No energy

[Andysax]

I am 57 end stage kidney disease awaiting to start dialisys can anyone please tell me will i have more energy and be able to do the most simple things again without feeling out of breath once i start my dialisys just walking to the bathroom is an efvort at the moment

[Darlenia]

Hi Andysax. I feel for you. I'm a caregiver to my husband and speak from that perspective. (He's actually sitting next to me so he's providing input.) My husband went on dialysis recently...on June 8, so we're entering our 4th week. We were at the hospital for a transplant consultation and were completely blindsided by his soaring blood pressure leading to his instant hospitalization for dialysis. So you do have a wonderful opportunity here to prepare for upcoming events which we didn't have. Like you, my husband (70 yrs old) was exceptionally tired, and nodding off constantly. His appetite for food was slowing down too. It was an exceptionally difficult time for us. I'd walk, he'd shuffle. I'd tell him to pick up his swollen feet so he wouldn't trip. He'd stop, trying to catch his breath. I'd prepare meals, he wouldn't eat much. I'd say something, he wouldn't answer. When he talked, his voice was raspy. He was up all night...going to the bathroom, having restless legs, etc. Instinctively I knew he needed dialysis...the downward slide was apparent. And that's exactly what happened. I wasn't allowed to see him at the hospital because of the pandemic. But I immediately noticed, following dialysis, that his voice improved. He actually "liked" some of the hospital food. Hemodialysis (three sessions in the hospital with lengthening time span is standard here) immediately lowered his high blood pressure, but it increased his restless leg problem. So treatments were put into place to combat the latter. When I picked him up, I was pleased to see him take the initiative to walk smoothly from the wheelchair to the car. And that has slowly but surely improved. Hemodialysis can contribute to anemia (which exacerbates fatigue and possibly restless legs), and now iron is infused during his treatments. We started to walk around the house, then the neighborhood block, and finally made it around the block 3 times yesterday. We hope to walk 2 miles a day eventually as his feet become less swollen and his anemia goes away. We are aware some things will clear up quickly, others will take a little more time. But we both see that dialysis has made life better for both of us...his night time wanderings are also diminishing, his appetite is definitely returning, etc. My problem now is that my husband is somewhat depressed with the large chunks of time that hemodialysis takes out of his life, so we're looking to switch to night time peritoneal dialysis as soon as possible. And we are both aware and grateful that transplants are now possible for"seniors" if they meet transplant criteria. So stay the course, you will improve and have a wonderful future if you look forward. Slowly but surely, I am seeing that unfold now. Hope this helps!

[Jayhawker in reply to Darlenia]

Thanks for this encouraging post🐶

Jayhawker

[steve680 in reply to Darlenia]

"Hemodialysis creates anemia" - this is a false statement. What creates anemia is the kidneys failing to make enough of a hormone which stimulates the bone marrow to make red blood cells. Anemia should actually improve on hemodialysis because they put an artificial hormone in the dialysis fluid which goes into your blood stream. When I started dialysis my hemoglobin was at 7.0, it is now at 12.0 (the low end of normal is 13.5 for men).

Hemodialysis will also clear the toxins from the blood stream, and this in turn will give a person more energy. Dialysis will also clear excess fluid from your blood stream.

[Darlenia in reply to steve680]

My husband insists he's getting iron infusions in his dialysis treatment. He's also been prescribed iron supplements. According to kidney.org it may be due to this, "In fact, when you are on dialysis, you will probably need extra iron because you will be taking another anemia medicine, called ESA..., that uses up your iron." I totally agree with you that anemia likely starts before dialysis for most so will change my statement above from "created" to "can contribute". Btw, thank you! Input is good!

kidney.org/atoz/content/iro...

[steve680 in reply to Darlenia]

Dialysis will actually improve anemia because of the drugs you are given while you're connected to the machine.

[DarbyWills in reply to Darlenia]

All is good! Point of clarification for the kidney disease medgeeks (we all are lovingly called that I guess aren't we in the room), ESA is an acronym for erythropoietin stimulating agents drugs like Epogen, Procrit or Aranesp here in the USA that are being given to help stimulate new red blood cell production and correct your husband's anemia. Iron is needed by the hormone Epo to work the best. As described by others erythropoietin or Epo is a hormone created by the Kidney. In end stage renal disease kidneys no longer function well and the hormone is not secreted effectively to help the bone marrow make sufficient red blood cells causing the term anemia.?

can weaken your stamina and make you abnormally chilled when you have it.

