BIG NEWS!

Big news! We met with the nephrologist yesterday and she was very pleased with how Scott is doing from a kidney perspective. Scott is now in the “recovery phase” with regards to kidney function. I wasn’t sure this day would ever come! The doctor said that he doesn’t need dialysis right now and she’d see him in a month. His kidneys are functioning at 25-30% right now and they’re hopefully still improving. It’s only when kidneys work less than 10-15% that dialysis is needed. She did say Scott’s kidneys will never be 100% but that’s okay. The reason people can donate a kidney is that kidneys are capable of doing a lot more work than a body needs.

What an answer to prayer this is! I feel very overwhelmed knowing that so many have prayed and fasted specifically for this blessing. This is also the fulfillment of priesthood blessings. This feels almost as big as the news that there was a heart available. I am very grateful and humbled to be so blessed!

Cautiously Optimistic

Scott came home overnight on the weekend on a pass. When he is discharged he’ll be set up to get his antibiotics through the picc line with a timed pump. He won’t need a nurse to administer it every 4 hours. It really helped to get out for awhile. Hopefully he’ll be home again in a day or two.
Today Scott went into the OR again. They repositioned his Peritoneal Dialysis catheter. They didn’t have to completely replace it but they still had to go in surgically. He’ll be pretty sore tomorrow again.
Good news though. I’m trying to be cautiously optimistic but it’s hard to keep my hopes at bay. So many have been praying for months that Scott’s kidneys will recover. He’s been on dialysis for over 4 months now. Because he has had no way to do dialysis for the last 10 days he hasn’t had it. BUT…. his kidneys are starting to do some work! There certainly isn’t a full recovery but the signs are good. His frequent blood work is looking good. He is retaining a lot of fluid but his toxin levels are acceptable and not rising so far. Today he started diuretics to get rid of some fluid and they are working too. He is doing so much better than the last time he went 10 days without dialysis in March. The doctors certainly won’t say whether or not he’ll continue to need dialysis yet but they are happy with the current trend. SO AM I!!!!! I just pray that it continues.
Thank-you for all of your kind deeds, words, thoughts and prayers! It really makes a difference to us.

Did I say it was getting easier?? oops

Still in the hospital. There are a few reasons but Scott feels fine. The antibiotics have been working and he has no symptoms of an infection now. It was confirmed that he had a staph infection on his dialysis line and it progressed to a full-blown blood infection, or sepsis. His cardiologist told him(when he was past the worst) that it was the kind of infection that “could do a person in”. So we’re lucky and grateful we caught it in time. Scott was close to being admitted to the ICU – not the CICU – worse. Thankfully it didn’t get quite that bad.
Scott has been receiving IV antibiotics and will be for the next 3 weeks. He only stayed in the CICU for one day then he was moved to unit 81 – the same room as before. They plan on putting a picc line in his arm again so he can go home on the meds. BUT the big issue is dialysis. Now he can’t have hemodialysis because they took out the catheter for access. Because he already has a PD catheter line that was put in surgically over a month ago they were just going to start PD dialysis Tuesday night. When they tried to use the PD line it didn’t work properly. They took an xray and it isn’t in the right spot. Now surgery gets involved again to make it work. But that means wait and wait and wait. So Scott feels fine and wants to come home but instead he sits in a dreary hospital room on a beautiful, sunny day waiting for a surgery that could take days to happen again. This really stinks! I try to tell myself to be grateful because it could be so much worse but it still isn’t easy.

Back in Hospital

I know I said on my last post that I wouldn't update for awhile. But when things get hard it helps me to do the updates. Yesterday(Sunday) Scott took his temperature like he does every morning. It was definately a fever at 39.2 degrees Celcius. After calling the transplant team they said to wait and see if it got better by the evening. Unfortunatley it didn't and the chills started. So they told us to go into Emergency. It was a short wait in the waiting area when the doctor calls to say you are coming. After getting a bed in the ER they did a bunch of blood work and hooked Scott up to everything (blood pressure cuff, heart monitor, IV etc.) His fever kept rising. At one point it was 41.7!!!! They told us they were going to admit him for an infection. He had a rough night with blood pressure dropping and a high heart rate, body-shaking chills and a consult with the ICU doctors. In the morning they took out the dialysis line from his neck. It looks like that was probably the source of the infection. We won't know for sure until the results come back from the tests on it.
After a night and a morning in an ER bed Scott was finally admitted to the CICU. Back to that place again. His fever is getting better but he's just plain wore out from fighting this big infection. Hopefully it's a good night tonight and the antibiotics do their job. I'm praying for a short hospital stay!

