This is my final post on the subject. My grief will remain private from hereon out! However, I have already learned an important lesson about dialysis, which I feel compelled to share with you
Home hemo is not an easy choice. Originally, I wanted the freedom I thought it offered. As I got into training, with a care partner(s), 70 pound machines, and a storeroom of treatment supplies, I realized that to pick up and go was not going to be as easy as I originally fantasized. Add to that the constant alarms, fluid leaks, forgotten clamps, and one would seriously wonder why anyone would undertake home hemodialysis. Yet I did, and, with all its ups and downs, I still love it!
The availability of home hemo was the deciding factor in starting a blog. In fact, I am exploring some creative options for travelling while on dialysis, and when they come to fruition, very soon, you will be the first to know!
But back to the night of Gabe’s death, I was overcome with grief. The thought of trying to hook myself up the next day was beyond comprehension. I, at least, had the presence of mind to call my nurses, and beg for help. I knew that I could not trust myself to do my own treatment and my care partner was not any better. We were both in a state of shock.
The next morning, one of the home hemo nurses arrived to take care of me. What a blessing. They offered to come as long as I needed, but I decided to go in center for a bit, thinking the anonymity might help until I got things under control. Vacation, I called it, and everyone was wonderful, compassionate as needed, but distant, respecting my need for privacy. It was the right decision.
But after the first incenter treatment, I quickly realized I could never go back. Even with all the glitches, goofs, and alarms of home hemo, NxStage is the cadillac of treatments, and I felt the physical difference almost immediately.
For the past three months on home hemo, my blood pressure had hovered around140/80, and lower. I stopped all medications for blood pressure and fluid retention within the first 2 weeks of switching to NxStage.
My first incenter treatment in 3 months, and my blood pressure started at 170/90 and ended at 228/110, increasing daily during my two weeks incenter. My last reading was 238/130, and yet I had barely gained a kilo of fluid. That couldn’t be right.
Then I thought about it. I was being dialyzed with sodium bicarbonate instead of the gentler, more effective Pureflow saks or bags. The incenter treatment also did not pull the cellular fluid that is my achilles heel. Any additional fluid could also raise my blood pressure. The incenter machines are harsher, for lack of a better, more scientific term, and do not allow for the extra time needed during each treatment to pull the fluid from the cellular level into the blood stream for final removal.
Since starting NxStage at home, I rarely pulled fluid, and my dry weight fluctuated less than .4 kilos, even after 2-4 days between treatments. After my first return to incenter, on a Friday, I experienced my first weekend of mild wheezing since I started dialysis. and that week I was almost 2 kilos over dry weight. Yet even pulling a full kilo, I only lost .6 during treatment.
I couldn’t wait to get back home, to start on NxStage again. Like an addict, I needed that NxStage machine to feel good again, and I’m not afraid to admit it. Incenter was a wonderful respite, there when I needed it, and I love the nurses and techs. I respect their jobs even more, now that I know how hard it is to take care of me. They take care of dozens of people every day, 6 days a week, and I honestly don’t know how they do it!!
The incenter staff even picked up on a possible stenosis, and ran a test on the incenter machine, that is not available on Nxstage – my fistula pressures were out of whack. I immediately made an appointment at my vascular access center, run by Davita (yes, I dialysize with Fresenius, but Davita cares for my access, perhaps the subject for a future blog).
We caught the stenosis early, I had a simple angioplasty, where I did not feel a thing, and was able to do treatment that afternoon! Dialysis is a lesson in change – nothing about any treatment is ever the same, and, thanks to the guidance of good staff, great doctors, and blogs such as NxStage, and Home Dialysis Central, I learn something new each day!
So, the moral to this post is: give me home hemo, with all its craziness, each and every, day of the week! And thank God for the wonderful and caring staff at my clinic who, like Hook Lighthouse, which has guided sailors off the southern coast of Ireland for many years, they and NxStage safely guide me through my days of dialysis,