What to expect

[supporter]

Hello everyone.  I'm new here, and this is my first posting.  My wife (also a member here) has just found out that she may have to start dialysis soon, and is very worried about how she'll feel while on dialysis and waiting for a kidney, both in general on a day-to-day basis, and also while actually sitting through treatments.  She's always been very active and physically fit, and dreads the propect of feeling sick and fatigued all the time.  Can anyone please tell us what dialysis actually feels like while you're having treatments (whether in clinic or at home), and how you feel in between treatments?  Is fatigue a serious problem, or is it not as bad as one might think?  Is it uncomfortable or painful sitting through treatments?  If she knew that daily life will not be a matter of dragging herself through horrible fatigue or discomfort so that she could still garden or swim, I'm sure it would make things much more bearable for her to face.

I'm not looking for unrealistic "happy talk" with this question, but some factual encouragement from people who have actual experience would really be appreciated.

Thanks, everyone, and I look forward to talking to you all in the future.


Edited: Moved back to FAQ's - okarol/admin

[galvo]

You won't find unrealistic "hapy talk" here, supporter. I am relatively new to the dialysis experience, and I know it affects other people differently. I am doing in-centre dialysis and have absolutely no adverse feelings while undergoing the treatments. The only problem could be boredem. You'll find various threads here on suggested activities while on D. I watch a bit of TV, read a lot, have a cuppa and some snacks, a bit of a doze and, hey presto, the time is up. I suffered from terrible fatigue before I went on D but, after 3 months, I feel as fit as a Mallee bull (oz expression).

I was very reluctant to begin dialysis, but, boy, I am glad I did.

[billybags]

First of all I would like to say welcome supporter, you will find lots of information on this site and some really nice people that will listen and help you. You do not say where you are from. My advise is to find out as much info about dialysis as possible. Forearmed is forewarned. Every one is different and what sort of dialysis suits one will not suit another. My husband is currently on what we call CAPD, you have a tube inserted into your peritoneum and you do exchanges at home 4 times a day, 7 days a week, it takes about 30 minutes and he feels fine with this. The other way is Hemo dialysis 4 times a week at a unit. He found that this really knocked him up, he was tired all the time but every one is not the same. Swimming on CAPD is a no no, gardening you can do as long as you do not over do things, like digging, lifting exct. Hemo I believe you can swim, some one else will answer that one. I hope you will have choices as to which dialysis you can have. Remember ask lots of questions, talk to your doctors and nurses find out as much as you can. Last thing, it does seem scary, its a different path you are undertaking in your life, it is not as bad as you think. Keep coming back, look forward to your posts.

[RichardMEL]

Welcome supporter.

Everyone has slightly different dialysis experiences - some are really good, some are not so good.. and others can slip between good and bad. I have my moments (like today was not a good session) but in general I am fairly stable. Once your wife has been on D for a couple of months hopefully that's how she will be and treatments will be uneventful - the most she will feel is boredom.

But, it's not always like that. Today my toe cramped which was not fun - and it wouldn't go away for about 20 minutes. However it is better for the toe to cramp than the calf or something else which is even more painful. Cramps usually can occur if too much fluid is being taken off - however in my case I'm almost certain that wan't it. I think I was being punnished for being naughty. LOL

In general though during dialysis you feel absolutely nothing. The needles do not hurt once settled in, and you don't really feel any feeling of blood pumping or being pulled or anything.

As for during dialysis sessions... I personally find that after a session I might need a cat nap (the cat likes to assist) but in general I am OK and the next day I am fine. I work a 5 day week (just the mornings I do D, and full days the other day) and keep active by walking and stuff like that. Yes, sometimes I get fatigued more than usual, and other times I do stuff as normal.

There's no real way to predict how your wife will react to D except that she probably will, in all liklihood, if her general health is OK do just fine and still be able to do many of the things she does now - that's half the purpose of doing dialysis. Apart from the time issues being on dialysis really shouldn't be a massive impact on one's life.

For the record I too have FSGS.

Again feel free to ask questions and we will give the best answers we can.

[Stacy Without An E]

I don't know if this description will help, but this is how I describe Dialysis to the Norms:

Imagine you're a fully soaked washcloth.  The fluid upon your mass is weighing you down and making you sluggish.  During Dialysis, you're twisted and turned until most of the fluid tumbles down the drain.  The weight is lifted, but now you're exhausted from the entire process.

The first few months will be the worst, as her body adjusts to the treatments.  It won't be easy, but tell her to attempt to keep up with her physical activity level.  It will help immensely in fighting the effects of treatment.

[kellyt]

That's a good description, Stacy.  And being that I've never been on dialysis it sure does paint a picture.

[kitkatz]

The first few months are going to be He**. But it gets better.  Be sure to eat what you are told to eat.  Maintain a healthy diet.  Watch the fluid intake. Try to go back to being fairly active soon.

I had complete renal failure in 1998, started dialysis, went back to work as a full time teacher two months after the kidneys failed.  I continue to work full time and am in my 11th year of dialysis.

[supporter]

Thanks, Kitkatz, it's encouraging to hear you're doing so well after all that time.  How are you feeling now?  Are you on a transplant list?

[kitkatz]

No I am not on transplant list. I get to take my chance on dialysis for the rest of my life.

[cookie2008]

The worst of the treatment is the needles once there in you dont feel anything most of the patients use the emla cream to help numb the area. During treatment it is boring you can read, watch tv, or nap. Im at home now and I use my computer and I sleep during my treatment (Nxstage).  Just watch your diet and your fluid intake and keep an close I on your dry weight when they set the your goal in the machine you will be fine and keep in contact with your Doctor discuss what is happening if you disagree with something or dont understand something ask the more information you have the better it is for you.

[supporter]

Thanks a million Kit Katz, and you too, Cookie2008.  It's a great help to hear from people who are or have experienced things firsthand.  Kit Katz, are you having your treatments in-clinic or at home on Nxstage, etc.?  That's really impressive that you're able to keep teaching, especially after all this time.  My mother was a teacher, and my father was a grade school principal, so I know that it's a very physically and psychologically demanding job.

My heartfelt thanks to all of you.  Your descriptions and encouragement have been a big help to me and my wife.