2 Year Anniversary

In two days it will be two years since Scott's transplant. It is still amazing. Although life continues on and our new normal is happening it still fills me with awe to know that Scott was one of relatively few people to receive this amazing gift.

Yesterday Scott had a biopsy. He recently changed his main immunosuppressent that was causing the colitis. It has since resolved!!! YAY!!!!! He is feeling so much better. The doc who did his biopsy commented on how good Scott was looking. He also said something that really stuck with me. He said that Scott has had a really rough two years since his transplant but he is much better than he was before the transplant. Sometimes I need that reminder when the medication side-effects are really difficult.

I'm grateful to have this anniversary to remind me of how far we've come. Looking back can be a faith-building experience. I still have little nagging fears about the future but I usually choose to focus on the present and enjoy every day we've been given together.

HAPPY NEW HEART ANNIVERSARY SCOTT!

A relatively short hospital stay

Because this blog is my place to vent when I'm worried and/or frustrated about the ups and downs in Scott's health I have a new post. Last week Scott ended up in the hospital for 3 days. It's been well over a year since he's stayed overnight in the hospital. It's pretty good that he went so long. It's also good that this stay was relatively easy and he felt pretty good.

For the past many months Scott has been suffering with some difficult symptoms that have caused weight loss and a general feeling of BLAH. He was recently diagnosed with Colitis which seems to be the cause of these symptoms. I understand that there are many causes of Colitis and we don't know for sure which one is causing Scott's. Quite a few causes have been ruled out so the docs think it is medicine-induced. The problem is he takes so many meds and some are absolutely essential to keeping his heart from rejection. We don't know what they'll do about it yet. We're waiting for an appointment with a specialist in a few weeks.

That brings me back to the hospital stay. Scott has been feeling generally poorly for awhile. He's cold most of the time(he has no insulation), and he could sleep anytime(he sometimes does). Last week he came home from a day of work and started shivering and he felt awful. I took his temperature and he had a significant fever. When Scott has a fever and no symptoms of cold or flu we assume he has an infection and to the ER we go.

He had the shortest, most efficient ER experience to date and was admitted to the hospital in a few hours. After IV fluids and IV antibiotics he started feeling better very quickly. He had to stay for 3 days to complete the course of IV antibiotics. They never found what the infection was but he feels better so that's enough for me.

I am actually very happy with how this turned out this time. It's not nearly as hard to leave Scott at the hospital when he feels pretty good and can take care of himself. It was much harder the other times. I sure am glad he's home now though!!!

I keep hoping that a time comes when Scott is energetic, feeling great and back to all normal activities. Although he's not there yet he really has come a long way! Every day I'm grateful to still have him here.

Vacation!

We made it! It was a wonderful vacation. We enjoyed Disneyland, the beach, the Birch Aquarium, San Diego Harbor and a relaxing, private house with a pool. We were gone for two weeks and we could have stayed longer. It was really nice to not have any commitments including work, school, lessons, or appointments.

Scott did have a few medical incidents while we were gone though. He noticed a small sore on his leg the night before we left. During our first day which included our flight and a drive he noticed the sore getting more tender and a redness growing around it. We were discouraged because that was looking a lot like an infection that needed taking care of - especially for the immunosuppressed! So we spent a long evening at the Emergency of the local hospital in Anaheim. I was impressed with the care Scott received - he was seen by an Infectious Diseases specialist and prescribed 10 days of 2 different antibiotics. They also took a sample of the sore and later told us that is was MSSA(the more easily treated staph infection).

Although Scott received excellent care I am really grateful to live in Canada with universal health care. I don't want to jump into the debate regarding private vs. public health care but I really appreciate that I don't have to worry every time we need medical care that it might bankrupt my family. I know that we sometimes wait longer here and sometimes the staff is overworked and sometimes the system is overloaded but I also know that I don't worry about co-pays or whether or not my insurance covers this or that and I don't have to sit down with a hospital administrator to explain how we'll pay every time any of my family needs medical care. It's good to know that during times of medical crises my focus has been about Scott and his health, not how we are going to pay for his medical needs.

I certainly don't understand all of the issues the US is facing regarding health care but I have seen my brother-in-law's family in Utah struggle with paying for life-saving medical needs while unemployed and uninsured. I have wondered if we had lived in the US when Scott needed his transplant if we would be drowning in medical debt right now. I guess I'm glad I don't know the answer to that question.

Scott did have another trip to a clinic to have a presciption filled for another $200 that would have been completely covered at home but I know that's small change compared to what others deal with. We also had to get our son, Sam, new glasses when the ocean waves stole his only pair right off his face. Another $160 gone. Despite those small incidents we really had a great time!

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.