[Andysax in reply to steve680]

Thanyou that was very helpful cheers

[Andysax in reply to Darlenia]

Hi Darlena

First of all thankyou for your reply it has given me a real lift

I was starting to get very disheartened i am at kidney funtion level 9 now and constantly struggling with the most simplest of tasks .

Ive always been a very active person and serving my coubtry for years in the army and i am so frustrated

I keep saying to myself how cruel to keep me waiting to start dialisys but my doctor sais i should wait till my fistula is 12 weeks and or i reach leveln7.

I also now have water retention which im just getting undet control and breathing difficulties at times.my legs ache in the morning with a burning sensation i am a fighter but sometimes feel like its a ver ending battle

Oh how good for paracetemol without them would be terrible.

Your letter to me was a lift and more than i have been told from any of my consultants.

Im 57 so much left to do in life and feel that a new better chapter is waiting for me just around the corner

Many thanks

Andy x

[Darlenia in reply to Andysax]

You are very welcome. My husband is even better today, a Sunday. He ate nutritiously and well, we went on a "joy ride" to check out a lake, returned home where he took only one brief nap (no nodding off all day as in earlier times). Then he worked on transplant paperwork, and now we're about to go walk. We are almost one full month into this now. Expect glitches - his temporary catheter needed to be exchanged this past week requiring a brief hospitalization. But remember most problems are correctable. One's kidneys can fail, but technology has stepped in and it's been a life saver. You will get your life back.

[Cazzy41]

Hi Andy. I was on dialysis for just over four years, but my age was considerably younger than you. I was 37. I am a single mum to two boys who have their own complex health needs. I managed to do my session every other morning for four hours and then go home do my grocery shopping and all the normal running of a home things.

But listening to other patients who were older I heard a lot about how tired they were and how they would go home and sleep. But you need to remember everyone is different, and you may feel a bit lethargic however if you have felt really poorly due to your kidney disease you May feel totally rejuvenated and full of life.

All I can advise is take everyday as it comes and don’t try pushing yourself if you don’t feel up to it. People do not understand how draining ( no pun intended) sitting at a machine doing nothing or even doing things like work or reading a book can actually be. You have to experience it to fully understand the situation. Unfortunately no matter who you askin your renal team unless they have been on dialysis they cannot truly explain the whole experience. Just remember your there to give you a better quality of life and you know you best. Ease into it and listen to your body it is the best guide you have.

Please keep me updated as I am really intrigued as to how you find the entire thing that is dialysis. Good luck you will be fine you really will xxx

[Andysax in reply to Cazzy41]

Thank you again this as been so helpful as explained in my reply to Darlena i have been given a lot of hope reading your comments every day is a struggle at the moment frustrating after leading a very active life

I am at level 9 at the mpment been told to hang on untili reach 7 but got to the stage now i wish they would just start me on it

Some very helpful people on here

Many thanks

Andy

[Cazzy41 in reply to Andysax]

Many people just want to get started and get that first session over with, and I’m sure if you tell the Renal team that they may take that under advisement. But sending you loads of love and positive energy. You will be absolutely fine I promise x

[Jayhawker in reply to Andysax]

Andy, I’m struggling along in Stage V now too. I’ve been I. stage V since the first week of January 2017. I wanted to share a post from a person in this forum that I have hound so encouraging.

Jayhawker

——————

Dialysis Comment:

“You’ll never make a change in your life until you accept the place you’re going is better than the place you’re at. That applies to everything in life. Yes it’s scary but try to think of the good. I’ve seen so many people on here who’ve gone on dialysis and they feel BETTER! Try to think of it as a new beginning, a second chance. Because as bad as this disease is, we have a backup . Most diseases don’t have that option.”

[Tissybell]

I have been on PD at-home dialysis for 1 year and 9 me nths, and I have felt better since then. Pre-dialys s, I had a GFR than was dipping quickly, and I was fatigued, cold, had poor appetite,and difficulty concentrating. When I was told I would have weekly testing, I opted for dialysis to avoid being critically ill in the hospital. The 2 years before, I had gotten training at DaVita, and from a Fresenius nurse twice. The nurse told me the effects of dialysis, and info was favorable. I do work part time as a Medicare Sales agent, and the work is flexibleo. I just started counseling al with many medical and I do have more energy, as long as I have good iron levels.d. I have monthly injections of Mircera for that. Seek out help and take. Take one day at a time.time, and Good Luck.