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.
Wednesday, April 7, 2010
Tuesday, April 6, 2010
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??
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??
Tuesday, March 9, 2010
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.
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.
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!
Subscribe to:
Posts (Atom)