On dialysis for five years or more please answer a few questions

[kitkatz]

Congratulations, you have outlived the dialysis mortality rate figures! 
I am doing a little research on long-term dialysis patients over five years on dialysis.
Please answer these questions:  (Your answers are anonymous and will only be used in my case study.)

How long have you been on dialysis?
What type of dialysis are you on?
Graft, fistula or PD?
Time on dialysis per treatment?

Have you had low or high blood pressure problems?
Do you have problems with your heart? If so what is it?
Have you had intestinal problems?
Mobility problems?
Muscle aches? 
Blood work issues?
Depression?  Mood changes?
Are you on the transplant list?

How do you feel about dialysis over all after being on it as a long term patient?

[Charlie B53]

How long have you been on dialysis?  A little over 6 years already.

What type of dialysis are you on?    I started on PD end of may 2014 and did very well once we got my program adjusted.  Near perfect labs. Until an infection from Hell for 3 months caused my switch to Hemo on a cath Dec 6 3016.  Shortly after I had a fistula created in my left bicep which took nearly a year, a revision and a couple of angioplasty's before we were able to start using it.  Diet and fluids were difficult at first but I soon learned and adjusted. My Labs are near perfect again except my phosphorus can sometimes get a bit high as I often forget to take my binders when not at home.

Graft, fistula or PD?  PD at first then Fistula

Time on dialysis per treatment?  4 hours running

Have you had low or high blood pressure problems?  LOL  Initial standing after treatment often drops into the 80's but I don't feel anything different.  My Nurse/Tech readjusts the cuff, retakes and it is in the 130's.  I  don't understand why it does this.

Do you have problems with your heart? If so what is it?   I had a Triple By-Pass in '06.  I had a potential Widow Maker, the large artery feeding the whole back side of my heart was very bad.  Fortunately we found it before I had anything more serious than extreme tiredness.  It was also noted I had a congenital defect, a 'shunt' that recirculated blood from to heart outlet back around and into the inlet again.  The Surgeon told me he removed it.

Have you had intestinal problems?  None known

Mobility problems?   I have permanent injuries to left ankle and right knee during Service in the Army and the VA takes very good care of me.  I have had a blood clot in the right inguinal artery and ws within hours of losing the whole leg.  The VA Vascular Surgeon got it cleared, 5 days in ICU.  Since then I have had a number of stents placed in both inguinals to restore good flow to my legs and I can walk again, for a bit.  100 yards or so then the buttocks start screeaming and burning, my steps shorten then all stops and wait for the blood flow to catch up in the buttocks.  Then inguinal stents allow flow to the legs but they cannot restore flow to the buttocks which does make movement very limited.

Muscle aches?  Leg cramps.  Nearing much over 2 1/2 K's my calves begin to cramp while on the machine.  If I put them down from the reclined position it is better but later during sleep they will cramp within 2 hours and I got to get up and walk to free them up again.  Go back to bed and it repeats again in another two hours.    There are many days that I also get cramps in my thighs.  It doesn't make a lot of sense.  They can be a Bitch.

Blood work issues? I am careful what I eat and how much I drink so my Labs are generally very well within range.  It ain't always so easy, you gotta be tough with yourself.  We can taste, just cannot eat very much of a lot of things.

Depression?  Mood changes?  Because of my Military Service I have been pretty much of a Loner.  I don't do crowds.  I don't like too many people. With my Wife in the Nursing Home for the last year it has just been me and the Cat.  My Dog defected, decided he wanted to live with our Daughter more than he wanted to come home with me.  Since He seems much happier there I leave him with her.  I live much like a Hermit.  No Energy, no drive.  I go out for treatments, go to the store oly when I need.  Seldom even get out and mow the yard.  I often wonder how much depression is involved as I am SURE
that all of us have a certain amount.  Many of us handle better than others, but there has to be some baseline amount.

Are you on the transplant list? No.  Smoker 50 + years. Arterial clogging.  Dr;s recently started me on Warfarin hoping to prevent further clogging/clotting.

How do you feel about dialysis over all after being on it as a long term patient?

