Weighig up alternatives

[rose1999]

Hi, I'm new to this so hope I'm posting this in the right place !  As I said in my  intro (which I did put in the right place!), I'm not the person on dialysis (and for that I am very grateful) but my 78 year old Dad is.  He currently has hemodialysis and travels nearly an hour each way to the nearest renal unit (we live in Shropshire in the UK).  He is unable to drive as he has had a major bypass operation on the arteries in his leg which had 'furred up' due to arteriosclerosis , he also suffers from gout (is on alopurinol), high blood pressure (which sometimes falls really low when on dialysis) and has a hiatus hernia.  Hospital transport was adding another 3 to 4 hours to his day and so we now pay £100 per week for a taxi - expensive but worth it to give him better quality of life.  To get to the point (sorry but I wanted to set the scene) he hates dialysis and thinks home dialysis would make things better.  He's spoken to the nurses at the renal unit and to some of the patients there, but can't get a clear picture of EXACTLY what is involved.  I wondered if anyone can tell us, what are the advantages of home dialysis and more importantly perhaps, the disadvantages (bearing in mind his age and general lack of stamina).  Dad tires very easily, has to have EPO and iron injections weekly at the unit and, if he has home dialysis, will have to manage most of this on his own.  Although I try to help as much as I can, I am a widowed mum of 2, I have my own hoe to run and I have to go out to work so I don't have a lot of spare time and I can't be a lot of help.  Mum lives with him but is frail and would not be able to insert needles or anything like that.  I have assumed that transplantation is not an option at his age and with his other health problems.

My gut feeling is that he should  try to accept that 3 days of his life are given over to dialysis but that he still has 4 days to do other things, I worry that (because he will be slow and probably make mistakes) home dialysis will take over every day, whether it's CAPD or APD, but I may be wrong - you guys know what it's really like.  Is there anyone out there who didn't start home dialysis until in their 70s?  Is it as easy as some people make out or, at his age (and we have to be realistic) are the risks too high?

I'd appreciate any information yo can give me.
Thanks a lot
Rose

[jbeany]

I can only speak about what's involved in home hemo.  I've just started on the new NxStage program myself, but I know that's not available in the UK, so if your dad isn't capable of doing PD, it would mean traditional home hemo on a machine that's basically the same as the one he's on at the clinic.  Do you think he's capable of doing all the technical steps necessary to run that kind of machine?  The NxStage is supposed to be the "easy" version of home dialysis, and the training on the machine still takes about 3 weeks. To do home hemo you have to be able to access the blood at home.  If your dad has a graft or fistula, that means being able to do his own needle sticks.  He will also have to keep track of daily sessions, send all the paper work in, arrange for weekly blood draws to get to a lab, and be capable of taking charge of his own care.  Most places won't train you at all unless you have someone who will be there with you every time you do dialysis.  It's really more of a team effort.  There are also the issues of space in his house - supplies and the machine will take up a good chunk of one room and a good sized closet for storage.  The supplies can also be quite heavy, and will need to be stacked and rotated.  Many of the home machines have special plumbing and electrical requirements.  Many people who live in apartments will find the landlord unwilling to let them make the necessary modifications.

It's certainly not impossible, but I'm not sure I'd call the whole process easy.  I don't think there's an age limit where it suddenly becomes too complicated, but you know what your dad is capable of - does this sound like something he could do?

[Ken Shelmerdine]

Hmm...... difficult one to answer. I would say that CAPD (manual exchanges) would be the simplest and easiest method of dialysis. There's no needles or machinery involved. The dialysis solution just drains into the abdomen and then drains out a few hours later. The procedure is repeated a number of times depending on the dialysis therapy prescribed. There is no machine involved, you just hook everything up manually. The advantages over haemo I am told is that peritoneal dialysis is much more gentle on the body's system without the highs and lows which can take place during haemo. Also you can make it fit around your lifestile.  Disadvantages are, initial surgery to place a catheter into the abdomen, and a very rigorous hygiene protocol to guard against peritonitis. Best of luck to you and your Dad.

[rose1999]

Hi, thank you both for taking the time to reply, it's really helpful to get information direct from someone experiencing it. 

By the sounds of it, home hemo will be too much for Dad to manage, neither he nor Mum would be capable of using needles for a start and, as I said, sadly I don't have enough spare time to do it all for him and I can't afford not to work.  Space could be an issue too as they live in a very small 2 bed bungalow with just a tiny kitchen and a small sitting room. CAPD sounds a better option but the thought of peritonitis is scary.  Just how much attention to hygiene is necessary, I'm not implying that he isn't clean - he is, but is there a lot of disinfecting etc involved in each exchange.  Do you have to go round with a drip when the fluid is draining in and out, or is that a short process?  And what about his EPO injections and blood checks and things?  Sorry to ask so many questions but this is new to us all and we don't want to make the wrong decision.  Finally - if he tries CAPD and can't manage it, can he go back on hemo at the unit, silly question I suppose the answer has to be yes, but is it a lot of hassle having lines put in again etc or will they be left in (he has a line into his chest at the moment).

Thanks again for your help and sorry to be a nuisance asking more questions.

Best wishes
Rose

[MyssAnne]

Rose, I am on nocturnal peritoneal dialysis. I started out on manual dialysis, then went to the cycler. I love it. Your days are more free. Now, your dad could go either way, or both, I do both manual and the cycler. As for hemodialysis, yes, if he doesn't like peritoneal/can't handle it, then he can go back to hemodialysis.  It's work, but after a while, it does become routine. There might be a problem with storage if he doesn't have space at hand to store boxes and supplies.   Just wash hands thorougly wear a mask, make sure ports (connectors) dont touch anything they shouldn't, and that's about it for being clean. That, and no fans/heaters/open windows will connecting/disconnecting.

[Slywalker]

Rose  - I agree with MyssAnne's reply and would add that the Epo shots could be done by a visiting nurse if your Mom couldn't be trained.  I also do the cycler at night and the regiment is just like MyssAnne described.  My husband gives me the shots.  He was trained by a nurse.

Hard decisions for sure. 

Best wishes

Sandyb

[KT0930]

Rose, I also agree with Myss and Sly. I was doing manual exchanges on PD until a week ago when I got the cycler. The cycler may be too much machinery, tubing, etc for your mom and dad to deal with. However, the manual exchanges really are as easy as everyone is making them out to be. The whole process (hooking up, draining, filling, and disconnecting) does not take more than an hour, and that is on a very slow day. Exchanges are repeated (depending on the prescription) 3-5 times per day. The problems I could see for your dad (from what I know) would be that on the weekends, I liked to sleep in late, but the later you start in the morning, the later you have to stay up at night in order to do your final exchange, because there's a certain number of hours you have to wait in between exchanges. In that time in between, however, life goes on as normal. Also, he would need to be able to store a month's worth of supplies at a time. For me, that was all the smaller stuff plus the fluid, which was a pallet about three feet square and four or five feet high (sorry, I don't know the metric conversion). We also found it useful to run to the dump about once a month to get rid of all the empty boxes...unless the driver who delivers them would take them back the next time, but they wouldn't for us.

Hope he finds something that works for him!