Btw, how long have you been on dialysis? …anyway, I am single to but I don’t live alone…my income is not enough on getting around the bills so the only viable solution is to live among other people and sharing resources…
Patients who live alone shouldn’t be denied the right to dialyze alone BUT I think it’s very dangerous because it involves the handling of your blood so if anything happens wrong and you don’t have supervision then it’s like being in a haunted house with the reaper standing tall in the front door!.. :shock:
Cathy I agree completely. My own experience of bringing people into my ESRD life has been negative. I had a friend who I met in college - in 1982 - we played together, worked together, road tripped together and then lived together and never had a serious problem for 20 years. Like you Gus I share my home renting out rooms and a mother-in-law style apartment. “D” rented a room for a couple years and then when I decided to go to home dialysis I converted the room I had been renting to him and let him move into the mother-in-law trading rent for his help in doing dialysis.
When I first went home in 2001 I was on the B Braun and needed a helper and he stepped up - I was happy. For the most part he did a good job being my helper and I ran for a year doing short daily hemo. Looking back I can now see that our relationship changed, he became much more involved in my life - we had to coordinate schedules - and he took an interest in ESRD which I encouraged. But now I know he never understood what its all about but what was really weird was when I switched to the Aksys after a year.
I no longer needed - or wanted a helper - but D had become obsessed. Obsessed with ESRD, with my activities, just with my life. I had to start getting mail at work - mail related to my ESRD volunteer activities - it got so I felt uncomfortable when I was around him. I had a friend - a girl - whose company I much preferred and when she went through the Aksys training with me I guess he got jealous of her - to the extent that he spread hurtful lies to my neighbors. I am sure there are relationships that he ruined that I don’t even know about. I hesitate to describe all the ways he creeped me out because when listed or mentioned they seem so petty but it wasn’t just one thing it was a hundred different things and by the end I just wanted him gone. Any goodwill he accumulated through being my helper had long been used up but I think it is all history now. It took me a while to really believe what he was saying/doing but give me a couple years and I’ll figure it out. A new renter is moving in as I write this and I feel like a weight has been lifted or the air has cleared. He also burned his bridges where I work so now we can just both move on, but I guess my point - besides venting - is that ESRD is a nasty witch of a disease and when you bring a helper into the picture you never know how it will effect them.
With the Aksys and my new renter I do all the work and as to my renter - “T” can call 911 if I start screaming or stomping on the floor. Just what any person would do or for any other, it does not give him any particular standing to involve himself in my life.
I am very grateful that my center allows people to make informed decisions about their treatments. We are adults, it’s our life. My provider would prefer that someone is in the house but I know home patients - Mike Matson for instance (he passed in the last year after over 30 years of dialysis) - who dialyzed alone for a decade(s) starting home dialysis in the '70’s. Mike didn’t think advertising the fact that he ran on his own, on a three day a week schedule with machines that were far less advanced, would be in his own interest.
This is why I am glad that with more frequent dialysis Cathy and I feel comfortable telling people that with progressive home therapies you can be the same single independent person you were preESRD. I have never heard of a instance where remote monitoring “came to the rescue” and saved a life. I predict that as more people are allowed to do it themselves it will be come clear that it is safe and in fact the safest healthiest option - just my prediction, my opinion.
btw the only other time I ever really involved another person in my ESRD was my brother who gave me his kidney in 1988. I was his Best man at his wedding in 1989. When the transplant got the initial condition he may have been more disappointed then me, and our relationship has never been the same.
As everyone knows I have been my fathers partner on nocturnal for about 4 years. If I should ever need dialysis; I wouldn’t hesistate to go it alone. In NY state I believe the law is you can’t run alone unless your monitored. It was my understanding the monitoring is done on slow nocturnal patients not just to prevent something from happening but it was the only way they could allow patients to run alone. In the 4 years there were 2 instances where the monitoring was nice. Once I missed putting in a goal and once I didn’t have the BPS where I normally ran so they called to see if I was having a problem with the access. It wasn’t the access, I had just goofed. I think one time they had a patient who was sleeping through an alarm and the monitor called and woke him up to take care of it.