The travelling is very tiring and makes for a very long day that is making me weak ill miserable and depressed. I would also like any tips people have for
a) Killing time on the machine.
b) Managing the back pain caused by sitting in one position for four hours.
c) Coping with the depression caused by haemodialysis in a large inpersonal unit where you feel like you're on a conveyor belt
d) Any other hot tips for coping with haemodialysis
I am very grateful for any tips and hints.
Hello! I am sure the plan will be to move you to a satellite dialysis unit nearer your home once your treatment is established. Have the nurses mentioned this at all? You should only be 30minutes away - but of course there are variances depending on which region you live in. Depression - again, a smaller satellite unit will improve things here as well. Killing time - TV, laptop/tablet/kindle etc and dozing are what my father does....there will be others along with more tips, I'm sure. Hang in there - best wishes
Thank you for your reply, all very useful tips. I am due to go to a satellite unit, but there are staffing issues there at the moment, so I am stuck with this situation for at least the next two months.
Sorry to hear of your problems on HD.
I have been on HD for 2 years and in my unit we each have a television but my kids bought me an ipad which i use to watch downloaded tv/films and music and this passes the time quite well.
The depression gets easier with time and so does the time you are on dialysis as i thought i could never lay still for 4 hours but now it is no problem.
Does your unit not have adjustable beds? as if you start to ache just change your position.
Hopefully with time you will get to know the other patients and nurses and be able to chat with the ones in the beds next to you.
Hang on in there as things do get better.
Thank you for responding, all the tips are most helpful.
As horrible as it sounds you adapt and it's not so bad. If you can't you can ask to go to a different unit, and it may be they are waiting for a space in a satellite unit.
I was on dialysis over four years, and found the iPad invaluable or a notepad pc where I had a dongle to get Internet. We had TVs but having your own is much better. I took my own pillows and used that to adjust my position. Try too have a chat with the staff, you will make friends, there will be some you don't like etc give it some time.
Don't be afraid to change your time. I used to go early morning thinking I would have day to do things, but in the end I went late evening and that suited me a lot better cos I was able to watch tv and doze and felt more relaxed, and go to bed after the long journey home.
It is a hard adjustment, I got through it, even though I gave up work eventually by acknowledging the alternative!!! It is hard, but u can do it and make the best of it. The unit should also have a counsellor on hand. Good luck
Thank you so much for encouraging me to continue. Its a big life adjustment and because it all happened as an emergency, its been even harder to contend with. Thanks again.
Hi Qunitilus, I would recommend doing HHD it would certainly solve your travel sickness and you can dialyse when you want as it frees up more time. As for killing time on the machine I used to read a book when I was in the unit, I recommend The Count of Monte Cristo. I also used to take my computer to watch dvd's that should pass a few hours with a good movie. As regards the back pain..haven't you got one of them reclining seats? If not I would ask your doctor for some painkillers. All in all time is the greatest healer as you will eventually get used to it hopefully. GOODLUCK.
Thank you very much for your encouraging response. I will consider every tip I receive. Thank you. It seems like time is the biggest thing and allowing yourself to become used to being on the machine.
Hi sorry to hear things are still not good for you, same as everyone says you need to get and iPad or some such thing, my husband has had a stroke and has very bad arthritis and gets a sore bum and stiff lying in the same position for over 4 hours so in Sainsbury's they sell a fleece bed proctor I bought the king size cost £16, I fold it over so there are plenty of layers and he sits on that and it really helps, it sounds like you are in a big unit the renal councillor should make regular visits there and talk to you will having your HD, how is your Hb if it is low it can you weak, are you on any supplement drinks. I am sure like the others said when you get to a satellite unit the staff will be more friendly, I take my husband 3 times a week and stay as to far to return home and I have got my self in the mind set that it is a day out, even if he sleeps through it, you have to make the best of it. Good luck
Thank you for your reply. Things are tough at the moment but it is still very new to me.
Hi there. Sorry you are having a problem settling into dialysis. I have been on dialysis for 2 years and it is a pretty hard thing to settle in to. It completely takes over your life but you just have to get on with it or else make yourself ill. I travel 20 minutes both ways to my unit which isn't too bad. I watch tv, have a tablet and kindle. Also we have bikes (which fit onto the end of the bed) and I cycle for 40 minutes (which passes the time and I am told is good for your quality of dialysis. If you don't have these maybe your unit would consider getting them. I sincerely hope things improve for you.
Thanks for the idea of the bikes, it sounds like and excellent idea. Are you sure theyre not trying to generate electricity from you lol.
Train to do it at home its the best option if you can afford to do it.
Burning sick feeling