Another anniversary has again arrived. Five years since Scott's heart transplant!!! It continues to amaze me that modern medicine has given Scott another 5 years. In those five years he has lived to experience:
1. 5 more of each child's birthdays and 5 Christmases
2. Our 18th Anniversary
3. His eldest child get his driver's licence
4. Trips to Disneyland, Utah and Italy
5. A new home
6. Baptizing 1 child and ordaining 2 to the priesthood
7. 5 new nephews and one niece born
8. Two of his sons grow at least as tall as him(we measured yesterday)
9. 3 Fathers and kids camps
10. 1 preschool, 2 elementary and one junior high school graduation
There have also been countless hours of cuddles, stories, nerf-gun battles, walks, late night talks, music recitals, family movie nights, Sunday dinners, game nights and long talks in the car. Although there have been our share of struggles and trials to go along with the good times I am so thankful to have had Scott by my side for each of them. I look forward to hitting more milestones in the years to come.
Wednesday, January 29, 2014
Sunday, January 27, 2013
Happy New Heart Day
Today I looked at the calendar and realized that it is almost Scott's 4th anniversary with his new and wonderful heart. There are some dates of his 6 month hospital stay that are still very fresh in my mind. January 28 and 29, 2009 felt like one very long, very exciting and very terrible day.
The news came around suppertime on a Wednesday. We were told the news that there was finally a matching heart for Scott after waiting for 2 1/2 months in the hospital. He was getting sicker and time was running out. I remember where I was standing and what the weather was like that day. One of the happiest memories I have is pulling out of my driveway after saying goodbye to the kids. My oldest child, Ben, who was 11 was jumping up and down on the driveway in his socks in January! He was so excited that what we had been hoping and praying for was finally going to happen.
I met Scott at the hospital where the doctor discussed with us what was going to happen. Scott would be flown via air ambulance to Edmonton. I would drive the 3 hours there with my dad. The emotions of that time are still very present as I write this. Such excitement and nervousness all mixed together. The funny thing is that I didn't fear. I was sure this was the answer and everything would be fine.
Because it was 11:00pm when we arrived at the unfamiliar hospital we had to be let in by security. The hospital was still, quiet and dim as I attempted to find the unit where Scott would be. I had to ask a cleaning person where to go as it was not easy to find. I was relieved to finally be able to see Scott as they washed and prepped him for the operating room. We met a surgeon as Scott was wheeled down the hall to the OR. He told me that this surgery may take longer than normal because of Scott's individual complications. It could take up to 8 hours. Around 1:00am on Thursday, January 29, 2009 I kissed Scott goodbye and they took him away.
I really had no clue what was in store that day. I didn't know that it would be the absolute worst day of my life. I slept a little and paced a lot for those 8 hours. At 9:00 am I sat in a waiting area expecting at any minute to be told how the surgery had gone. I hadn't heard a word from anyone at the hospital. Thankfully I had my dad with me all night. My wonderful aunt came in the morning as well. I met a wonderful lady who was also waiting for her brother to have a double lung transplant. She hadn't heard anything either. I continued to keep positive and hopeful but then the hours stated to tick by with no news. Finally, around 2:00pm the surgeon spoke to us. I remember that little room. It feels like a movie to me now. All slow motion and all other sound stops. The new heart wasn't working. I can still see the surgeon showing me with his hand how the heart just wasn't squeezing as it should. I don't understand how a person's body deals with really bad news but I know that I felt numb and not really in myself. I didn't ask questions. I couldn't think. My body moved but I don't remember how. When we left the room I said I wanted to take a shower at my aunt's house. I couldn't really process what I had heard.
We left the hospital and I had that shower. That's when I let the news hit. I sobbed and sobbed as the water poured down. I only ever really fell apart when I was alone. That is always when it hurt the most. It felt the worst when I went to bed alone at night or drove home alone from the hospital. I was so close to losing my best friend and the father of my children.
The next 8-10 hours were really what made the day terrible. I really fell apart. The bad news kept coming. First bleeding. Lots of bleeding. They still hadn't let me see Scott since I'd left him at 1:00am. My hope was fading. My positive attitude was disintegrating. The hospital halls and waiting areas began to empty along with them. It was quiet and I had no answers. A hospital chaplain came to talk to me and left me feeling more desolate than I could ever have imagined. She was horrible. She was preparing me for the worst. I'm sure I was in a state of shock by then. I couldn't make my body do things. I could hardly hold my head up. At 11:00pm I still hadn't seen Scott. It had been 24 hours since I first arrived at the hospital. He had been moved to CvICU and was still extremely critical. Finally a nurse came and told my dad and I that we could see him. I was in a state where I couldn't even walk to his room. The nurse went and got a wheelchair and wheeled my to Scott's room.
