Sigh. Occasionally I have days that are hard to get through. Nothing has changed overnight but I just get fed up about everything. Right now, it’s the heart issues and what seems to be too much fluid in me. I know some people have real scary diseases that cannot be managed. My issues are more like a very slow moving train but it’s hitting new stuff on the tracks. It seems like there is an answer to everything that ails me but the totality is overwhelming sometimes.
For several weeks now, I’ve been having more and more trouble breathing while lying down. For awhile, I could get by sleeping on my right but slowly, that’s not working either. It’s 3:40 am and I haven’t slept one bit. I’ve been trying to get the bed into a position that allow me to breath a bit but have not found it. As soon as my head hits the pillow, I’m gasping for air. Plus the pressure on my chest seems to be increasing as well. I’m pretty positive it’s not the heart itself since I walked 15 minutes on the treadmill last night and felt mostly fine, while bending over to pick up laundry winds me.
Then there’s the swelling in my ankles and feet that seems to be persistent. Post heart surgery, I was pretty bloated and it took a few extra dialysis sessions to bet rid of the excess fluid. Since March, it seems the fluid retention has gotten worse even thought my weight has dropped. I think my real weight (without fluids) is even lower since I’ve been eating a lot less, and I still have too much fluids in me. I haven’t come close to the amount of cramping as before on hemodialysis. Maybe I can ask the nurse to pull more fluids out today, or see if I can talk to a nephrologist since it’s Tuesday.
The current situation is that I run out of breath kind of randomly, probably based more on body position than exertion. My doctor friend thinks it may be the chest wall healing and constricting, while my cardiologist thinks it’s musculoskeletal too. I need to call today to set up that CT scan so the thoracic surgeon can see what happened. The excess fluid is just uncomfortable since I can feel the extra pressure as more nephropathy. I think the danger is that the skin will stretch out and crack, and I’ll get several spots where infections can take hold. Infection of the feet for diabetics is bad news.
3:51 am. Maybe I can sneak in a 30 minute nap before leaving for dialysis. Another week of life in paradise…
Life with chronic diseases 