[Michael Murphy]

Time on dialysis 7.5 years
Fistula named Lumpy
Time on treatment 4.5 hours
Used to be high, occasionally low, after large heart attack fall of 2016 began to have weight loss issue went to cardiac rehab lost weight, my dry weight was not adjusted down so I was not removing enough fluid, began to suffer congestive heart failure. During the period of adjusting my dry weight occasionally had low blood pressure.
Two heart attacks one fall of 2008, one fall of 2016 ( 2 angioplasties, released in about a week), let out returned to dialysis clinic on the way out to my car could not breath,after a day in urgent care it turned out to be v-tach and afib, back to hospitals 7.5 hour operation for abalation and icd implant. Still recovering.
No gut problems.
The week after 2016 heart attack was scheduled for knee replacement on both knees.  Real mobility issues going back to see if I am still eligible for replacement surgery.
Muscle aches, just what any 68 year old should have..
Last year binged on bananas raised my potassium levels high enough to cause my icd to fire 3 times. Spent next week in hospital having extra dialysis and drugs to remove potassium.
Depression, yes and no.  In 2016 I had a couple of bad days during the heart attack when I was unable to walk the 8 feet from my bed to the toilet.  Not a good life if it continued.  The I realized I am a dialysis patient and if it stayed bad I could just stop dialysis.
My mood improved and I began pushing my recovery realizing that if I was unhappy I could just stop Dialysys and give up.  I actually be gan to enjoy the recovery.
No every year I have one or more melanoma removed from my back as a child my parents would send my very white body out into the sun because it was good for me to sum it up I went from neon white to neon red and returned to neon white with amazing frequencies for about 5 to 18 years old. So the melanoma precludes any thing that requires immune suppression.
I wake up walk on the right side of the grass, I have a good life and when I don’t no more Dialysys.

[kitkatz]

Thank you.  I appreciate your answers. 

[cassandra]

Hi been on D too long 


2 yrs HD, before my dad’s kidney (13 yrs) then 5 yrs PD, 16 yrs HD, fistula. With HD I do, and always have done 2,5 hours. Had both high bp problems, and low bp probs. Doesn’t seem to be related to anything.
My heart seems to be okay, but awaiting op for central stenosis. Calcification appears to be normal after longterm D.


Yes to intestinal problems, but after excluding all dairy and milk products, it settled down a lot.


Yes to muscle aches, mobility problems after brain-haemorrhage after mistake with heparin as a kid.


Sometimes a bit depressed, but Diazepam (same dose, started on PD) relaxes the body and mind 😂


Not on transplant list at the minute as necrosis in olde fistula arm, and awaiting op central stenosis.


I feel okay with how my life turned out, it sounds daft, but I would not have met my hubby otherwise. It would have been great to have been healthy, but it wasn’t to be. It could have been a hell of a lot worse too.

[lulu836]

How long have you been on dialysis?
5 years last June

What type of dialysis are you on?
In-clinic Hemo

Graft, fistula or PD?
Catheter (on 3rd one now)

Time on dialysis per treatment?
3.25 with cathwash sometimes taking an extra 45 minutes)

Have you had low or high blood pressure problems?
High (now under control and without meds)

Do you have problems with your heart? If so what is it?
Ventricular tachycardia

Have you had intestinal problems?
No

Mobility problems?
For a very long time (cane, then walker and mobility scooter)

Muscle aches? 
Just back and torn rotator cuff

Blood work issues?
Potassium and phosphorus

Depression?  Mood changes?
No

Are you on the transplant list?
No

How do you feel about dialysis over all after being on it as a long term patient?
It's my 9 hour  45 minute per week job.  My clinic surroundings are comfortable and the staff is very knowledgeable and seem to be interested in their patients' well-being.

[jambo101]

How long have you been on dialysis?
6 months

What type of dialysis are you on?
In-clinic Hemo

Graft, fistula or PD?
catheter if fistula doesnt work

Time on dialysis per treatment?
4 hours
Have you had low or high blood pressure problems?
 constant low blood pressure
Do you have problems with your heart? If so what is it?
 no problems to date

Have you had intestinal problems?
minor constipation

Mobility problems?
Walking is becoming a problem 50 ft and i gotta sit down and rest

Muscle aches? 
no

Blood work issues?
Potassium and phosphorus

Depression?  Mood changes?
 depression and increased grumpyness

Are you on the transplant list?
yes

How do you feel about dialysis over all after being on it as a long term patient?

