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Author Topic: I hate going to dialysis, harder to go every time  (Read 5979 times)
darmstead38
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« on: July 19, 2013, 09:11:31 AM »

Been on HD for 13 years, (two years on PD)...I hate it. I am been to 25 appointments to get approve for transplant....(not yet)....I miss too many dialysis appointments and that is affecting my qualifications for transplant (but I hate dialysis, that's way I want a transplant)....I am on prozac, hopefully that would help,....but god I hate dialysis....
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David
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us and fam easter 2013

« Reply #1 on: July 19, 2013, 09:18:17 AM »

Well!!!!!!!!!! Mostly, i can say that i hope for a transplant to come through for you real fast!  Lots of good stories of others here thinking it would never happen, and then  it did and they are now doing so well!!  I hope this is your fate as well  :flower;  Dialysis sucks, and though im not the one on it, im just as 'tied' to that machine as hubby.. We do it at home and though it's been great!, it's a whole lot more D time of which, well sucks! 
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
skg
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« Reply #2 on: July 19, 2013, 10:01:37 AM »

If you are taking medications to help with depression something to consider is whether a different medication might work better. I have been on and off different anti-depressants for decades -- and some work better than others (for me). Trying alternatives or even different dosages might be worthwhile.

cheers,
skg
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lmunchkin
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"There Is No Place Like Home!"

« Reply #3 on: August 08, 2013, 08:23:26 PM »

Welcome to IHD.  Yea, John hates it too.  He's not even eligible for a transplant, but he does dialyize when he suppose to.

Again welcome & God Bless,
lmunchkin
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
Hemodoc
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« Reply #4 on: August 08, 2013, 09:28:56 PM »

Sorry to hear of your troubles. I did in-center dialysis for two years and did not like it. I have been on home hemo now for over 4 years and it works well, I feel much better than in-center. Many countries use the home hemo as a bridge to transplant. If that is a possibility, it could greatly improve your chances of a transplant as well.

I hope you find a good solution, but skipping sessions as you know only compounds the problems. Yes, transplant units do take this into consideration. I hope all works well for you.

Hang in there, things can get better and hopefully soon.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
ianch
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« Reply #5 on: August 08, 2013, 10:42:20 PM »

Hi darmstead38, some good advice here.  Yes I hated it too with in-centre so I totally understand where your coming from.  I am also on HomeD almost 1 year and totally recommend it.   Try and push for nocturnal as this will really change things for you.  The longer the session the less pressure on your body and therefore less post-treatment complications, plus your sleeping so its not boring. 

I should not admit this on here, but i like my big clunky machine :-)

 

 

   
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Ian Chitty
ESRD suffer, IT specialist, and business owner
(<2yrs) 1Y in-center, 9 months HomeD, 4 weeks tourism dialysis (Philippines/Singapore)

https://kiwimedtec.com
The aim of KiwiMedTec is to develop online solutions and partnered networks for dialysis patients, to make coping with kidney disease a little bit easier.
darmstead38
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« Reply #6 on: December 29, 2013, 02:41:23 PM »

Thanks..
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David
galvo
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« Reply #7 on: December 29, 2013, 03:40:52 PM »

13 years, mate! Yeah. You should have got used to it by now. I've only been on HD for 4 years. I manage by regarding dialysis attendance as going to work 3 days a week, and I love having 4 days a week to myself. I've even got into the habit of saying things like "Sorry, I can't do whatever, I've got to work that day". As a coping mechanism, it works pretty well for me. When I get the irrits about Dialysis, and we all do at times, I offer myself the alternative - Dialysis or Death! At the moment, I'll stick to Dialysis.

Now, darmstead, here's a job for you. With 13 years on HD you've got so much experience to add to our little family. You can be a reallly positive contributor. There are so many newies, and a few oldies, here that could benefit from your contributions.

Good luck and have a happy and positive 2014!
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Galvo
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« Reply #8 on: December 29, 2013, 04:15:17 PM »

Have you considered doing dialysis at home?   It sucks a lot less when the appointment is at your own house.
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Bill Peckham
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« Reply #9 on: December 30, 2013, 09:13:45 PM »

Dialysis hate comes in many flavors, what is or are the worst part(s) for you?  If anyone can understand, it will be the folks here on IHD, what's going on?


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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Dman73
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« Reply #10 on: December 31, 2013, 10:24:18 AM »

When I first started D in '73' I hoped that someday I would get a transplant and be off the machine. What made D difficult in the early days was that there was no EPO and your hematocrit ranged (17 - 20) which made you feel tired all the time. When I look back it is amazing what I was able to perform being 22 years old almost as well as my peers but with less energy. After 14 years I got the call to get a transplant.

The transplant worked for 1 day and then went into ATN (went to sleep) and I was back on dialysis. Three weeks later the Dr's were talking about removing the kidney but suddenly it started passing liquid gold. They would collect it in jars and put it on a table so they could display the content & color over time. They told me that if I was able to collect 1K cc's they would allow me to go home. The day came when I dusted my car's windshield off from being in long term storage at the hospital and started the 160 mile journey home with a new kidney.

Soon I was able to go back to work as a programmer, eat & drink anything I wanted and was able to go swimming, biking, and lift light weights. I even pursued my dream by getting my commercial pilot's license and when I drove to the airport would pass a dialysis center and say to myself 'not today but maybe some other time...'.
Over time (every three to 6 months) I would have my labs drawn and see my nephrologist.
My creatinine stayed rock solid at (1.2 - 1.4) and everything else was normal. Every morning when I left the house I would give thanks to be free of D but in the back of my mind loomed the thought that things could change.

After 14 wonderful years of having a kidney I was informed over the phone that my creatinine has risen and after having a retake confirming the result I realized that my dream had ended. They treated me for rejection with heavy doses of prednisone and I arranged to have a new fistula created. I took 9 months before I returned to dialysis.
Having that kidney fail was the the darkest, most painful experience of my life and the only thing that kept me going was that light at the end of the tunnel that old and familiar friend that I knew would be there ... that dialysis treatment. That is why that I'm thankful that I originally developed a comfort zone with D that would always be there in the future if necessary.

I find myself 13 years after the rejection still on D not in any hurry to get another transplant mainly because the cost of antirejection med's and the memory of all I went through after having that transplant fail. Who knows what's going to happen in 2014. 

Wishing everyone a Happy New Year...
 
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hd 73
tx  87
hd 01

by the yard life is hard by the inch it's a cinch...
galvo
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« Reply #11 on: December 31, 2013, 03:27:20 PM »

And a Happy New Year to you, Dman73. A great tale. Good luck to you!
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Galvo
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