Tired of Dialysis

I'm 40 years old and have been on dialysis for over a year now. What can I do to help with the washed out exhausted feeling I have after treatment. It normally takes about 12 hours after treatment to start feeling normal again. It's a vicious cycle and anyone on dialysis knows what I am talking about. You get your treatment which wipes you out. Just about when you start feeling normal again you're right back in the clinic and the whole thing starts all over again. I'm tired of being tired all the time and wish I had the energy to live my life like I used to. Any advice would be appreciated.

[bella1999]

I have tried different types of dialysis which have helped. First of all HDF which initially can be very hard to get used to but I'm so glad I persevered. You'd be better to Google this rather than have me give a sketchy inaccurate description. Now I do Haemo Control which is great if you have a lot of fluid to get off each time. Point is I feel loads better on both of these so maybe ask your renal unit to discuss these alternatives with you! I've been on dialysis for 3 years now. I also did peritoneal dialysis at home for 6 months. You do it overnight all night but I was able to work full time. Unfortunately didn't work out for me but it works well for lots of people! Don't get me wrong I still have "off" days but generally I manage quite well now. I really hope you find a good alternative cuz I do know how bad you can feel! Best of luck!!

[Hidden in reply to bella1999]

What do you mean give you a "sketchy inaccurate description". I thought I was pretty clear with my concern. Anyway, thank you for your reply. I'll take any advice and information to help me figure out how to best manage my condition.

[Hidden]

I can relate to what you are saying. What I actually find with me is that it actually depends how much fluid is taken off. Some mornings after I feel all washed up with no get up and go but this normally lasts until around dinner time. Sometimes feel that once I have that first drink in the morning after that this seems to give me the kick start I need. When less fluid Is taken off then normally the next day I feel fine. Of course it will be different for each individual. Talk to your renal nurses and ask their advice. It is as you say a viscous circle but the unfortunate thing is that it is a necessary one which is keeping us alive. I do Tues, Thurs and Sat days and got to admit normally on a Sunday feel washed up and then Monday and Tuesday AM rearing to go and full of life but then like you say- back to dialysis and it all starts again.

[andy52]

Hi Andrew here you do not say when you dialysis, I start about 6pm

after a slow start find it not to bad, I am 62 by the way.

I do know what you mean though it is life changing, have u thought about a

transplant? its a BIG opp I know I am lucky in that my sister is very willing to do this for me, but a lot of water to go before that happens.

Thank heaven for this site.

Regards

Andrew

[HLPTexas2014]

I have been on dialysis for nearly 17 years. A few things I have learned: Dialysis is a major procedure that is bound to make you feel a bit worn out, however there are several things you can do to help make the treatment a little easier. 1. Fluid control: the better you are at keeping your fluid in check the better you will feel post treatment. Dialysis doctors and researchers have set certain parameters for what is acceptable fluid gain, but I have learned that it is all subjective. As a patient, learn your own personal parameters and adhere to them. If you don't feel well gaining more then 2.5 kg. between treatments then try to reduce it. If you still produce urine you may be able to get away with gaining a little more then someone who has lost all function. 2. Try not to eat while on the machine. Most centers have eliminated this option, but my center still allows patients to eat. When we eat on dialysis the blood in our bodies has to go to the stomach area to help digest the food, therefore, many patients will see a drop in blood pressure as this happens. Blood pressure drops are another reason that many patients feel so worn out post treatment. 3. One of the most important things I have learned to keep tabs on is my hemoglobin levels. Having been on dialysis for so long, I remember the days when it was quite common for patients to receive blood transfusions on a fairly regular basis. Now with the use of drugs like, Epogen and Mircera, doctors are able to keep the hemoglobin in a more acceptable range for patients. Generally, a normal person with full kidney function might run with a hemoglobin between 12 (females) 14 (males). Medicare has set an algorithm that determines when we receive a dose of medicine and unfortunately, since it is so expensive, this algorithm allows dialysis patents to drop to 10.5 before they receive a dose. Now, 10.5 may be perfectly acceptable for some patients, but in my case if I drop below 11.5 then I feel miserable 24/7. I am exhausted at the simplest of activities and generally also get very short of breath. I had to initially argue with the "professionals" about how I was feeling and they offered me an explanation of the parameters set by Medicare and doctors. Thankfully I have a doctor who listens to his patients and he has adjusted my orders so that when I fall below 11.5 I receive a dose of medication. This again is subjective, so you have to pay attention to your labs and how you are feeling. It might be wise to keep a short journal for a few months to learn exactly how you are feeling and what circumstances surround those feelings. The most important advice I can give is to know your own body. You are the best at determining what is going on and why. Dialysis patients have more control over their care than they often think. When you become proactive in your treatment, you will begin to feel better over all and look forward to a long term, semi healthy, happy life.

[coaching]

Hi Squishyface,

I have been on dialysis for 23 years, at first it was a struggle. I think the first few years of dialysis, your body is just starting to adjust to the changes and you can help yourself by taking personal decisions regarding your lifestyle ( fluid intake, see a renal dietician etc.). Do research and ask your consultant loads of questions. Dialysis is draining and tiredness is not unusual. I personally prefer to dialysis in the evening after i have been to work, any other times i found out i am no good to anything.

Just hang in there, you will figure out things. Hope that helps!

All the best.

[Hidden in reply to coaching]

Thank you for your advice. Wow you have been on dialysis 23 years? Why haven't you had a transplant by now? I am already on the transplant list and I hope not for long. Thank you for taking the time to reply to my concern. Have a blessed weekend. 😃😃😃😃

[chito]

When that happens is unity too much water taken out don't let them take out too much water. if you gain 5 pounds of water take out 4, Best of luck!!.

[minimaggot in reply to chito]

ignore this dangerous advice. this would mean, over time, a build-up of fluid.

[fredinspain]

Have you considered APD at home. Much milder in it's effect and you connect up to a machine over night and sleep for 8 hours and it's done. Talk to the staff at the unit. It doesn't work for everyone though as a small percentage of people find it painful.