Hi, I have a couple of questions on dialysis. How do you know or what are the symptoms that say it's time to start dialysis? Then, what can happen when on dialysis? The downside of it. It's pretty easy to find the upside but not a lot on the downside and I'm sure there are some. And then, your opinion of an older, 80 yo or older not in the best health, of going on it. I know, ask my doctor and I will but would like to have some peer info before my visit.
thanks in advance.
Hi Jodaer,
There are symptoms that will definitely let you know you are ready for dialysis. Water retention, swollen feet, trouble walking, labored breathing, more frequent muscle cramping, loss of appetite, nausea, vomiting, feeling unwell almost like flu-like symptoms some lethargy, although different people may experience different symptoms. The closer you are to dialysis the nephrologist will start drawing labs about once a week and will also rely on your physical symptoms so it’s important to be honest with them. Once they see you are struggling and based on lab numbers they will recommend a start date. Though not everyone is lucky to have it scheduled and do require emergency dialysis.
In terms of the bad side effects effects of dialysis you may experience blood pressure drops, cramping, fatigue, needle entry pain if doing hemodialysis. Restless legs, anxiety especially after experiencing the horrible cramping. Maybe mood changes because it can be emotionally taxing at times. I’m not familiar with peritoneal dialysis although that is much easier on the body than hemodialysis from what I have heard. You want to be compliant with your diet and water restrictions otherwise that’s when you get in trouble you have to find what works best for you.
In terms of age I don’t have much insight although I have seen that there are older patients who do well if they are compliant and are generally well informed and actively participate in their treatments. Dialysis is definitely tough on anyone at any age i was 30 when I started dialysis and there were good days and very bad days I stayed on dialysis for 5 years but you have to learn to listen to your body and what works for you.
My best of luck to you in your continued journey.
This is a great question. I am glad you asked it and I hope people answer it. I too am at the waiting game to start. So far, I feel fine. But my labs are slipping. As far as the choice, it is all about what you want to do with your life. Is sitting in a chair 3 times a week for hours too much to do in order to have time to yourself to feel good? I think it's a fair trade. Are there things you want to do, hobbies or activities, or family you enjoy? Is your life still bringing you happiness for the most part? Then.... try it. The option is you can always stop dialysis but you don't want to crash into it.
blue kidney answer mostly how your body will feel . I didn’t feel any of those when I started dialysis but my labs were showing it was time to start my nephrologist told me when my efgr fell under 10 we need to have a serious talk I went on dialysis when it was 8. He wanted me to be able to learn cause I was going to do pd dialysis and he said we need to get you on dialysis before you start having problem with what the toxins can cause cause it can make your mind not clear too. If you do pd you have to get a catheter in your stomach . It takes a few weeks to heal . You having training for a few weeks then you have to do it yourself so if it something you can’t do yourself hemo may be best . The only bad thing I have experienced with pd dialysis I have had some really bad drain pain everyone does not get this. And when I was using to strong of fluid I had bad legs cramps . But we figure out the right solution .My doctor said it takes awhile for the Catheter to settle .with pd another con would be if you don’t have much room you do have to store a lot of boxes .
It's great that you are now supporting others like this. Keep it up!
As my hubby get closer to dialysis time, he began to have digestive upsets and his sleep pattern changed where he often got up and rambled around in the house in the dark. He also experienced urination urgency (as a diabetic) with not much happening. His feet started to swell and his blood pressure rose steadily. Then, it suddenly shot way up (240s/120s) so he wound up hospitalized. Standard treatments didn't work to bring it down so he was put on emergency HD dialysis it do so. My hubby fought dialysis to the bitter end, so it was really a roller coaster ride at the end. He later transitioned to PD, which worked out beautifully for us, and then managed to get a transplant as an "old" man. Lol. You're very wise in asking questions, Jodaer. If you plan it right, things should go nicely for you and your loved ones - all on an outpatient basis. I predict great outcomes for you!
Hi Jodaer! There is little that I can add to the already excellent information others have posted in response here. In my experience, I was doing relatively well at 7-8% of kidney function. I was affected by frequent need for urination and I had to be guarded about how I spent my energy and so on. However, it was a bout if diverticulitis, severe pain, and a trip to the emergency room that took me over the edge. I didn't "bounce back", even after several weeks. When my nephrologist called me and I told her this she said it was time for me to begin dialysis. I never really had much edema (fluid retention) but my appetite all but disappeared and I was sleepy and lethargic. Once I started PD dialysis at home it took a few weeks and I started to feel better. I was able to eat more and had to build up muscle strength, mainly in my legs. It is a lot to go through, but once on regular dialysis quality of life does return albeit with the realization that dialysis is a lifeline. Nighttime PD definitely frees up your time, but it takes some getting used to. I wish you all the best, Jodaer!!!🌞
Thanks for all the replies, This is just what I'm looking for.
