Making a Difference

Yesterday I was a volunteer canvasser for the Heart and Stroke Foundation. I have volunteered during the annual campaign for 5 or 6 years now. Usually I go from door to door on my route, collect a few bucks, turn it in and feel like it wasn't really worth the effort. Most people aren't willing to give money at the door and
I truly dislike solicitors at my door or calling on the phone. BUT I feel an obligation to do my small part to improve the lives of those dealing with heart disease.

Yesterday went differently than any previous canvassing experience. It may have been becaue of the rain and people were home or it may have been my new spiel. I would introduce myself by name as a neighbour(I canvassed my own street) and then say, "About a year and a half ago my husband had a heart transplant and this is my small way of giving back. Can you donate to the Heart and Stroke Foundation -any amount -great or small?" People responded more positively than ever before. Even if it was only $5 I knew that this time it was worth it! Many of my neighbours(who I'd never met) showed genuine concern and suprise that someone in their neighborhood went through a heart transplant.

It is a big deal!! Can you believe that surgeons can take out a weak, inefficient heart then put in a strong, healthy one!? Do you know that, without a transplant, Scott would not be here today. He probably wouldn't have made it to a year ago.
Nineteen months ago Scott was is the hospital with a very weak heart. Every time the doctors tested his heart off the strong IV medication, dopamine, his heart didn't have the strength to get enough blood to his kidneys and his kidneys would gradually fail. He was failing fast.

I know with the research being done today there is so much potential to improve the lives of those living with heart failure, improve the success of transplants and other surgeries and also improve the quality of life after transplant.

I didn't raise millions of dollars for research but my little route donated quadruple the previous record! That is something.

Biopsy Results - AGAIN

There hasn't been much to update the last few weeks. Scott had to cut back on work hours due to general fatigue. That BK virus is probably the culprit still. He had a biopsy 2 weeks ago that was fine - 1R. There really isn't any other news. Another biopsy is scheduled for this Wednesday. That will be 5 heart biopsies in 2 months!! Yuck. It is better than being in the hospital though. Scott had been out of the hospital for a year now. I'm so happy that we made it through.

Heart Biopsy Results

The results are a little confusing this time. This is the rating scale as I understand it for heart biopsies:

0R - no rejection
1R - mild rejection (no treatment needed)
2R - moderate rejection (usually steroid treatment is given)
3R - severe rejection (usually hospitalization and ????-I'm glad I don't know)

Last week Scott had a 2R. This week the same pathologist classified him as a 2R again. However, the results were sent away to another city to have another pathologist look at them again. This pathologist says the results are a 1R. He is sure. He says the 2R from this week is probably the result of the close time between biopsies and the heart hasn't completely healed from last weeks biopsy. He also says that last week's biopsy really was moderate rejection - not just inflammation from infection.

Our transplant team is going with pathologist#2. That means a 1R this week and NO TREATMENT NEEDED!!!

Sorry about the long explanation. I'm just sorting through this news myself. I'm slowly learning to not worry about what the transplant team isn't worried about. They know a lot more about rejection than I do. I do appreciate that they listen to us and investigate carefully when they are unsure. I've learned to trust them.

Hopefully we level off again after this last bump on the road. I'm thinking positively and I expect May to be smooth...and June...and July...and August...and 2011...and 2012........I can dream, right!!

Here is a link to information about heart biopsies if you're interested in medical procedures. They're pretty much 'old hat' to us now.

Silver Linings

I was cleaning up a pile of papers today and I found my calendar from 2009. I keep my calendars for a few years because I can check back to see when important appointments happened, birthdays etc. When I found the calendar I sat down to flip through it. I looked at the dates in January. Knowing that Scott’s transplant would be on January 29 I looked carefully at the weeks and days leading up to Jan.29 and remembered what I was doing. I had many names of people written on the days. These were the names of people who offered to bring meals to my family and care for my kids while I went to the hospital. I am again overwhelmed by the enormous amount of service we received during those months before and after the transplant.

As I turned the calendar to February I noticed a change. I was not at home during all of February and most of March. There were a few things written on the calendar in my writing but I noticed the writing of my mother-in-law and mom as they each spent many weeks caring for our 4 busy children. They wrote in birthday parties, school field trips, lessons and other events just as I would have. It hit me hard today how much they – along with their husbands and my siblings – did for our family during that very difficult time. I had a need at that time. I needed my kids to be cared for so I could care for Scott. My wonderful family and friends stepped in and loved my children and met their needs when I wasn’t available.

I don’t think my kids were negatively affected at all by the whole experience. Instead I think they learned many important, positive lessons. They learned that prayers are answered as they prayed daily for their Dad. They learned that in their time of need they can count on others to support and help them. They learned that there are good – no GREAT – people in their family, at church, in their schools and communities. They learned to help each other. Many, many times my younger kids were tucked into bed by their older siblings. They learned of love, miracles and family.

I’m still not at the point where I am grateful that Scott needed a heart transplant. I do have the perspective now to be grateful for some of the silver linings that came along with it though. Maybe one day I’ll understand better why we needed to have this experience but for now I’ll just keep looking for the silver linings.

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.

Today is better

Yesterday I was pretty low. After a few days of Scott feeling terrible and no answers I let myself get out of control with worrying. Today is much better. Scott is feeling a little bit better and we saw the medical team today. Those nurses are amazing! They really care about us and are trying to make sense of Scott's symptoms and figure out what to do.

Right now they think all of his current problems may be the result of his immunosuppressant drug levels getting too high. That can cause kidney damage, the elevated EBV levels, the low white cell counts and other smaller issues. Hopefully they are right because that is simple to deal with - lower his doses. His one med was lowered on Monday and he is already feeling a bit better. They lowered another one today and talked about getting a special authorization to switch to a new drug with less side effects that is not approved for general use in Canada yet.

It always helps me to think that something is being done. I like a plan. I think my problem the last few days was that I was standing by, helpless, watching Scott be sick and not doing anything about it except internet research. That didn't help Scott or me at all. It probably made it worse for me. There's no need to worry about what may happen when the present is difficult enough.

Thanks to everyone who cares about us, sent messages, commented and prayed for us. I know my post yesterday was pretty depressing. Some days are like that but most are much better. I do feel that Scott is going to be fine, we'll work out the present issues and enjoy life. Even if I'm wrong it doesn't help to sit here and waste energy on worrying about what I can't control. Today IS a better day.