Why Home Hemodialysis?
In April of 2020, during the height of the first wave of Coronavirus here, mom had a nephrology appointment that would change everything. Her cognition had slowly been declining, and brain fog was a common occurrence. She’d had a fistula created for the dialysis we knew was coming, but she was afraid to start because of horror stories she had heard from her friends and acquaintances who were in treatment. She had been forgetting medication more often, was barely eating, and had started to have issues doing tasks she had done for years (like take her blood sugar). When I would talk to her about starting dialysis, she would say it was fine and not time yet. No one in her care team, including me, wanted to force her to start until she was ready, but it was clear she was declining. We had created large print boards for her to read daily routines off of to try to help with the things she was forgetting, but even those weren’t helping much. My husband took her to her appointment that day, and when she came back to our house after I knew something was really wrong. She looked yellowish, she was very winded from walking, and she could barely hold a conversation. She had lost 30 pounds in the last two weeks. I told her I thought something was wrong and that I was really concerned, after about 15 minutes we decided we needed to take her to the ER. I wasn’t able to go in with her, but for the next four days, they took good care of her, starting dialysis in the hospital with her cardiac surgeon on call to come and take care of any blockages. I’m not 100% sure of everything they did while she was in there, communication hadn’t been totally figured out with families yet and mom was so confused that I can’t be sure what all of what she said happened meant. The gist seems to be that they did a quick surgery to get rid of the blockage in her fistula, then started dialysis and did it for 3 days before releasing her.
After she came home it was like night and day. She had more energy, she felt better than she has in years, and the weight stayed off of her. We started doing treatments in-center 3 days a week and continued to infiltrate a lot. Because of COVID restrictions, she would frequently leave with low blood sugars. In November we transitioned to training for in-home dialysis, we had to wait until her fistula matured enough, but she had been having problems with blood pressure in-center. When we made the switch, her blood pressure instantly improved, and infiltration went down to almost zero. She recently had a second surgery to remove a blockage lower in her fistula and the problems have nearly disappeared in her access. She still has bad days where things go wrong, but they are a lot less.
Our decision to do Home Hemodialysis was the result of education on all the modalities available to her. (A link to the descriptions here: https://stanfordhealthcare.org/medical-treatments/d/dialysis/types.html) Peritoneal wasn’t recommended because of her diabetes, the dialysate used I the treatment can affect blood sugar, and hers had been fluctuating a lot from her kidney issues. We decided on hemodialysis, but we wanted to do it in-home. We knew she would have to go in-center for a bit to make sure that everything was working correctly, but that the end goal was my husband and I training to do it long term. When we switched, we were told all the health benefits of in-home vs. in-center, but the biggest one was time. We dialyze 4 times a week instead of 3, which means a lower/slower pull that doesn’t stress her body as much. During that 3-4 hours we talk, play games, and have family time instead of her being in a medical facility we can’t enter currently. For our family, home hemodialysis means more time because of extended life expectancy as well as more time as a family. It’s been the best health decision we have made in this whole process.