Hey, thought I'd add my 2 cents, albeit a little late. I'm 70 and on PD, so it's definitely doable for us "older" dudes. Let me know if you have any further questions. I also never had "symptoms" before i started PD at eGFR 6.
Thanks for that question, jodaer. I'm interested in the answers, too. My dad is 86 and his GFR is 9. He has not started dialysis yet, but his fistula is ready to go. He definitely has less energy and is experiencing some brain fog, but has no other noticeable symptoms. He still walks two miles a day and his cardiologist thinks he'll do okay on dialysis. I'm concerned about the downsides and how he'll adjust, of course. Good luck to you and keep us posted!
It sounds like he is in really good shape. Good luck to him.
Hi Jodaer. I am 82 and facing the same question you are. Currently i have decided to give a dialysis a go when the time comes and if it is too difficult then I will stop. Of course if I go another couple of years before I need dialysis then I might reconsider. My doctor already offered me palliative care but I dont think I am ready for that yet. I am sure you will make the right decision for yourself and remember - if you start dialysis you can always stop. Good luck on your journey
I will hold off on the decision until it becomes relevant. I'm thinking if I can hold it off for a few more years I will just go to with the flow. I'm seeing my PCP in August and will talk Palliative care at that time with her.
Sounds like we are on similar journeys. Lets keep in touch and support each other in the process.
Sounds good to me.
I do PD at night on a Cycler...The training takes a couple weeks and they make sure you understand before they turn you loose on your own....I was scard to start Dialyisis...but then I was scard to not start Dialysis...The best part about Home PD is it doesn't consume your day and you do it every night so you feel better...no crashes...I didn't really feel bad or have msny symptoms but I was down to 12gfr...after I began Dialysis I realized how bad I had felt before even tho I didn't realize it...I have been doing it for 28 months now and its been one of the best things I ever did...there are "snags" along the way, but thats what we are here for....when you get Tangoed Up, just Tango on ...Best wishes for whatever you decide
Hello- very informative responses to your question. I don’t have many additional details to provide.
I did PD for months at home. I’m 40 with a healthcare background in a hospital setting. It was a lot of supply boxes. Either 20 or 40 depending on your monthly frequency set up with the delivery. Make room for that. You can learn the machine and steps but it is a lot of heavy lifting setup with the solution bags. I did also have drain pain which feels like cramps or sharp shoulder pain after the last drain. It was 10 hours per night. That’s a little much. You have to practice sterile precautions. You don’t want an infection. I personally never felt better on dialysis so I would avoid that again if I could go back. It was emotionally unhealthy to know I was stuck doing this dreaded treatment every night. My body was swollen 30 pounds, lots of meds, never a cure just random suggestions to tweak comfort. I switched dialysis centers 3 times in 18 months because of the care, things not linked with my primary hospital system and I really needed to find a nurse who I trusted. I wouldn’t wish kidney failure on anyone. It took over my life.
You could try it and always stop.
Yes. My younger sister was my living donor. I had a transplant 5/5/2023 at Ohio State.
Thank you for the kind words. She is a brave girl.
Also, my gfr is 40 right now post transplant with the perfect dna match from a young healthy kidney. I hope your numbers are still the same in that range. I saw a post you mentioned they were high 30s. Are you symptomatic? I can’t recall if you ever mentioned that.
I’m pretty negative about this whole situation so I shouldn’t post those thoughts. I’d like to be supportive, positive and helpful. It’s a tough road to walk sometimes.
I wish you all the best you seem like a very nice person. You’ll know what’s right and best for you. This forum is really the only connections I have with other people going thru the same health diagnosis. It’s been helpful so good for you for reaching out and getting some honest responses. It can be comforting.
Thank you for the kind comments too.
My eGFR is now hovering at 30, give or take a couple of points. I had a big drop in January, about 10 pts, because my neph had them do the new and more accurate test on me. I'm hoping to maintain or slowly decline.
You feel how you feel and it's better to let them out than hold them in. I think this is a good place to just vent it out to people who understand and let it all out. Good luck to you too.
I had no symptoms until I started dialysis, PD. Then, it was let the games begin! Complication after complication after complication.. you get the picture.
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