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.
Sunday, May 31, 2009
Thursday, May 21, 2009
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.
Friday, May 15, 2009
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!
Tuesday, May 12, 2009
Home
This is what I unloaded after a trip to the pharmacy.It happened. Scott came home! It is now almost 11:00pm and I haven't taken him back to the hospital. It is really true. He missed being in the hospital for 6 months by one day! Half a year!!! Now the second half begins. It isn't all easy. We have a busy schedule returning to the hospital for dialysis, biopsies, physio, bloodwork and clinic appointments. BUT Scott can come home every night. It was a little intimidating picking up the millions of pills and other medications from the pharmacy today. Noone will monitor if and when they get taken but us. It will take some organisation and effort to keep on top of it. It's scary because if we don't manage those things well it can be the difference between life and death. But we're ready! Upward and onward!
Sunday, May 10, 2009
Finally!
I've been a little cranky the last few days. It was so frustrating to wait for surgery for 4 days and Scott was only allowed to eat/drink for two 12-hour periods during that time. Again, today he fasted all last night and all day until about 4:30pm when he was finally taken to the O.R. It is finally done. The hernia repair was done with only local anesthetic and Scott was feeling fine but starving when I saw him at 9:30pm tonight. He can't feel anything yet and he was completely coherent and ate faster than I've ever seen him eat before! Hopefully he can come home tomorrow or the next day. We'll see what the transplant team says tomorrow. Maybe the end of the hospital stay is really here!? If they decide to keep him for 3 more days it will be exactly 6 months since he was admitted after his last hernia surgery. Wow, Scott could win a contest for the most scars in the most places I'll bet. If you think you could win I'm really sorry!!
Friday, May 8, 2009
Frustrated
I feel like we’re getting the runaround and conflicting information. Yesterday Scott was told he’d have surgery at 10:00am. He was then told it would be delayed. What we weren’t told is that Scott was on an “on-call” list and he would have the surgery IF they could fit him in. So Scott wasn’t allowed to eat or drink or leave because he was on the list. At 11:30pm they called him for surgery and shortly after cancelled the call. He was still on the list this morning and still wasn’t allowed to eat or drink – he’d also missed his scheduled dialysis yesterday just in case he got called. At noon today after fasting for 36 hours Scott finally saw a different surgeon with a different opinion. This one says he has 2 hernias and he willl need 2 months to recover enough to be able to do the peritoneal dialysis. The other surgeon said he could do it right away. Who do we believe? The first surgeon is now ‘out of town’. Scott was taken off the list for the rest of the day so he could eat, do dialysis and come home for the evening. He will be back on the list tomorrow – no eating again. If they don’t fit him in tomorrow they might schedule him in sometime next week. We are so frustrated because Scott could have come home last Tuesday and come back for this surgery. Instead he has sat around the hospital in limbo for the last week and it still continues. I’m really tired of the hospital and Scott is more so. It has been almost 6 months since Scott last slept in his own bed. We’re ready for him to come home.
Wednesday, May 6, 2009
Surgery Tomorrow
I kept waiting to update hoping to shout out that Scott is home for good. No such luck. We’ve been on quite an information ride this week. Last Friday, during the surgical insertion of the line for peritoneal dialysis the surgeon noticed 2 hernias that he said needed to be repaired “soon”. The frustrating part has been that the general surgeons are very busy and a hernia repair doesn’t get very prompt attention. I guess I’m used to life-threatening open heart surgeries that really get the surgeon’s attention and time. So Scott waited and waited in hospital for the surgeons to decide what “soon” meant. Should Scott stay in the hospital and get it done this week or should they discharge him from the hospital and do it at a later time??? We’ve been waiting for that answer since Friday. Scott had an ultrasound this morning to assess the hernia(s) and the doctor there said he doesn’t have any hernias!!! Every other doctor (cardiology, nephrology, endocrinology) and nurse(transplant, peritoneal dialysis), the pharmacist, and social worker all came by this morning and said “we’re waiting for the surgeons to decide what to do”. They have the only reason to keep Scott in the hospital. FRUSTRATING! Does he have a hernia or not? Can he go home or not? Come on surgeons. What’s up???
Finally, this afternoon THE surgeon came in (not the intern or med student) and said YES Scott does have one hernia and YES they will repair it tomorrow morning. Was that so hard?? At least we know the plan now. After this surgery I really hope Scott never has to see the inside of an Operating Room again!! Thank goodness this is a minor, routine surgery. If only Scott was a routine patientJ Hopefully it will take only the 30 minutes they expect and maybe Scott will come home in a few days!
Finally, this afternoon THE surgeon came in (not the intern or med student) and said YES Scott does have one hernia and YES they will repair it tomorrow morning. Was that so hard?? At least we know the plan now. After this surgery I really hope Scott never has to see the inside of an Operating Room again!! Thank goodness this is a minor, routine surgery. If only Scott was a routine patientJ Hopefully it will take only the 30 minutes they expect and maybe Scott will come home in a few days!
Friday, May 1, 2009
Dialysis School
We’re on to a new phase of this journey. Today Scott had the peritoneal dialysis line inserted. It was done surgically into his abdomen. He was sedated and given local anesthetic for the procedure. The best part about it is that they were able to drain 2L of fluid out of that area! When the peritoneal dialysis begins it will hopefully keep that area free of fluid build-up. This new line needs to heal for at least 2 weeks before it can be used. Then Scott and I will go to train with specialized nurses for a week learning to do the dialysis and how to troubleshoot any problems. I went to the clinic today to learn how to care for the catheter(line) until the dialysis begins with it. I received a good supply of masks, soap and other supplies to keep everything sterile.
The other news is that the transplant group has tentatively planned to discharge Scott on Tuesday. I’m cautiously optimistic about this. The surgeon today noticed that Scott has 2 hernias that need to be fixed “soon”. What does that mean? We’ll see if that affects the possibility of going home next week. I think he’ll probably still go home but have yet another issue to deal with sometime in the future. For now Scott is recovering from being sedated and a new incision but is doing well. He’ll probably come home for awhile tomorrow if he’s up to it.
The other news is that the transplant group has tentatively planned to discharge Scott on Tuesday. I’m cautiously optimistic about this. The surgeon today noticed that Scott has 2 hernias that need to be fixed “soon”. What does that mean? We’ll see if that affects the possibility of going home next week. I think he’ll probably still go home but have yet another issue to deal with sometime in the future. For now Scott is recovering from being sedated and a new incision but is doing well. He’ll probably come home for awhile tomorrow if he’s up to it.