Want to do it at home!!!!

[perisama]

Hello all   ,Sorry but I am about to vent my spleen here!!!!
                     I am Rich's partner. He is on APD and has been for 2 years. He has rubbish function in both kidneys and 5 weeks ago had fistula created to start Haemo ASAP. Thing is.... we want to do Home haemo. We know that we or rather I will be trained for this, his fistula had to be done in his dominant arm. I was going to do all the stuff for him anyway but that really cemented the situation.
                    Now here's the thing. We are being told that home haemo (HHD) is "just in it's infancy" in our region. We are also being told that"Oh, someone has dangled a carrot in front of you!!" !!!!!!!!!!!!!!!!!!!!!!!!!.
                   We are being told that we should ask to be trained from the outset but to have HHD is a long way off. !!!!!!
              I'm sorry but I'm afraid Rich may not live that long!!!!!!!!! I am doing all the research I can at the moment to point out the advantages of HHD and will write to the head of renal at our hospital, then I will go to MP's and beyond to get home haemo for Rich. We satisfy all the critera neede for homeHD.
              Oh and we were also told that HHD is brilliant in Manchester!!!!!!!!!!!!!!!!!!!!!!!! (Google that). What are we supposed to do? Move??
            Sorry, I am ranting. I need to know if HHD is an impossible goal. is there anyone out ther who has had a similar problem?
                 
                     

[lmunchkin]

Hi Peri.  I see you are in the UK.  I really don't know much about how Uk does things, but in the States, it is flourishing amoung the ESRD community! I personally do my husbands NxStage home dialysis.  We have been doing it for over a year now!  Yes, I think it is much better dialysis for many reasons other than the obvious!  We control his care.  We do it longer so as to give him better cleansing, but slower to avoid wash out feeling!

We watch Tv, we eat, and yes, we even cuddle!  My husband has been dialysising for 7 years and 6 of those have been done in the comforts of our own home.  5 yrs PD, 1 INCenter and 1yr to date with NxStage.  We favor Nxstage the best.  It suits our needs and we love it!  I believe it has brought us closer together as a couple!  If thats possible, cause we have always been close!

There are others from the UK who might can give some insite to your situation!  But yes, I think doing D. at home is best all round!

lmunchkin

[perisama]

Hi Munchkin, Thanks. I need to shake up the NHS here in the UK. Government guidlines and recommendations by NICE are not being met at all. Some areas of the UK are fab wit HHD but sadly not here in Dorset. Rich says that he can't stand the thought of HD in hospital for longer than is necessary for my training. He says he would rather just give up and die!!!

[billybags]

We can do it in Nottingham. Do you think it is a case of "not enough money" going in your pot. get on to them.