My dad and I remember different things about that room. He remembers the machines and equipment that was on and around Scott. I remember Scott was white and cold and rigid. Looking back it seems I should've felt worse for seeing Scott in such a state. There were multiple nurses in the room doing all sorts of things including squeezing bags of blood so they would enter Scott's body faster. I didn't feel worse though. I felt such a relief to see him and know. I always do better when I know what I'm dealing with. My imagination makes the unknown much worse for me. Although Scott was still on the brink of death I felt some peace. In that busy room my dad was able to find his way around the tubes and wires and machines to place his hands on Scott's head and give him a blessing. He would be okay. And eventually he was.
I feel like even though I wasn't the one who had the heart transplant I still suffered a trauma. Talking about it and writing about it helps me to heal emotionally from that day. Four years later the emotions are not as raw as they once were. I think I have healed just as Scott has.
Thank you to those of you who still ask and comment on Scott's health. He really is doing fantastic. That day and all of the aftermath were a part of a journey to be who and where we are today. We are both better for it.
I am grateful for these last 4 years and I hope for 40 more!!
The news came around suppertime on a Wednesday. We were told the news that there was finally a matching heart for Scott after waiting for 2 1/2 months in the hospital. He was getting sicker and time was running out. I remember where I was standing and what the weather was like that day. One of the happiest memories I have is pulling out of my driveway after saying goodbye to the kids. My oldest child, Ben, who was 11 was jumping up and down on the driveway in his socks in January! He was so excited that what we had been hoping and praying for was finally going to happen.
I met Scott at the hospital where the doctor discussed with us what was going to happen. Scott would be flown via air ambulance to Edmonton. I would drive the 3 hours there with my dad. The emotions of that time are still very present as I write this. Such excitement and nervousness all mixed together. The funny thing is that I didn't fear. I was sure this was the answer and everything would be fine.
Because it was 11:00pm when we arrived at the unfamiliar hospital we had to be let in by security. The hospital was still, quiet and dim as I attempted to find the unit where Scott would be. I had to ask a cleaning person where to go as it was not easy to find. I was relieved to finally be able to see Scott as they washed and prepped him for the operating room. We met a surgeon as Scott was wheeled down the hall to the OR. He told me that this surgery may take longer than normal because of Scott's individual complications. It could take up to 8 hours. Around 1:00am on Thursday, January 29, 2009 I kissed Scott goodbye and they took him away.
I really had no clue what was in store that day. I didn't know that it would be the absolute worst day of my life. I slept a little and paced a lot for those 8 hours. At 9:00 am I sat in a waiting area expecting at any minute to be told how the surgery had gone. I hadn't heard a word from anyone at the hospital. Thankfully I had my dad with me all night. My wonderful aunt came in the morning as well. I met a wonderful lady who was also waiting for her brother to have a double lung transplant. She hadn't heard anything either. I continued to keep positive and hopeful but then the hours stated to tick by with no news. Finally, around 2:00pm the surgeon spoke to us. I remember that little room. It feels like a movie to me now. All slow motion and all other sound stops. The new heart wasn't working. I can still see the surgeon showing me with his hand how the heart just wasn't squeezing as it should. I don't understand how a person's body deals with really bad news but I know that I felt numb and not really in myself. I didn't ask questions. I couldn't think. My body moved but I don't remember how. When we left the room I said I wanted to take a shower at my aunt's house. I couldn't really process what I had heard.
We left the hospital and I had that shower. That's when I let the news hit. I sobbed and sobbed as the water poured down. I only ever really fell apart when I was alone. That is always when it hurt the most. It felt the worst when I went to bed alone at night or drove home alone from the hospital. I was so close to losing my best friend and the father of my children.
The next 8-10 hours were really what made the day terrible. I really fell apart. The bad news kept coming. First bleeding. Lots of bleeding. They still hadn't let me see Scott since I'd left him at 1:00am. My hope was fading. My positive attitude was disintegrating. The hospital halls and waiting areas began to empty along with them. It was quiet and I had no answers. A hospital chaplain came to talk to me and left me feeling more desolate than I could ever have imagined. She was horrible. She was preparing me for the worst. I'm sure I was in a state of shock by then. I couldn't make my body do things. I could hardly hold my head up. At 11:00pm I still hadn't seen Scott. It had been 24 hours since I first arrived at the hospital. He had been moved to CvICU and was still extremely critical. Finally a nurse came and told my dad and I that we could see him. I was in a state where I couldn't even walk to his room. The nurse went and got a wheelchair and wheeled my to Scott's room.
