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Author Topic: I do not understand  (Read 2303 times)
southyard
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« on: September 27, 2008, 12:40:28 PM »

Since I've been on dialysis I seem to be more tired. I sit on my recliner to watch the news etc and fall alseep 95% of the time
WHY?

I admittedly do not follow the prescribed diet as I have given this treatment a 6 month trial.  Now on 3rd month.

Also I admit to not fully understanding the malady I have.  At my age I do not wish to continue on.  Any help with this problem/desire?


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monrein
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« Reply #1 on: September 27, 2008, 01:24:53 PM »

I felt sad when I read your post Southyard but I do understand how you might feel like giving up since you're not feeling better since starting dialysis. 

Tiredness, fatigue and lack of energy are part of our illness and for these to improve we have to get rid of the toxins that build up in our bodies.  Dialysis is how we get rid of them since our kidneys no longer do the job of filtering them from our blood.  Toxins come from the natural processes of cells breaking down in the body AND from the food we eat.

Twelve hours of dialysis is really the bare minimum and if you are ignoring the renal diet and piling on the toxins then even with the dialysis you are likely still circulating many toxins in your blood and it is all this poison that produces our symptoms, like tiredness.

You also may tire more easily because of your age and many of us who have this disease can and do become depressed, which can also make a person feel like sleeping all the time.

I think it's a fair approach to give the treatment a trial period but the diet is as important as the sessions so your trial isn't a true one.   It's like test driving a car with water in the fuel and the emergency brake on.  You probably wouldn't buy the thing and who could blame you?   

Do you have a dietician who could help you with the food part of things?  Ask your team to refer you to one.  Get them to help you figure out exactly what to eat, how much and also which cheating on the diet is better and which is really harmful.

Could you also speak with a social worker about how best to plan for giving up if that is what you decide is best for you after all else fails? 

There's a lot that we need to know about this malady and even that fact can be so overpowering.  I wish that I could come to your house and have a chat and a half cup of decaf coffee with non-dairy creamer (that darned diet follows me everywhere I go).  I'd be so interested to hear about your life.

In the meantime I send you a big hug.   :grouphug;

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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
willieandwinnie
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« Reply #2 on: September 27, 2008, 01:27:43 PM »

southyard, dialysis cannot totally replace your working kidneys. Some toxins don't get removed as easy as others. You should ask your Dr. if they are drying you out too much, and also I'm going to assume (please correct me if I'm wrong) but your probably not a real big eater, are you? You should eat whatever you want in moderation. My husband was never really on the renal diet because he was so malnourished and all his numbers were in the toilet. Not all renal patients are equal and that is one of the problems with clinics and their cookie cuttie treatment. My hubby always napped after dialysis but the next day he would be better and would only take small cat nap mid-day. I read where you are going to have a birthday soon, and I just talked to my husband about you and he said, he completely understands where you are coming from. He was 52 when he became critically ill, he woke up after 6 months in the hospital on a ventilator and dialysis and was so pissed at me. He never wanted to be kept alive in that fashion. It sounds like your family understands your wishes and you should give it the 6 months and see if you feel any improvement. Remember, were here for you.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
flip
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« Reply #3 on: September 27, 2008, 06:13:51 PM »

It takes a little while to adjust to dialysis. It also takes time to tweak the process as far as machine settings, blood flow, etc. Your monthly labs should tell you if your diet is okay.

Hang in there, everything will be okay. If I had to sit in my recliner and watch the news, I'd probably fall asleep too.
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kellyt
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« Reply #4 on: September 27, 2008, 06:21:29 PM »

It takes a little while to adjust to dialysis. It also takes time to tweak the process as far as machine settings, blood flow, etc. Your monthly labs should tell you if your diet is okay.

Hang in there, everything will be okay. If I had to sit in my recliner and watch the news, I'd probably fall asleep too.


I was thinking the same thing, Flip!   :rofl;  Actually, my thought was (of note I'm predialysis and don't have any clue what you guys are going through) that just sitting in a chair, not being able to get up and/or move around AND watching the news would probably put me to sleep, too!   :rofl;

Hang in there Southyard.  My heart and thoughts are with you no matter your decision.  I pray your next three months are GREAT!!!!!!!!   :cuddle;   Keep us posted!
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Lori1851
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« Reply #5 on: September 27, 2008, 06:24:14 PM »

Are they giving you Epogen during dialysis? Are you anemic? I know my son was and was tired a lot also.

Lori/Indiana
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G-Ma
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« Reply #6 on: September 27, 2008, 08:21:36 PM »

Hugs to you Southyard....I think we all know how you feel, have been there many times.  Yes, give it a trial if you wamt bit be honest to yourself and do your required dialysis and as close to the renal diet as possible.  I know..trust me I know we all "cheat" on our diets but we still work on being close to requirements.  All my life I have been able to fall asleep sitting in a recliner or on a footstool balanced on a highwire but when I go to bed I can't sleep..go figure, and depression or toxins can both put you to sleep in a hurry.  Give it a real try and then make your decision from there.  We are all here for you.
Ann
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
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okarol
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« Reply #7 on: September 27, 2008, 11:15:29 PM »

 :cuddle; southyard

Take care.  :)
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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