I hate it.

[kitkatz]

   I suppose I should answer my own questions.   

How long have you been on dialysis? Over 20 years
What type of dialysis are you on? hemodialysis
Graft, fistula or PD? Fistula
Time on dialysis per treatment? 6 hours three days a week

Have you had low or high blood pressure problems?  High and low BP, low now
Do you have problems with your heart? If so what is it?  I have a leaky heart valve and stenosis
Have you had intestinal problems?  Yes, intestinal perforation with temporary ileostomy.  Had reversal done six months later.  LOst six inches of intestines, including the valve between upper and lower intestines.
Mobility problems? Sciatica Using a cane when out and wheelchair at home
Muscle aches?  Yes all over body fibromyalgia
Blood work issues?   I am a hard stick to get blood.  Low calcium levels
Depression?  Mood changes?  Yes, due to meds.  Depression runs in my family. so hello.
Are you on the transplant list?  No not eligible  Permanent dialysis patient

How do you feel about dialysis over all after being on it as a long term patient?  I hate dialysis.  It sucks, but it does help keep me alive.

[KatieV]

How long have you been on dialysis? Off and on since 2007 (transplant in 2008 and 2013)
What type of dialysis are you on? Currently HHD with NxStage
Graft, fistula or PD? Fistula
Time on dialysis per treatment? ~3.5 hours 5x a week

Have you had low or high blood pressure problems? High - on 3 different BP meds
Do you have problems with your heart? If so what is it? murmur, but no doctor has been concerned
Have you had intestinal problems? Lost 30 lbs in a month due to toxicity from Myfortic
Mobility problems?  Avascular necrosis of the hips from steroids
Muscle aches?  yes
Blood work issues? Phosphorous runs high, PTH is sky high even with 180mg Sensipar.  Parathyroid surgery scheduled for 9/3/19
Depression?  Mood changes? Not usually
Are you on the transplant list? No.  Local surgeon won't approve me.  Working with a long-distance hospital, but need to bring a living donor into their program with me.

How do you feel about dialysis over all after being on it as a long term patient? Dialysis sucks, but it keeps me alive. 

[Riki]

How long have you been on dialysis? 15 years
What type of dialysis are you on? In-center hemo
Graft, fistula or PD?  Fistula named D.J. (Double Jab)
Time on dialysis per treatment? 4 hours

Have you had low or high blood pressure problems? I seem to go in stages between high and low.  I currently only have low pressures when on the machine, but they are normal any other time
Do you have problems with your heart? If so what is it? I'm told that I have a moderately leaky heart valve
Have you had intestinal problems? No
Mobility problems? Yes, but they are not dialysis related
Muscle aches?  I have arthritis in my neck, and other aches and pains normal to a 41 year old
Blood work issues? None that I know of
Depression?  Mood changes?  I am in early menopause.  I ride an emotional rollercoaster daily
Are you on the transplant list? No.  Being short and fat makes you ineligible

How do you feel about dialysis over all after being on it as a long term patient?  It's a pain in the butt, quite literally.  I would love to design a chair that's easier on the back and the behind than the ones that we use now.  Other than that, dialysis is a routine thing.  Some people go to bingo a few times a week, I go to dialysis a few times a week.  We both come out a few hours later a little lighter, just in different ways.

[SweetyPie]

Been on dialysis for 9 years
Pd- 6 years 10 hours per day HD- permacath 3½ hours
Low blood pressure
No heart problems (thank you God)
No intestinal problems
No mobility problems
No blood work issues
Depression after I got a transplant but still had to attend dialysis treatments (restarted dialysis this September after a 2 week break)
No not on the list now

I used to not have problems with dialysis. I said it was just something part of my schedule. Ever since the transplant surgery and still having to go back to dialysis its been hard. I am still recovering and uts physically draining me. Its tough