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.

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.

Worry

Worry. Is that my new middle name?? I thought I was used to the ups and downs by now. Maybe I never will be. It has been a down week. Fortunately Scott's last 2 biopsies were a 0 and a 1. Just fine according to the transplant team. Something else is going on though. Scott has next to zero energy. He sleeps most of the day. It's as bad as heart failure. He is weak and listless. He manages okay when he stays home and lays down most of the time but if he ventures out he is completely spent. He went out to get bloodwork done yesterday and hardly moved after that.

Something is definately wrong!! His kidney function has been steadily decreasing during the last 2 weeks and his EBV levels are higher than they've ever been. EBV(Ebstein-Barr Virus) is what causes mononucleosis. I've read that over 90% of the population are EBV positive but most people never have any symptoms. Because Scott is immunosuppressed his EBV levels are regularly monitored because they can escalate out of control without a normal immune system to keep them in check. He has also stopped prednisone which can cause withdrawal symptoms.

What is going on??? My overactive, worried imagination is getting out of control. Add to that some scary internet research and statistics and I'm feeling moments of sheer panic. The medical team is aware. But they don't KNOW what's going on either. I decided to write out these worries with the hope of seeing everything rationally and keeping my panic in check. My biggest worries are:

1)kidney failure again -> dialysis -> kidney transplant
2)EBV has been linked to some cancers in transplant patients
3)rejection - ALWAYS rejection

There they are - in black and white. I admitted it. I'm terrified. I don't want to do the hospital again. I don't want to get back on that ride. There it is. Out there for anyone to see. Maybe I'm not as strong as others think. Maybe everything will be fine - maybe it won't. I hate not knowing. Whenever I let myself think of it I feel a squeezing in my chest like I can't get enough air. PANIC. Then I take a deep breath, slow my breathing and try to think positively. I can do this, I can do this, I can do this. It's going to be okay. It's going to be okay. Right??

Back to Normal?

Now the year mark has long passed. Life continues as it always has. I still run around trying to get everyone where they need to be. Life is busy with the pre-transplant stuff again. The medical appointments seem quite far apart now. Sometimes there is nothing for a month or more! Scott has another biopsy tomorrow though. If this one is good and the next one too he should be able to discontinue the steroids finally. They are the current cause of irritating side effects that we hope clear up in the weeks after the steroids are stopped.

Scott is working 3 days a week. He has missed a few of those days due to catching some nasty coughs and colds recently. We also took some time to get away with extended family on a ski vacation last week. I had a fun time and the kids did too. Unfortunately Scott didn't feel well about half of the time with a bad cold so he didn't try skiing. He still had a good time though.

Many people ask me how Scott is doing. Considering how he was a year ago he is fantastic! I'm not sure if it will ever be a smooth ride though. Every little illness is always bigger for him. He still has long-term effects from the ordeal like some pain, osteoporosis, skin issues and muscle weakness. I have hope that they will improve but we have no guarantees. I had my hopes set high with the great physical feats a heart transplant would allow. Those hopes haven't been realised at this point. That doesn't mean we're not happy though. You don't have to be a marathon runner or body builder to be successful. Scott proved that long before his transplant. I guess I can say that things are "back to normal" now.

Keep On Keeping On

It has been one year today since my transplant and Melanie has asked me to do an update for her blog so here goes…

I am not sure why people read blogs, but I suppose it could be to get updates of other’s lives, compare their situation with whomever they are reading about, or maybe because they as an interested reader have more empathy than I can imagine. Regardless of your reason for reading this blog entry I hope that what I say somehow adds to your life, and even more so, that I can be honest as I write and that you won’t be disappointed by what you read.
I have to start this by admitting something that I have rarely even let myself think about, and that is that at times I have wondered if the journey of this past year and a half has been worth it. I say this for several reasons:

First and foremost is the price that was paid to allow me to live beyond the 29th of January 2009. Someone died to allow that to happen. I don’t even have words to begin to explain the pain that their family must have felt that day. I also lack the brain capacity to process how those good people had the wherewithal to look beyond themselves and make a decision that must have turned a very tender situation into a complicated legal and medical process. For me to have an opportunity to live because some other Canadian gave so much causes me to weigh the value of my life.

Second, is the fact that this journey has taken my family and I down a very long and difficult road. Really, I mean this has been hard physically, mentally and emotionally. Physically it has not been a comfortable experience for me and my body is still weak in a lot of ways. But I am getting stronger and I have been blessed with phenomenal support (and when it’s really necessary drugs.) However, I think that the sacrifices and difficulties my children and Melanie have endured over the past year and a half are not fully appreciated, even by me. Somedays I feel like a pig living in a temple. I really don’t understand how they put up with me. So, I wonder somedays if another outcome wouldn’t in some ways have been easier.

Lastly, I wonder what this will all add up to. Will the sacrifice of others and the inconvenience, indignity, and hardship this experience has caused me and my family add up to some miraculous outcome? Was it worth it for a family I will never know to endure greater pain just so I could persist a little bit longer on this earth and continue to struggle myself? Nobody can say for sure.
But, I guess that brings me to the part of this blog entry that I hope will add a little to those who, for whatever reason, take the time to read this. If I have learned anything from this experience, and if I can share with you any wisdom from this part of my life, it might simply be that like Bon Jovi says “You live for the fight when it’s all that you’ve got”.

I am glad to say that in November 2008, when Melanie and I were not quite so sure things would turn out well that that was the sentiment I felt in my heart although I certainly didn’t have words to express it at the time. And, although the road has continued to challenge me I can now see that fighting is the only option. There is no peace to be had by giving up and refusing to engage whatever undesirable entity or force that will relentlessly pummel you, even if you do throw in the towel.

Lately, in some small ways, I have enjoyed the struggles I have had and I hope that gradually over time I will be less of a trial to my family and contribute a greater portion of happiness to them. Perhaps one day I may become like Melanie who has always had an unrelenting capacity to be positive and work quickly through whatever needs to be done.

Until that day I am content to keep on keeping on and accept the fact that neither I nor my donor’s family or even my own family will know for sure which of all the possible outcomes would have been the best. Also, to realize that as we pursue our journeys to completion we must continue to fight. I think it helps to decide ahead of time what things are worth fighting for, what things we want to fight for and may be even some things we will fight against. I have learned too that as our journeys continue, even in times of trial, the things worth fighting for will often bring unbidden smiles to our faces when we take the time to turn our faces toward them.

In the end all we can do is all we can do. When it comes time to make a judgment call as to whether or not it was all worth it the only question we will have to ask ourselves is…well I won’t tell you because you already know what you will ask yourself. But for me, I will need to live in such a way that I can convince myself on that day that during my mortal life I lived, fought and worked unrelentingly to be the best I could be and that I gave even more to my family and those around me than I did to myself.

Perhaps this all seems a little too grandiose and like a lot of over-indulgent philosophy. I acknowledge that many, if not most days, can simply be filled by the quiet enjoyment of our family or our favorite part-times. But, this year and a half has taught me that there is great value in being purposeful and that the act, even the very decision to be diligently striving, brings lasting happiness when balanced with acts that are focused on those we love, or who we may not know well but who are nevertheless deserving (as I hope my donor family has found).

So, I hope that whatever your fight is that you will land some good punches this year and I hope that 2010 will be a great year for all!

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!