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.
Tuesday, March 9, 2010
Friday, January 29, 2010
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!
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!
Monday, January 18, 2010
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!
Saturday, January 2, 2010
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!
Happy New Year Everyone!
What a year!
Wednesday, December 9, 2009
Christmas Shoes
Have you ever seen the movie "The Christmas Shoes"? I have. I'll never forget it.
Last year, during the entire holiday season - from a month before Christmas to a month after New Years Scott was waiting in the hospital on the heart transplant list. Every day I spent some time at the hospital, sometimes going back and forth more than once. The hardest times were when I had to leave Scott at the hosptial at about 9pm so that the babysitter could get home at a reasonable hour on a school night. I would come home to a quiet house with all the kids in bed. It was a very lonely time. I would often watch a little TV to keep my mind from going places I didn't want it to go.
One of these evenings I happened to turn the channel to a made for TV Christmas movie. I hadn't seen it before and it had already started. At first I didn't know the background of the characters but I quickly became interested. There was a young teacher/mother who was sick. I soon realised she had heart failure and was waiting for a heart transplant. I became fixated on this show as I was desperate to see a happy ending beacuse I was hoping to have my own any day.
I watched as this young woman got "the call" and her family had the excited, anxious experience of getting ready for a new heart at the hospital. Every night I would carefully put the phone beside my bed hoping that it would ring in with the news that there was a heart for Scott. In this movie, however, the call turned out to be a "dry run". That meant that something happened with the donor heart making the doctors choose not to use it. I felt so disappointed! I had been worrying about a dry run myself.
Now the wait continued for this woman and her family. She got sicker and sicker. I sat on my couch feeling devastated as this poor woman's husband and son brought her home to care for her during her last days. I sobbed and sobbed but could not turn it off. On Christmas Eve the young woman quietly passed away. Watching this was a small preview to my worst fears. I cried for a long time.
Thankfully my story had a different ending. "The call" came. It wasn't a dry run and it was, after a long difficult recovery, successful. My children and I still have our dad and husband. We didn't have to bring him home to live out his last days with us. After the feelings a fictional experience of losing someone produced I'm very grateful that I haven't experienced them yet. Hopefully it will be at least 30 or 40 years before that ever happens!
Please talk to your family! Tell them how much you love and appreciate them! We never know when our time is up. Take time to enjoy what you have now. If you have a chance to watch "The Christmas Shoes" make sure you have a box of Kleenex handy. You'll need it!
Last year, during the entire holiday season - from a month before Christmas to a month after New Years Scott was waiting in the hospital on the heart transplant list. Every day I spent some time at the hospital, sometimes going back and forth more than once. The hardest times were when I had to leave Scott at the hosptial at about 9pm so that the babysitter could get home at a reasonable hour on a school night. I would come home to a quiet house with all the kids in bed. It was a very lonely time. I would often watch a little TV to keep my mind from going places I didn't want it to go.
One of these evenings I happened to turn the channel to a made for TV Christmas movie. I hadn't seen it before and it had already started. At first I didn't know the background of the characters but I quickly became interested. There was a young teacher/mother who was sick. I soon realised she had heart failure and was waiting for a heart transplant. I became fixated on this show as I was desperate to see a happy ending beacuse I was hoping to have my own any day.
I watched as this young woman got "the call" and her family had the excited, anxious experience of getting ready for a new heart at the hospital. Every night I would carefully put the phone beside my bed hoping that it would ring in with the news that there was a heart for Scott. In this movie, however, the call turned out to be a "dry run". That meant that something happened with the donor heart making the doctors choose not to use it. I felt so disappointed! I had been worrying about a dry run myself.
Now the wait continued for this woman and her family. She got sicker and sicker. I sat on my couch feeling devastated as this poor woman's husband and son brought her home to care for her during her last days. I sobbed and sobbed but could not turn it off. On Christmas Eve the young woman quietly passed away. Watching this was a small preview to my worst fears. I cried for a long time.
Thankfully my story had a different ending. "The call" came. It wasn't a dry run and it was, after a long difficult recovery, successful. My children and I still have our dad and husband. We didn't have to bring him home to live out his last days with us. After the feelings a fictional experience of losing someone produced I'm very grateful that I haven't experienced them yet. Hopefully it will be at least 30 or 40 years before that ever happens!
Please talk to your family! Tell them how much you love and appreciate them! We never know when our time is up. Take time to enjoy what you have now. If you have a chance to watch "The Christmas Shoes" make sure you have a box of Kleenex handy. You'll need it!
Tuesday, November 24, 2009
Milestones
We have hit a few milestones recently. Scott has gone back to work part-time. That is a huge blessing for us. I like having Scott home but he needs something to do. He needs to contribute, be busy, and use his skills. I'm sure it won't be too long before he's back to full-time hours.
