Letters to the Donor Family

I've been wanting to blog about a delicate subject: The person and their family who donated so that Scott could have his new heart. I've been reading about other transplant recipient's experiences and I want to share a little about our experience. I want to respect the donor family's privacy by not putting details out publicly but I also want to share what a wonderful experience it has been to communicate.

We have received 3 letters from the donor's mother. I have written 2 letters, Scott has written a letter and the kids have sent notes and pictures. The H.O.P.E. program facilites the exchanges so we don't send or receive things directly.

It is very humbling to hear from this mother who still feels such pain and loss. It is sometimes difficult to know that our extremely positive event came from someone's VERY negative event.

We know that the donor was a young woman. Her mother has shared with us some of her good qualities. We know she loved children, she had a good relationship with her family and was very loved. She was strong and healthy before a sudden, tragic event.

I do know that writing to this family has been positive on both sides. I'm very sorry that this family has experienced so much pain and suffering. We feel connected to someone we don't even know. It has been reconfirmed to us that there are good, kind people out there who give without receiving anything in return - just because they know it will help someone. The donor's mother has told us that the knowledge of her daughter's gift helping our family has brought her "joyful tears" and smiles. She said that our letters have meant a lot to their family and knowing the difference their gift has made does help them.

I'm grateful for the opportunity to communicate with this family. I'm grateful for the letters we've shared. Sometimes I would like to look them in the eye, give them a hug and let them see with their own eyes our family and the difference their gift has made. The laws here don't allow for that so I can be satisfied with the letters.

I hope anyone reading this post will think about organ donation and choose to talk to their family members about their wishes. Organ donation saves lives and families. It has saved ours.

Ups and Downs

The last 3 days have been quite eventful. I know I haven't updated in a long time. That is because things have been going quite well. We met with the nephrologist this week and she said Scott is doing great and she doesn't need to see him at all anymore!! Then Scott had a biopsy and clinic appointment with the transplant team. We discussed Scott going back to work as early as next week part-time! We also discussed Scott finally getting off the prednisone(a steroid) after 8 months. He started with at least 50mg/day and was down to 2.5mg/day. If the biopsy results were good they told us he could go down to ZERO!!!! It was a good appointment.

The next day we took a trip to Edmonton. We haven't been there since Scott was transfered back to Calgary over 6 months ago. At that time Scott was barely taking a few steps with a lot of help. He was bloated from his kidney failure. He was still suffering from sleep deprivation and hallucinations. His legs looked like a Halocaust surviver's. His hair had fallen out in places and he stilll had a lot of tubes. In other words he looked pretty bad.

We had the opportunity to see the surgeon, the Berlin Heart doctor, the transplant coordinator, a transplant cardiologist and some of the CvICU staff. They all said they wouldn't have recognized Scott on the street. Thank goodness!! He is a normal, walking, pink, non-bloated regular-hair guy now. It was a great experience to see their smiles and let them know that we appreciate their hard work in keeping Scott alive - because it was hard work!!! We also had a tour of the new units in the new Mazankowski Heart Institute. The new CvICU was SOOO much nicer than the old one. Individual rooms, windows, healing gardens... Oh well, I guess I'm glad we didn't wait an extra 6 months to be able to benefit from the new building.

After that good experience we were able to visit with some family, enjoy time together and attend the temple for the first time together in over a year! We were having a great trip. Then came the bad news. We received the phone call. Biopsy results. Rejection! Not the worst - a 2R. A 3R would be worse. But the dream of ending the prednisone is dashed! Now Scott must take 100mg of prednisone for the next few days then he gets to start the weaning process all over again. We were at 2.5mg!!!! Now the side affects again. Swollen face, pimples, mood swings, bone loss, high blood sugar, etc. etc... I think the weaning process is quicker this time - at least that's what I hope. Now I'm not sure about going back to work. I'm not sure what all of this means. When you get biopsy results late Friday afternoon we just start the new drug regimen and wait until next week for many answers. I do know another biopsy will be scheduled in 3 weeks. Hopefully the rejection is thwarted by the nasty prednisone and life can get back to normal again. But for now the roller coaster continues...

