wondered if it would ever be worth it. I felt that life was just not fair. Why did he have to be in the ICU for almost 7 weeks after his transplant? Why did his kidneys have to fail? Why did his new heart not work right away? Why did he get the BK virus and cellulitis and Colitis??? I still don't have the answers to those questions but it just doesn't seem to matter now that those issues have passed.

The fact that someone elses' heart beats inside him will always be a part of our lives. He will always be immunosuppressed. However, sometimes I forget for days that Scott had a heart transplant. Health issues do not permeate every aspect of our lives anymore. Thankfully Scott remembers at least twice a day to take his medications. He also remembers when he can feel blood pulsing in his fingertips after exercise or he can walk briskly without getting out of breath because of the young, healthy heart he has been so blessed to receive. He is no longer fragile. He is strong. He is happy. I am happy.

We travelled to Italy in September. This is us in Milan on our last day. It was all worth it!

Balance

Results are in.

The kidney biopsy showed mild kidney damage. We don't know if the BK virus is the cause or if Scott's previous kidney problems are. We can live with that. His kidneys are actually performing better than they ever have since his transplant. That is probably because the kidney-harming drug, Tacrolimus, has been stopped.

Tacrolimus - that brings me to the next result...Heart Biopsy. Not good. Rejection. His results were a 2R. Last time he had a 2R his steroids were increased massively and weaned down slowly. This time there seems to be a reason for the rejection. Changing all of the anti-rejection drugs is the probable cause. So the plan is to slightly increase the steroids, increase and monitor the other drug levels and biopsy again next Wednesday. Hopefully the biopsy result will be better without the huge steroid treatment. If not IV steroids will be the treatment next week.

I really hope for a good result next week!! It is such a balancing act keeping an immune system strong enough to fight off infections but weak enough to NOT attack a transplanted heart. I'm praying to finally reach that balance. I appreciate all of the added prayers from many of our family and friends.

Scott is feeling good right now. He is back to work, exercise and life. This is a 'silent rejection' at this point with no symptoms and I hope it stays that way!!!

BK Virus

Have you ever heard of BK virus? I hadn't - until last week. It's another one of those things that a normal immune system keeps in check but a suppressed immune systen can't always manage. BK virus seems to be the main culprit in Scott's horrible week last week. This is a virus that is present in the majority of people. If it is allowed to grow unchecked it has some severe symptoms. Mainly extreme fatigue and kidney damage. It is well-known with kidney transplants but is not common with heart transplants.

Last Friday Scott began a new drug regimen to conquer this new difficulty. His main immunosuppresant was stopped and a new one with antiviral properties was started. He was put back on prednisone(that nasty steroid) again after only having stopped for 2 weeks. He will have a kidney biopsy tomorrw and a heart biopsy next week. He hasn't been able to work these last 2 weeks. BUT...He's feeling back to normal! The fatigue is gone, the bloodwork showed his kidney function is back to his normal and he'll go back to work again next week.

I'm so grateful for a fabulous medical team that doesn't give up on us. This virus isn't something they usually test for but they figured it out. Without treatment Scott could have lost all kidney function. I feel like we dodged a bullet there!

It's great to see Scott feeling back to normal again. I remember before his transplant his nurse told us that a transplant wasn't a 'cure'. It was trading one set of problems for another. Transplant is only considered when the first set of problems(heart failure) was sure to take a life soon - only then is the second set of problems(suppressed immune system, drug side effects, surgery) worth it. I now know what she meant. Thankfully it has been worth it.

This Time Last Year

This is Scott and the kids sometime during the hospital stay before the transplant.

I keep remembering. So much has changed in a year. Yesterday I read many of my updates from the time Scott was in the hospital. Sometimes it seems like a decade ago Sometimes it feels like it was yesterday. Scott is in the middle of the plethora of tests that are done one year post transplant. ONE YEAR!!! The tests are annoying and time consuming but worth it. He is alive. He is well. We are together. Our kids have a dad. Blessings.

This time last year we were waiting…wondering… hoping…worrying. We had no idea when the day would come that a heart would be available. I had no idea how close Scott would come to leaving this earth. I see now that I was naïve and unprepared. I remember the warnings from the medical staff of the risks and complications of the heart transplant that I either ignored or didn’t let sink in. I clung to the positive. About 2 months after the transplant, when Scott was back in Calgary, I spoke with one of the cardiologists that we had come to know well during the nearly 2 months Scott was in hospital before his transplant. I asked him if he had any idea how hard the transplant was going to be for Scott. I wanted to know why we weren’t better warned. I’ll never forget how he looked at me and said simply, “There was no other choice”.

I sometimes find myself wondering about the ‘what ifs’ about that time. What if a heart didn’t come? How long would Scott have lasted? What if the new heart worked immediately? How would I have coped either way? How would Scott have coped? I know, I know – why torture myself? I’m the kind of person who keeps looking back and trying to make sense of my life. Scott is the kind of person who just gets on with it and moves forward.

I think one result of this past year is that I am more paranoid about Scott’s health. Every twinge of discomfort he has(and there are many) reminds me of his previous heart failure symptoms and I am in constant fear of rejection. There will always be those risks. I just have to learn to deal with them. I’m getting there. I need to remind myself that every day is a bonus and live accordingly. So here’s to many, MANY more bonus days!

2010

It's a new year! Wow, 2009 was one never to be forgotten. Nearly half of 2009 was spent in the hospital for Scott and running back and forth from the hospital for me. It was a year of blessings. Scott received the greatest gift - a new heart. We are truly humbled by it. We were supported by the countless prayers and acts of service from so many. We were literally held up. I feel like I had my darkest moments and my greatest triumphs - all in a short period of time. I only need to remember what I almost lost to be grateful for every little part of life - including the difficult and mundane. I've gotten to know many good people through this experience and become closer to others. I can look back now with a little perspective and realise the good that has come from this difficult experience. I haven't decided I could do it again but I can say that I'm glad we got through it!

Happy New Year Everyone!


What a year!