Scott is also going to his last supervised physiotherapy session next week. He has joined a gym and is working out regularly on his own. His muscles are getting stronger and his endurance is great!
Last week he had another biopsy that showed zero rejection. YAY!! He hasn't had a "zero" for many months now. He feels great. He now has the privileges of taking out the garbage, shoveling the snow, putting up the Christmas lights and doing small home repairs. It's not like he never did those things before but now it's quite easy for him so I don't feel guilty asking him to do them.
A few weeks after our youngest child was born 3 and half years ago our new neighbours were not impressed to see me mowing the lawn so soon after giving birth. It was a difficult task for Scott to do and I didn't mind so I did it. They did give poor Scott a hard time about it until they heard of his heart condition. Next spring will be a great change. I have a few yard projects in mind to keep Scott busy!
I've also been thinking back to last Christmas season. I spent many days and evenings at the hospital visiting Scott. Many family and friends took care of the kids during that time. We were completely spoiled with gifts - some anonymous - which added many smiles and laughter to that dark and difficult time. Someone wrapped all of my presents for me, friends drove my kids everywhere almost daily, and many other acts of love and kindness were received by us. I received many cards and emails of encouragement that supported me as well. Again I am feeling so overwhelmed with gratitude.
I am so happy and thankful right now! I know that it is through all of the love and prayers by so many that we have made it through this last year. Thank-you!
Scott is also going to his last supervised physiotherapy session next week. He has joined a gym and is working out regularly on his own. His muscles are getting stronger and his endurance is great!
Last week he had another biopsy that showed zero rejection. YAY!! He hasn't had a "zero" for many months now. He feels great. He now has the privileges of taking out the garbage, shoveling the snow, putting up the Christmas lights and doing small home repairs. It's not like he never did those things before but now it's quite easy for him so I don't feel guilty asking him to do them.
A few weeks after our youngest child was born 3 and half years ago our new neighbours were not impressed to see me mowing the lawn so soon after giving birth. It was a difficult task for Scott to do and I didn't mind so I did it. They did give poor Scott a hard time about it until they heard of his heart condition. Next spring will be a great change. I have a few yard projects in mind to keep Scott busy!
I've also been thinking back to last Christmas season. I spent many days and evenings at the hospital visiting Scott. Many family and friends took care of the kids during that time. We were completely spoiled with gifts - some anonymous - which added many smiles and laughter to that dark and difficult time. Someone wrapped all of my presents for me, friends drove my kids everywhere almost daily, and many other acts of love and kindness were received by us. I received many cards and emails of encouragement that supported me as well. Again I am feeling so overwhelmed with gratitude.
I am so happy and thankful right now! I know that it is through all of the love and prayers by so many that we have made it through this last year. Thank-you!
Monday, November 9, 2009
Happy Birthday Scott!
Today is Scott's birthday. We have so much to celebrate! Some people groan at the thought of birthdays and getting older but I think each year that we have on earth with our families is something to cheer about and be thankful for! I've never been more grateful for a birthday than this one for Scott. I really wasn't sure he would make it to 38 early this year.
Last year on Scott's birthday we had to be at the hospital early in the morning for Scott to have a hernia repair - minor surgery. It was a LONG day but he came home that evening. It was a pretty crappy birthday! For the next 3 days after the surgery Scott felt absolutely awful! He hardly moved. Finally, he was feeling so bad that he went to the emergency. We found out his kidneys were shutting down due to low cardiac output and he was put on very serious IV heart medication. That was day one of 6 months in the hospital! The hernia operation was "the apple that tipped the cart" for Scott's heart. So every birthday without a surgery is a good one now!
I think I'll always be grateful and happy for each birthday from now on. I only have to consider the alternative - NOT living another year.
HAPPY BIRTHDAY SCOTT! I'm so happy you're still here!
Last year on Scott's birthday we had to be at the hospital early in the morning for Scott to have a hernia repair - minor surgery. It was a LONG day but he came home that evening. It was a pretty crappy birthday! For the next 3 days after the surgery Scott felt absolutely awful! He hardly moved. Finally, he was feeling so bad that he went to the emergency. We found out his kidneys were shutting down due to low cardiac output and he was put on very serious IV heart medication. That was day one of 6 months in the hospital! The hernia operation was "the apple that tipped the cart" for Scott's heart. So every birthday without a surgery is a good one now!
I think I'll always be grateful and happy for each birthday from now on. I only have to consider the alternative - NOT living another year.
HAPPY BIRTHDAY SCOTT! I'm so happy you're still here!
Subscribe to:
Posts (Atom)