My dad and I remember different things about that room. He remembers the machines and equipment that was on and around Scott. I remember Scott was white and cold and rigid. Looking back it seems I should've felt worse for seeing Scott in such a state. There were multiple nurses in the room doing all sorts of things including squeezing bags of blood so they would enter Scott's body faster. I didn't feel worse though. I felt such a relief to see him and know. I always do better when I know what I'm dealing with. My imagination makes the unknown much worse for me. Although Scott was still on the brink of death I felt some peace. In that busy room my dad was able to find his way around the tubes and wires and machines to place his hands on Scott's head and give him a blessing. He would be okay. And eventually he was.
I feel like even though I wasn't the one who had the heart transplant I still suffered a trauma. Talking about it and writing about it helps me to heal emotionally from that day. Four years later the emotions are not as raw as they once were. I think I have healed just as Scott has.
Thank you to those of you who still ask and comment on Scott's health. He really is doing fantastic. That day and all of the aftermath were a part of a journey to be who and where we are today. We are both better for it.
I am grateful for these last 4 years and I hope for 40 more!!
Monday, November 12, 2012
Remembering
I am remembering today.
It is an anniversary of sorts.
Four years ago today Scott was admitted to the hospital. I had NO IDEA at the time that it would be
day one of a 6 month hospital stay. I
had NO IDEA that in 2 ½ months he would
have a heart transplant and come VERY close to death. I had NO IDEA how much I would depend on
others and on the Lord for help. I knew
it was bad but I really didn’t know what was in store for our family.
I still have guilt about that day. Scott had a hernia surgery 3 days
before. Although it was just a day
procedure we knew he had increased risks because of his heart failure. We didn’t know that the stress of the
surgery had dramatically decreased his heart function and his other organs were
starting to shut down. I could tell
Scott didn’t feel well. He did just have
surgery! In my defense, he hadn’t felt
well for a long time either.
The guilt comes from my treatment of him that day. I was impatient and annoyed. I was busy caring for our four children and
I felt like I had one more needy, grown-up to care for too. I had a church meeting to attend that
evening and I got everything ready so he could be ‘in charge’ of the the kids
while I was gone without having to do much at all. I was in a hurry to go out the door when
Scott asked me in a pathetic voice to get him a drink from the fridge. I remember grumbling to myself ‘He can’t
even get his own drink!? I’ve been
doing everything today and I’m in a hurry.’
I did get him that drink and rolled my eyes on my way out.
I am ashamed to say that I even complained to some friends
about Scott’s neediness when they asked me how I was. I was not compassionate at all.
Can you imagine how I felt when I came home and found my
brother there caring for the kids! Scott
had called my parent’s home and told them he needed to go to the hospital. My dad was at the ER with him. I hurried to the hospital where we found
that his kidneys were failing due to lack of blood flow. We met with the cardiac transplant team the
next morning and started the process of getting a new heart.
I can only now share this story because I have a little
perspective now. I still feel guilty for
my bad attitude but I think I learned to be more compassionate because of the
experience. I hope I am more patient
and less judgemental too. I don’t know
how it feels to be chronically ill. I
don’t know how it feels to have a failing heart. I don’t know how it feels to be stuck in a
hospital room day after day and be poked and hooked up to stuff and woken up in
the middle of the night to take my blood pressure. I’m glad I don’t know but I hope I can be compassionate
to those who have to go through tough times.
If you are reading this make sure you let your loved ones
know that you love them. Be a little
more patient. Be a little less
judgmental. Show a little more compassion. You don’t know what tomorrow may bring.
Friday, February 3, 2012
Three Years!!!
I have no good excuses for not updating this blog. No news is good news. The good news is that Scott has been feeling steadily better for a year now! A few days ago we celebrated his 3-year anniversary with a new heart.
At the very beginning of 2011 Scott's main immunosuppressant was changed from Sirolimus back to his original Tacrolimus. Who knew what a differnce that would make?! After he switched to Sirolimus in early 2010 because of the BK virus, he started having digestive issues, lost 30 lbs that he didn't have to spare and felt generally fatigued and blah. I have to admit that it was a bad time. He cut back on work, was kind of cranky and didn't feel up to much. It was way better than not living, slightly better than heart failure but significantly worse than he feels now.