Home again:)

Scott is home again after 6 days in hospital. He is not tube-free anymore:( He now has a drainage tube attached to his leg to drain the hernia site so it can't accumulate fluid and get infected again. Hopefully he'll get it taken out in a few weeks. He also has a picc line which is always attached to an IV bag of antibiotics and a pump. It gives him a dose every 4 hours for a month! We REALLY don't want this infection to survive this time!
Gratefully Scott does still feel good. The docs continue to make changes to his meds and another biopsy is scheduled for next week. This time he will get it done the easier way! YAHOO! We won't have to spend 8 hours in hospital for each biopsy anymore. THAT is good news!
Yesterday was the 1st anniversary of my grandpa's death. We visited the cemetery. It struck me how close it came to Scott being there. I felt overwhelming gratitude as I stood there thinking how hard it would be to only visit Scott in a cemetery. I held him close.
Today is our 14th wedding anniversary! I've really been introspective and reflective these 2 days thinking back on this last year. When I feel discouraged because Scott's recovery isn't progressing as quickly as I'd like I only need to read back on my entries from early in the year. The wait for a heart ended, the ICU experience ended, and the hospital stay ended. We are still going in the right direction. I'm thankful to have made it this far! Each day is a gift. I appreciate each one. Fourteen years is really an accomplishment!!!

Not Again!

Another bump in the road this week! The night before we came home from Utah Scott woke up in the night with chills and a fever. Fevers are a big deal when you are immunosuppressed. After talking with the transplant team we decided Scott should fly home. We bought him a ticket and away he went. I still had the 14 hour drive with 4 kids to do so Scott's parents helped out and did it with me(in 2 cars).
When Scott got home he felt pretty awful so he had my dad take him to the emergency. They did a whole bunch of tests but didn't find any source of infection - maybe just a virus. So Scott continued with the fever, chills, lethargy and no appetite for another day. Then I came home. The next morning, Wednesday, he had a clinic appointment with the tranplant team. That same morning he noticed swelling and redness around the site of his hernia repair that was done in May. When his doctor saw it he told Scott to go to emerg again. So away we went. We met with the general surgeons again and they waited for an ultrasound and bloodwork and every hour there was a new plan. Surgery, no surgery, infected fluid, not infected fluid...

Finally they drained the fluid with a needle, put Scott on IV antibiotics and sent us home. We did need to come back at midnight for another dose and back again in the morning for Infectious Disease doctors to decide the type and duration of antibiotic treatment. That was a long day!

But Scott continued to have a low-grade fever. The next night he had a high fever again. We also got a call from an ER doctor that his blood cultures from 2 days before had come back positive for a blood infection - staph again. Back to the ER again. Gratefully Scott was feeling better by the morning and was admitted to the hospital and feeling pretty good. The infected area was filling with fluid again so Scott had a CT scan and radiology drained it again and left a drain in this time.

Now we wait and see how Scott heals. Then he can come home. Hopefully this is a short hospital stay. Considering Scott's last infection that put him into septic shock this really hasn't been too bad!

Rainy Day

Sometimes rainy days are nice. It gives me the chance to stay inside and blog, right! We've been in Utah for 12 days now and it has been mostly HOT -usual August weather here. It really has been a vacation. We've had a lot of fun with family, met new family members, met old friends and new friends. Thankfully we've had 2 weeks to get everything in. I am feeling ready to go home now though. Back to reality. School starts in 2 weeks and I really should make the kids get up before 9am. Otherwise it will be a rude awakening on the first day!
I guess I should update on Scott. It has been over 6 months since his transplant now. We are used to the medications and procedures. The day after we arrive home Scott has 3 medical appointments to catch up after 2 weeks off. The fact that we left the country is pretty amazing! Scott even went in a pool a few times. That is the advantage of being tube free. He still looks forward to being more limber and having fewer aches and pains. I think that will just take time. We're not sure when he will be ready to go back to work but it is now on the radar. He looks forward to going back. That is the next big step forward.

TUBE FREE - FINALLY!!

