For me exercise and activity has been the driving force of my recovery. The stronger I become physically, the more strength I gain mentally. I started out walking to the corner of my road and back--maybe 150 yards total. Then in a week, I added carrying a five pond weight in each hand. After a couple of weeks I had worked up to one and a half miles, still carrying my weights. Now at almost three months post transplant, I am comfortable with a two-mile walk--about 40 minutes.
It has been a continual challenge to get back to my typical, pre-transplant schedule--up and dressed by five am, writing or reading until seven, then work. This week coming into my three month mark I have achieved that. I will get back to my yoga class tonight for the first time since transplant, and later this week rejoin my Thursday night music group. I also feel that I have built the stamina through walking to resume day-off outings with my wife. Last week we went out to lunch and walked around downtown Portsmouth, NH shopping and browsing in shops.
The best advice I received from a fellow transplant patient was to begin to challenge my self with new activities each day. I began by sweeping the garage floor. Small steps are big steps. The next day I cooked our supper--it was my first time in the kitchen in six or seven weeks. It took me about forty minutes, and when I finally got what I had prepared into the oven, I was exhausted. But this was a turning point. It felt good to resume normal stuff. This weekend I attempted some yard work. I only lasted for an hour or so, but it felt so good to get done what I could.
Tomorrow will be my first full day on a job site. ( I am a carpenter) We will be installing shelves and building a desk in a condo. I never thought I would get there. Nine weeks ago I was in a rehab hospital learning to walk again.
For me recovery has been a set of steps. Setting goals daily and weekly. Trying is important. Sometimes I just can't, and sometimes I push through the constant headache and awful med side effects and sit at my desk all day. Building myself moment by moment, day by day. I also feel strongly that using whatever resources and support available is crucial. Family, doctors, therapists, trainers, support groups--whatever it takes to work through the emotional low points and stay positive and moving forward. Post transplant life is a new normal to adjust to. I have limits, but I will challenge those limits each day striving to live joyfully.
Be well and stay strong.
@mostlybill it sounds as if you are making progress in your post-transplant life. I think in time you will find very little difference in how you feel Post-transplant vs how you were before, and if you comparing to after having the health problems that led to transplant, that those differences will all be positive. I too found exercise to be very helpful. I belong to a health club and returned there as soon as I got the OK.
I did not have the problems that you describe. From the reaction of my transplant team I guess I was unusual. At the time I thought they were just being nice.
It seems early to get off prednisone but hopefully they will be able to at least reduce your dose.
You mention Portsmouth, one of our favorite cities. We love going out to dinner there, and I enjoy walking around the city too. We hope to move, downsize, within the next year. Portsmouth would be a top choice if it was more affordable.
I presume you are in MA or NH. My transplant was at Mass General, was yours there also? If so, based on your post-transplant appointment being on Thursday we did not have the same surgeon, mine does post-transplant clinic on Wednesdays.
Looking forward to hearing how Thursday’s appointment goes.
JK