That's the good!
Unfortunately, even after 13 months of recovery and working hard at rehab, I am not fully recovered from the transplant. I keep getting told not to forget what kind of surgery I endured and how long I was unable to move around and needed a wheelchair, which de-conditioned me so much that I could not stand unassisted. So rehabbing from that level of de-conditioning isn't going to come easy or quick. It's frustrating but I am determined to keep at it and keep trying. I am working with a trainer who put together a training plan for me that I hope will help me regain my strength and help with my breathing. I still can't climb the stairs to my bedroom without falling to my knees at the top and huffing and puffing to catch my breath. I want better. I'm impatient I know. The same was true of my baking for Christmas. On just one of the days I baked, I was on my feet for 5 1/2 hours straight plus bending over to decorate the cookies. My back was killing me when I was done and I needed a two hour nap afterwards. Even when I come home from working out with the trainer, I am exhausted and need a nap. Yet I still have no trouble sleeping at night even after a 2 hour nap. I am determined to work to get stronger and healthier. But in the meantime, it's HARD work to do so many things still.
That's the "bad".
Then there are all the side effects from the medications I have to take to prevent rejection along with other things. We were warned before transplant, but all these meds wreak havoc with our emotional stability so it's like being on an emotional rollercoaster. Well, I'm on it and I can't get off and it doesn't take much for the ugly cry to show up. I've also been very frustrated with communication issues with the transplant team regarding various issues. I am working this out, but it's been challenging enough to deal with everything being a transplant patient means, adding other outside frustrations doesn't help.
That's the "ugly"
But ultimately, I am doing well. Better than I think anyone thought I would be doing and for that I am blessed and grateful. Often people think we get our transplant and if you're lucky enough to do well and get discharged and you look so much better, people think that's it. I'm fine. Unfortunately that's not the case. While I am doing well, there is always something to deal with. Side effects of medication is a constant. Dealing with kidney function problems that require IV Saline Infusions for 3 hours 3 days in a row; having a white blood count so low I needed medication injections in my stomach three days in a row. Being so immunosuppressed that I have had to deal with multiple infections and viruses, fevers and the like. It's not easy. But it beats the alternative.
So I am so grateful this Christmas season and am savoring every moment. None of this would be possible without the support of my family and friends who have stood by me and supported me through the worst time of my life. You are all my rocks and I am so grateful you are all in my life and that I am here to enjoy time with you all. I'm having lunch with friends to celebrate over the next few weeks. Family time together for Christmas.
I will probably write again on Christmas Eve/Day. But as the season is well underway, I wanted to write about what I am feeling during this special time of year. The good, the bad and the ugly. It doesn't matter. It's all good really, because I'm here.