Good is fine with me

I’ve been wondering whether or not to continue my public updates on our day to day accomplishments and struggles. I don’t mind sharing but Scott is more private than I am and doesn’t always want all of his personal health details ‘out there’ for anyone to see. It started as a way for me to answer the questions everyone was asking in a format that allowed me to spend less time on the phone and explaining the same things over and over. It turned into much more for me. It became a way to feel connected with others, share my story(Scott’s story really) , document an important series of events, and feel support from many people near and far. If it was only my story I would continue to blab away but it isn’t just me. I think Scott just wants to move on, not dwell on the past and be that ‘normal’ person he has always desired to be. He is getting tired of talking about health stuff. So this will be my last health update for a time.
So “How is Scott doing?” He would say ‘good’. It is true. As I often reflect on the past year and especially the past 4 months since his heart transplant it has been such an amazing journey! The roller coaster has leveled off dramatically and we’re coasting along nicely. There are still bumps and wobbles but the extreme ups and downs seem to be behind us. I know I sound like a broken record but I really would like those kidneys to shape up! It’s also a different life living immunosuppressed. When an immune system is deliberately held back from fighting off everyday germs, those everyday germs become a big issue! We are handwashing maniacs! Don’t be offended if you shake Scott’s hand and you soon see him pull out the hand sanitizer! It’s not just you.
Scott had a heart biopsy 2 weeks ago. It was the first that showed any sign of rejection at all. He was at a level 1 out of 4(4 being the worst). The transplant team is not worried at all about a 1. They have lowered Scott’s immunosuppressant medication so he can fight an infection he’s been slowly developing. It is such a balancing act! He has another biopsy this Friday. I hope it is still good. Scott keeps getting stronger – again slowly but surely. There are many pounds of muscle to rebuild. But it is coming.
So things are good. Not fantastic, not terrible, but good. And good is fine with me.

Getting back to normal

I guess I haven't added to this for awhile. The truth is, no news is good news. Life is getting back to normal. Routines are being established and re-established. I'm much more relaxed without going back and forth from the hospital every day. I haven't had a conversation with a doctor in 10 days and I like it. There are still health issues that are ongoing. Scott's medications are always interesting. Blood work is being done weekly and changes to meds are made accordingly. Scott is still building up strength. He has an enormous appetite and good energy. We're just waiting for his muscles to catch up to his heart. It would also be really nice if his kidneys started to pull their weight but so far they're pretty lazy. We are scheduled for training on peritoneal dialysis near the end of June. The incision from the hernia surgery is still a big question mark complicating the new dialysis plan. It's nice to not have any big worries and concerns but it still takes patience to wait for the little things that just take time. I can be patient! At least we have a time together to work this all out. That's all I really wanted. Whenever I think things are taking too long I just have to remember the first few days after Scott's transplant. All I wanted at that time was the chance to be with Scott longer. Every day we have together is a blessing.

Our ward came together today to celebrate Scott getting out of the hospital with an ice-cream party in our backyard tonight! It was so wonderful to have so many of the people that have supported us in so many ways gather together with us. It was a time filled with sticky faces, kids everywhere, visiting with friends, laughing and just enjoying being together. Thanks to those who also worked organising, setting up and scooping! We really are blessed to have such great friends and family! I only took pictures at the beginning because my camera batteries died early on. I'm sorry I didn't get more pictures of all of the people that came to support us.

Today was a busy medical day. Scott had an echocardiogram this morning at 7:45am followed by bloodwork and a heart catheterization/biopsy. These were done to determine pressures in Scott's heart so some of his medications could be reassessed. We didn't leave the hospital until 3:30pm. The good news is Scott's pressures were normal!