Each month of 2011 Scott felt a little better. The digestive issues resolved and his energy increased. He gradually added hours to his work week, he joined a gym and he started to have a spring in his step. I cannot believe the difference! He finally knows how it feels to be well. He comes home from the gym surprised and excited about how many laps he ran, how much weight he lifted and how much energy he has left after a workout. I wish I had the motivation he does! The contrast between well and not well is very obvious to me now. It's hard to smile and have a good attitude when you don't feel well. It takes a lot more effort than when you feel good. Now that Scott feels good, he is happier. The chain reaction is that I am now happier, our kids are happier and life is better.
THAT is the way a heart transplant is supposed to work. We met a few people with heart transplants while we waited on the wait list. They all seemed so normal and healthy. There was a time when Scott had been in the ICU for weeks that I felt frustrated. I felt that the only heart transplant experiences we had heard of were so much easier than what we went through. I watched others receive transplants and come and go while Scott had many setbacks and struggled to make tiny improvements. Truthfully I wondered if it would ever be worth it. I felt that life was just not fair. Why did he have to be in the ICU for almost 7 weeks after his transplant? Why did his kidneys have to fail? Why did his new heart not work right away? Why did he get the BK virus and cellulitis and Colitis??? I still don't have the answers to those questions but it just doesn't seem to matter now that those issues have passed.
The fact that someone elses' heart beats inside him will always be a part of our lives. He will always be immunosuppressed. However, sometimes I forget for days that Scott had a heart transplant. Health issues do not permeate every aspect of our lives anymore. Thankfully Scott remembers at least twice a day to take his medications. He also remembers when he can feel blood pulsing in his fingertips after exercise or he can walk briskly without getting out of breath because of the young, healthy heart he has been so blessed to receive. He is no longer fragile. He is strong. He is happy. I am happy.
We travelled to Italy in September. This is us in Milan on our last day. It was all worth it!
At the very beginning of 2011 Scott's main immunosuppressant was changed from Sirolimus back to his original Tacrolimus. Who knew what a differnce that would make?! After he switched to Sirolimus in early 2010 because of the BK virus, he started having digestive issues, lost 30 lbs that he didn't have to spare and felt generally fatigued and blah. I have to admit that it was a bad time. He cut back on work, was kind of cranky and didn't feel up to much. It was way better than not living, slightly better than heart failure but significantly worse than he feels now.
Each month of 2011 Scott felt a little better. The digestive issues resolved and his energy increased. He gradually added hours to his work week, he joined a gym and he started to have a spring in his step. I cannot believe the difference! He finally knows how it feels to be well. He comes home from the gym surprised and excited about how many laps he ran, how much weight he lifted and how much energy he has left after a workout. I wish I had the motivation he does! The contrast between well and not well is very obvious to me now. It's hard to smile and have a good attitude when you don't feel well. It takes a lot more effort than when you feel good. Now that Scott feels good, he is happier. The chain reaction is that I am now happier, our kids are happier and life is better.
THAT is the way a heart transplant is supposed to work. We met a few people with heart transplants while we waited on the wait list. They all seemed so normal and healthy. There was a time when Scott had been in the ICU for weeks that I felt frustrated. I felt that the only heart transplant experiences we had heard of were so much easier than what we went through. I watched others receive transplants and come and go while Scott had many setbacks and struggled to make tiny improvements. Truthfully I wondered if it would ever be worth it. I felt that life was just not fair. Why did he have to be in the ICU for almost 7 weeks after his transplant? Why did his kidneys have to fail? Why did his new heart not work right away? Why did he get the BK virus and cellulitis and Colitis??? I still don't have the answers to those questions but it just doesn't seem to matter now that those issues have passed.
The fact that someone elses' heart beats inside him will always be a part of our lives. He will always be immunosuppressed. However, sometimes I forget for days that Scott had a heart transplant. Health issues do not permeate every aspect of our lives anymore. Thankfully Scott remembers at least twice a day to take his medications. He also remembers when he can feel blood pulsing in his fingertips after exercise or he can walk briskly without getting out of breath because of the young, healthy heart he has been so blessed to receive. He is no longer fragile. He is strong. He is happy. I am happy.
We travelled to Italy in September. This is us in Milan on our last day. It was all worth it!