It is true! Scott is completely tube free! His peritoneal dialysis catheter was removed today. He has no medical paraphernalia attached, implanted, tunneled, inserted or hooked up to him. That is a first in almost 9 months. Now he can have a shower for the first time in months. He doesn’t have to use any saran wrap in the shower either(to keep paraphernalia dry).

The appointment with the nephrologist went great! She said that Scott’s kidneys have been working 35-45% over the last month and they may continue to improve. We may not need her services any more. Can you believe that!?!? I am still amazed!

Because of Scott’s kidney improvement, his anti-rejection medication levels have not been very consistent. They keep changing his doses and therefore need to biopsy more often.

The biopsy for Scott is a huge pain!! Most heart transplant patients have a biopsy done through a vein in the neck. They use minimal local anesthetic and it takes about half an hour to go in and get microscopic pieces of heart tissue. It is done in the echocardiogram lab at the hospital. Scott however has unusual anatomy and veins. Due to that and other issues Scott has to have his biopsies done through the groin. Because this is a more complicated procedure he needs more anesthetic and it needs to be done in an operating room settting called the catheterization lab. He also has to lay flat for at least 2 hours after the procedure. Then he can walk around for an hour. Then they take out his IV, give us a speech about how to care for the site, and give us the spiel about the possibility of fatal bleeding. Nice. The entire process always takes about 6 hours. Not fun!

Scott is scheduled for another biopsy on Monday. He has had them every 3-5 weeks for months. The last 4 have been 1R – very mild rejection. I keep hoping for some zeros. Maybe then they can increase the time between biopsies. I guess I should be grateful that the worst thing now is biopsies. I am. But I can still hope for fewer of them, right!?

Gratitude

Life is good! Maybe even great. The promised changes are happening. Sometimes it still stops me in my tracks – Scott has a new heart!!! This heart is healthy. I sometimes think back – especially to the year before his transplant. I always knew Scott had a heart problem but it never seemed like a big deal to me. He was just Scott. His slowing down physically was quite gradual to me. We just got used to it. Scott complained very little. He just kept on trucking. We got used to the fact that he just moved slower than most and needed frequent rests. Now I know that Scott was experiencing heart failure – his heart wasn’t providing adequately for his body. It now makes sense to me why he had such a terrible time in Las Vegas last summer. Did you ever notice as you walk around the hotels that the only place there is to sit is at gambling stations?! So when we walked around as a family Scott would become VERY tired and want to sit down. We don’t gamble and we had our kids with us so Scott wasn’t allowed to sit in any of the thousands of available chairs while walking through the enormous casinos!! He never wants to go to Vegas again!

We were able to go on a vacation already this summer. We attended the Hornberger Family Reunion in Summerland, B.C. We had a wonderful time! We had been preparing to attend while Scott was doing dialysis and we were trying to figure out how he could do dialysis there. I am so grateful that his kidneys have recovered enough that we didn’t need to transport dialysis equipment on our trip or spend time doing dialysis there! The human body really is amazing!

Scott only has one tube left in his body. He still has the peritoneal dialysis line in his abdomen. He couldn’t go in the water on our trip which was a bummer and he still can’t shower. On Monday we meet with the nephrologist again. Scott’s dream is that she will recommend removing that line. Last time we met with her she said that was a possibility. Then Scott will be totally TUBE FREE!!!! No picc line, no dialysis lines, no oxygen, no dopamine, no IVs, no chest tubes…NOTHING. Nothing to clean, maintain or possibly cause infections! I can hardly wait.

It has almost been 6 months since the transplant. One year ago I had absolutely no idea what was in store for our family. I have learned so much. I have never felt so afraid and overwhelmed as I have this year BUT I also have never felt so loved and supported. It still isn’t always easy. Scott will always have many, many medications to take and bloodwork to be drawn and biopsies and clinic appointments. He will have to be very aware of his own body and health. But it is such a small price to pay for this new opportunity.

Just one more note as I am just going on and on. I often think of the family of the person from whom Scott’s new heart came. They must still feel such pain and loss. Six months is not much time to ease the pain of loss. Yet in a time of deep anguish they chose to give us such a gift! Again I am overwhelmed with gratitude. The blessings in my life are so tremendous and numerous that I can’t begin to number them. Just know that my gratitude runs deep.