My Turn - to a very small degree

We've had a nice summer. We've spent time with family and friends and stayed close to home. The weather was crummy in general but we still found ways to have fun. We are looking forward to extending our summer soon by taking a trip to California for some sun, Disneyland and family time. I can hardly wait!

The last few days were an interesting change from the last few years. I had a little turn to be the sick one while Scott held down the fort. I had some stomach bug that made me stay in bed for nearly 3 days. I know it's nothing compared to Scott's solid 6 months in hospital and all he's been through but it did give me a tiny glimpse of how he felt - and vice versa. It really is best when everyone is healthy!!! It's hard being the sick one - needy, useless and whiny(in my case only). It's also hard to be the healthy one and take care of the family, house, and the sick person but Scott did a great job. I think he was truly relieved to be on the other side for a change.

Our current goal is for Scott to stay healthy not get that awful stomach bug before or during our upcoming trip! Wish us luck.

It's All in the Attitude

I’ve been thinking I should update the blog for weeks now. The problem is that there isn’t much to report. Scott has had 2 biopsies since last update – both a 1 – fine. I guess there is the news that he has been completely off prednisone for a week now!! That sure took a long time. He will have another biopsy in 2 weeks to make sure there is still no rejection after stopping prednisone.

Hopefully after that Scott can go a whole month or more with no biopsy. His neck is looking bruised and full of holes at the site where they do the biopsies. It will be nice to give that a chance to heal up.

Tomorrow will be a year and a half exactly since his transplant. I am having a bit of a hard time updating because I feel a little ungrateful. I know I should just be happy that Scott is still here and doing relatively well. Sometimes I have a hard time not comparing our circumstances to others. Other guys and girls we know who have had heart transplants after Scott have competed in triathalons, climbed mountains, walked 5 miles a day and accomplished so many wonderful physical feats. Scott doesn’t even have the energy to take the stairs, go for a walk or work out at all and he had to cut back on work hours when he’d hoped to increase them.

I don’t want to be a negative person. I want to look on the bright side. I want to be grateful. Sometimes it takes a lot of effort though. Sometimes I just want to whine, rant and complain and say how it’s not fair. Something always happens to humble me when I go to that place. I am made aware of others who have more difficult circumstances than me. In the past month I have definitely been reminded of how much harder it really could be. I have been inspired by the resilience of others in difficult circumstances.

I will continue to work on making the right choice. I CAN be grateful. I CAN be positive. There IS a bright side. It is true but it takes effort to see. My job is to make the effort. I’d better get to work.

Today is a great day. My family is together. (how was that?)

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!!!