Saturday, July 9, 2011
Sunday, June 26, 2011
Life is Good
I have been lacking in the post department lately. It’s really nice to be enjoying life without medical issues getting in the way. The last few months have been great! Scott is feeling better than he has in a very long time! He is not suffering with any infections, colitis, kidney problems or heart failure right now. He still has energy after work and on the weekends to go out, clean the garage, hike, bikeride, drive kids around to activities and enjoy life. What a marvelous change! I have the new experience of occasionally wondering if I can keep up to him. He has been going to the gym regularly and building up strength and endurance. He has increased his work hours and is using public transportation. He is noticeably happier and so is the rest of the family.
I guess that’s why I haven’t posted lately. I just feel like I’m bragging! It has taken over 2 years but Scott is finally enjoying the full benefits of having a new heart! I have always been grateful that he survived his transplant even with all of the difficult times that came after. However, I am SO HAPPY that he now feels great!!! There were many times when I wondered if he would always feel unwell in one way or another.
We have many plans for the next few months. We want to enjoy the mountains. We are going to attend a family reunion and we have a trip booked to Italy! Can you believe it!? I am really excited. It will feel like a trip to celebrate how good life is. Life IS good.
I guess that’s why I haven’t posted lately. I just feel like I’m bragging! It has taken over 2 years but Scott is finally enjoying the full benefits of having a new heart! I have always been grateful that he survived his transplant even with all of the difficult times that came after. However, I am SO HAPPY that he now feels great!!! There were many times when I wondered if he would always feel unwell in one way or another.
We have many plans for the next few months. We want to enjoy the mountains. We are going to attend a family reunion and we have a trip booked to Italy! Can you believe it!? I am really excited. It will feel like a trip to celebrate how good life is. Life IS good.
Tuesday, April 26, 2011
Antibiotics and Bikerides
Last week we felt like a normal family. On Good Friday we went for a family bikeride. On Saturday we went for a little hike like normal families do. The new and exciting part was that Daddy came too. He didn't sit and watch or stay at home. He rode his new bike and kept up with the rest of us. At some point during those two days I said to Scott "I should be taking pictures and posting on the blog about how good life is. It's time to have a nice, positive post." Sometimes, when you get complacent, life decides to throw you a curveball. I guess I jinxed it.
Saturday night Scott spiked a fever. BOO!! He spent much of Easter Sunday in the ER or layed up on the couch. We knew that an infection in his leg was flaring up. He had the same infection over a month ago and it took a few weeks of antibiotics to overcome. We now know that he is prone to leg infections as this is the 5th one in the last year. After a second and third trip to the ER Scott is now on home IV antibiotics with tubes and a fanny pack of medicine. He has an extremely sore cellulitis in his leg and is limping or sitting with his leg elevated. So much for bikeriding and hiking.
The other problem with this turn of events is that I developed strep throat at about the same time Scott's infection began. This Easter weekend began so wonderfully and ended so badly. I feel like I should quietly enjoy the good times and not make any comments about how good things are so that irony can't turn around and kick my butt!
I do know one thing - I AM SO GRATEFUL FOR ANTIBIOTICS!!! They continue to save Scott's life. They have also almost cured my excrutiatingly sore throat. YAY FOR ANTIBIOTICS!! Hopefully we'll have more family bikerides and hikes before too long. Next time I'll keep my thoughts about blog posts to myself.
Saturday night Scott spiked a fever. BOO!! He spent much of Easter Sunday in the ER or layed up on the couch. We knew that an infection in his leg was flaring up. He had the same infection over a month ago and it took a few weeks of antibiotics to overcome. We now know that he is prone to leg infections as this is the 5th one in the last year. After a second and third trip to the ER Scott is now on home IV antibiotics with tubes and a fanny pack of medicine. He has an extremely sore cellulitis in his leg and is limping or sitting with his leg elevated. So much for bikeriding and hiking.
The other problem with this turn of events is that I developed strep throat at about the same time Scott's infection began. This Easter weekend began so wonderfully and ended so badly. I feel like I should quietly enjoy the good times and not make any comments about how good things are so that irony can't turn around and kick my butt!
I do know one thing - I AM SO GRATEFUL FOR ANTIBIOTICS!!! They continue to save Scott's life. They have also almost cured my excrutiatingly sore throat. YAY FOR ANTIBIOTICS!! Hopefully we'll have more family bikerides and hikes before too long. Next time I'll keep my thoughts about blog posts to myself.
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