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New to Home HD

PostPosted: Tue Jun 11, 2019 9:33 pm
by salthepal
I’ve gone through the training with my husband which lasted for four weeks attending “school” six days a week with Sundays off. Got the certificate a month ago and started ladder needling at home into a gortex graft because my veins and arteries unimpressed the radiologists. Initially we had problems with the Nxstage cycler which had to be replaced and then the Pureflow which was also faulty and had to be replaced. This didn’t exactly inspire confidence as we naturally thought that the faults were on our part rather than the machines when error codes showed up.
I am now in hospital in a 4 bed unit because my gortex graft failed producing black yukky fluid when needled. I was operated on, patched up and then reoperated on when I started haemorrhaging under my armpit.
I was told a long time ago by my nephrologist that I would not be suitable for transplant surgery because I have a history of abdominal operations in my early twenties due to Crohn’s disease which is now inactive.
However I am sitting in a ward surrounded by 3 transplant ladies, (I am genuinely thrilled for them), one having had her tx 7 years ago and the other two a few days ago.
On this forum almost everyone speaks of a tx as being almost automatic after a wait on a list so I can’t help feeling that perhaps this may not be the correct forum for me and must admit it makes me feel despondent.
Is there anyone else like me out there who has been told they are unsuitable?

Re: New to Home HD

PostPosted: Wed Jun 12, 2019 3:25 pm
by wagolynn
Hi saltheple,
I elected not to have a transplant because at the time it was being talked about I had had a couple of heart attacks, and because of my age, I just thought it was a waste of a good kidney.

Once you get settled with HD you should be OK, and doing it at home makes it less intrusive.
My youngest daughter (now has a transplant) used a Nxstage machine at home, she found them (Nxstage) very helpful, the only complaint she had was the stirrer on the tank of dialysate made a noise.

Re: New to Home HD

PostPosted: Sat Jul 06, 2019 6:15 pm
by JMan

There are lots of us not on the list (after 3 transplants, lifelong dialysis is my lifeline). On this forum and many of the other Such as IhateDialysis (USA) Davita (USA) and the many Facebook Groups for charities and other organisations. Theres also HomeDialysis Central and an NXstage users group. All of which have an international following of members.



Re: New to Home HD

PostPosted: Mon Jul 22, 2019 6:12 pm
by JMan