Recently I was asked what life on the transplant waitlist was like. Frustrating. Limiting. Discouraging. Defeating. Encouraging. These were my first thoughts. But as this was an actual video taped interview I knew that wouldn’t cut it. The question gave me pause. What was my life like these days? Challenging. That’s what is.
I am plagued by constant fatigue to the point of exhaustion, added to this I am not receiving enough oxygen to my brain or extremities. Both of these issues tend to make activites difficult, if not interesting. I have learned to adjust, rethink things and adapt. And once I have learned what my new normal is…it changes! Most of my days are pretty laid back and mellow. I usually can be found in fleece lined leggings, thermal top and sweater boots. If it’s winter I add a beanie and fingerless mittens. Yes, this is inside. You see with heart failure the blood doesn’t circulate well to the exteremities, it goes to the important place like organs. Also I take coumadin, which thins the blood thus, making me colder. So yes, even in 70 degree weather I am cold.
I only have so much fuel in my tank, therefore I have learned to prioritize my days. Cooking supper for my husband, peddling on my machine, and taking a walk with hubs and the dog in the evening are my prioritites. Now, if I have a doctor’s appointment or other appointment then that is pretty much it for my day. I go home I sleep. My tank is pretty much empty, meaning no walks, no cooking dinner, no nothing.
The last few days I’ve been feeling more run down, with more symptoms such as chest pain and shortness of breath. For now, until I adjust to whatever this new normal is, I will lay back in my recliner keep the tube up my nose and keep walking through life in my sweater boots.