What's your experience with dialysis? Give & get support here

@kamama94, Very glad to hear that so far so good on the surgery results and know you must be very glad to be back in your comfortable home again! We all know that hospitals are the least likely places to get any rest so hoping that you'll be able to "catch-up" on some extra naps and uninterrupted snoozes!

Pretty nice day!

Sunshine's beautiful, arm's not too sore, I've had a little more energy to accomplish some cooking and do dishes, medical equipment got delivered this morning, nurse visited after the afternoon nap.

Buckey spent the day with Mama Becky and Daddy Dogwalker, who said he started wanting to come back home about the time I started to make supper's vegan gravy a little while ago! How could he tell when he was outside with friends and I was inside the building inside my apartment?

I'm beginning to fully realize I probably won't be able to function at the same level as before all this happened but for now this is a good day to live!

I'm pleased to hear that you had a good day, @kamama94! Wishing you lots more.

@kamama94 I seem to recall a saying about adjusting your sails to continue your journey, when the winds and weather change. Kinda sounds like where you are right now! Glad you are feel better and making adjustments, realizing the reality of things, but continuing to cheer us all up!
Ginger

@kamama94, Great to hear that you had energy to do some cooking and arm is less sore. Isn't it uncanny how our 4-legged loves know when it's time to make their presence known and how adept they are at telling time?

Precious sits on a chair by breakfast bar to let me know it is "dinnertime"...have noticed the little mischief has begun perching herself a bit earlier and earlier each day...so far I'm holding to regular schedule. lol

What is the age limit for a transplant anyway? Also, how long have you been diagnosed with CKD?

I undergo hemodialysis 3 days a week, MWF w/Sat, Sun “off.”

I’ve noticed that by the morning of the new week, nausea and fatigue are beginning to return. Others have told me they experience this as well, even patients who have been on dialysis several years.

After 3-4 hours of blood cleanse the first dialysis day of the new week, some people say it’s all they can do to get home, remain upright long enough for a bite to eat, then lie down exhausted. This has been my experience also and I actually do nap after I get home, waking up long enough in the evening to attend to meds and actual bedtime prep, then sleeping intermittently throughout the night.

The day after the first session of the week, some tell me they’re not as tired while others (like me) continue to feel queasy and tired until the end of the day and the night before the 2nd dialysis of the week. Again, the session is exhausting and patients say they’re worn out, can’t wait to get home, eat something they can keep down, and go to bed.

The day after the 2nd session proceeds much like the day after the 1st session, though the fatigue and nausea aren’t as intense.

The day of the 3rd dialysis of the week seems to be almost equally hard. For me, it takes most of the day afterward to recover and feel well enough part of Sat and on Sun to do a load of laundry, wash some dishes, prep some meals ahead. Others at my clinic have shared similar experiences.

So the pattern is a day of dialysis and a half-day to recover for a half-day feeling a little less ill and a day and a half over the 2-day hiatus to accomplish household tasks and additional self-care.

Even then, dialysis never removes 100% of the toxins – some stay in the body and some even accumulate slowly, which is why dialysis eventually offers less and less relief unless body chemistry stabilizes at a survivable level.

Don’t get me wrong here, these aren’t complaints, they’re realities and dialysis is way better in most cases than no dialysis even if this is merely postponing the inevitable.

Which is why I find today a good day to live.

@sbshreeve, I was diagnosed with CKD in 2013 when labs showed more decline in filtration than age appropriate. I'm not sure of the exact age cut-off on transplant lists but three years ago at age 72 I was told I probably would not be able to get on a transplant list.

@kamama94 Your experience accurately reflects what I have heard from others! That is one of the downfalls of having hemodialysis in-center. Your body accumulates toxins and then has to be cleaned out. Both of those situations are hard on you and if your health is already compromised, it is even more so. While I do not have any experience with dialysis at this point, my husband was on peritoneal dialysis for over 5 years before his transplant. He did not have any comorbidities. For him, the nightly cleansing of his system kept his energy much more consistent and his Outlook was very even. I think as kidney patients in general, we often think this is the end of our life as we know it. Realistically we have to adjust to a new way of living.

When I lived in Southern California I was an active participant in monthly kidney support group meetings, as hosted by rsnhope.org. There we had several participants who were seniors plus. We had people who received transplants in their 70s. I do believe the criteria is based on the health of not only the patient but of the donor. Many transplant centers these days are finding that seniors do have quality of health to handle a transplant. At the same time I know of people who have been on dialysis for decades by choice.

I hope that each day when you arise you are feeling well enough to continue that day! It's never any fun to have a chronic condition and twist your life around to favor it. Sending gentle hugs and support.
Ginger

The battles continue. I wonder what's next or have all the shoes dropped by now?
Can't get permacath wet so no showers allowed, only sponge baths/chair baths. Arm graft won't be ready to use until the first part of Dec so have to continue dialysis via permacath til then. But Medicare will only pay for 2 more weeks of nursing help with bathing. (No help needed with shower but must have help with sponge bath and never mind the details, LOL.) So what am I supposed to do for skin care for 2 weeks when Medicare certification runs out? So far nobody has an answer for that except that horrible phrase "nursing home," which I absolutely will not do.
Yet ADLs are a constant struggle - managed to wash towels and cloths yesterday, will try to do clothes today. Docs and nurses say energy will improve but other patients say no. I want to believe the former but logic tells me listen to the latter.
Thank goodness for Hy-Vee's already prepped/peeled/etc. fresh veggies, they make fixing meals so much less work even if a bit pricier than doing all that peeling and slicing on my own.
So in spite of all the glitches, today's a good day to live.