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.

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!

New Blog

Today Scott started his own blog in his own words. I love his first post and I look forward to more! Maybe now I'll start a blog about being a mom instead of an unpaid nurse. Here's the link.

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.

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.

2 Year Anniversary

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

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

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

HAPPY NEW HEART ANNIVERSARY SCOTT!

A relatively short hospital stay

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

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

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

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

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

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