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Author Topic: Does it get any better?  (Read 3181 times)
vcarmody
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« on: September 28, 2009, 09:21:58 PM »

My husband had his first dialysis treatment on Friday. Saturday he woke up in sever pain, we think it may be gout in his left knee, Sunday it got so bad we went to the ER and they did not even look at his knee.  The doctor got so hung up on the swelling in his leg that he only did a doppler looking for a blood clot, which of course he did not have (we told the doctor he just had a doppler a few weeks ago).  It is really horrible he can not bend his knee and he is in so much pain, so I took him to his primary doctor who then sent him for x-rays (if the hospital had done it the night before they could have saved him all the extra pain he had to endure today getting to the car and then having to get in and out six times).  When we finished he got to rest about and hour before he was off to his second dialysis treatment.  I'm not up on all this dialysis treatment stuff,  but I guess they left him on to long so he started getting real bad charlie horses in his legs, they stopped the dialysis and then gave him fluids.  His treatment ended around 8 PM around 11 he stated vomiting, he says he is feeling better but I am really worried, he seems so out of it, and so exhausted.  He made  comments saying how this was his worse day ever, and if this is the way it is going to be he don't want to live like this.  Can anyone tell me if this gets any better, or any suggestion on how to make it better for him? 
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Caregiver to husband Chris, NxStage 11-2009
sico
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wheres my bike gone?

« Reply #1 on: September 28, 2009, 10:29:02 PM »

That knee sounds painfull.
I'm guessing your husband is on HD? That did knock me around in the beginning. Should get better. Takes time for your body to get used to it.
I was probably lucky in a way being bed ridden for my first 4 HD treatments. Never vomited though.
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Brad      "Got myself a one way ticket, going the wrong way" - Bon Scott

6/11/08 diagnosed with ESRF, dialysis that day

HD and PD

8th of April 2010 Live kidney transplant from my father.
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #2 on: September 28, 2009, 10:31:34 PM »

It absolutely gets better.  You poor things going through all this.  But, you do get what I call 'dialysis fit'.  Like anything in life, your body starts to adapt.
I had the same problems when I started haemo (I'm now on PD and much prefer it).  But I did get better at it.  Good luck for the next one.  Did they start him on lesser hours?
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
Ang
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« Reply #3 on: September 28, 2009, 11:17:10 PM »

treatment  usually  does  get  better  after  a  fortnight/3 weeks as  long  as  there  are  no  other  pre  existing  illness.

not  sure  what  the  knee  is  about,


cramping  in  the  legs  is  usually  down  to  too  much  fluid  being  removed  during  treatment,you  have  to  keep  the  fluid  to  a  minimum,so  you  can  bypass the  cramps  hopefully
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live  life  to  the  full  and you won't  die  wondering
Goofy
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« Reply #4 on: September 29, 2009, 04:34:00 PM »

And people wonder why I don't want to start dialysis.  Go figure!
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willowtreewren
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« Reply #5 on: September 29, 2009, 04:54:41 PM »

Goofy, not everyone has a hard time. My husband started dialysis and almost immediately started feeling better and better and better. Now he feels great! Lots of energy, good color and no one would ever know anything is "wrong" with him.

For some it takes a while to work out the dry weight and how much fluid to pull off.

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
RichardMEL
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« Reply #6 on: September 29, 2009, 07:48:27 PM »

Yeah I agree. Goofy don't use "horror stories" as yet another excuse to not start. Everyone is different. I had very few problems.. indeed have had few over 3+ years. Having a few ups and downs at the moment, but we're working on it and hopefully come to a solution soon :)

As for the OP... YES, it does get better - absolutely. Your husband needs to stabalise and that includes working out hiw appropriate dry weight - if he cramped up so badly that suggests they took too much fluid off, and his DW is set too low, and it needs to go up. There are several things that can be done to get a better idea - like a "BVM" measurement on the machine to see if he is refilling enough which gives an indication of how "wet" or "dry" he might be. Another thing is to do one of the special scales that measure water % in the body.

In the end though it is a bit hit and miss - specially at the start.

It seems contrary though that he has swelling in his legs which suggests excess fluid, yet he's cramping with dialysis.

I certainly hope things settle down soon. It is not fun I think we can all understand that. Fingers crossed!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Rerun
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« Reply #7 on: September 29, 2009, 10:55:55 PM »

We call them cramps!  It feels like you have been kicked by a horse named Charlie!  It will get better, but you and your husband need to get on this site and read, read, read!  You need to learn about his "dry weight" and take control of this situation because the Techs are just guessing and they don't care that you are sick at midnight because they are in the bars!
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billybags
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« Reply #8 on: September 29, 2009, 11:06:43 PM »

Oh vcarmody, Sorry your first session was not good. It will get better. I remember my husbands first few sessions on hemo, he was so tired all the time, he would come home from the unit have lunch and go to bed, get up have dinner and go back again. He thought "is this it".Two months down the line he is out digging the garden, he has so much more energy and you will be the same. It takes time to sort your bodies needs out with hemo. You will get cramps, tell your tec, you may get head aches, you will get frustrated and angry it goes with the territory. Come back and tell us how you are feeling, ask questions.
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KICKSTART
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« Reply #9 on: September 30, 2009, 03:05:57 AM »

We call them cramps!  It feels like you have been kicked by a horse named Charlie!  It will get better, but you and your husband need to get on this site and read, read, read!  You need to learn about his "dry weight" and take control of this situation because the Techs are just guessing and they don't care that you are sick at midnight because they are in the bars!

I was once kicked by a horse called Charlie !  :rofl;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #10 on: September 30, 2009, 02:27:03 PM »

Am I allowed to ask Kickstart if you've been back on a horse yet?  I know it's off topic but we were talking about horses called Charlie...lol.  I'm gonna come riding with you if I ever get to England.  I'm a horse person too - well, I was, for years when I was younger.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
beachking
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« Reply #11 on: September 30, 2009, 09:10:47 PM »

get  a better more experienced Doctor
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KICKSTART
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« Reply #12 on: October 01, 2009, 02:45:38 AM »

Am I allowed to ask Kickstart if you've been back on a horse yet?  I know it's off topic but we were talking about horses called Charlie...lol.  I'm gonna come riding with you if I ever get to England.  I'm a horse person too - well, I was, for years when I was younger.

I rode all through PD (well mostly) however since ive had my tunnel line in for hemo i havent dared risk it ,for fear of coming off and damaging it. Im not sure if i will be able to ride again once i have a fistula made as it will put quite a strain on it , but knowing me i will probably try ! Nice to know theres another horsey person around !  :thumbup;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
vcarmody
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« Reply #13 on: October 01, 2009, 12:44:37 PM »

Thank you all for your post.  His last session was better no cramps, he was wiped out but he seems good today.  As far as his knee goes it seems to be getting better, possibly an attack of gout even though his Uric Acid is within normal limits.  Now I just need to find out what dry weight and what his is and go from there.  You all have been very helpful. I am sure I will be spending a lot of time on here learning every thing I can about my husbands illness and dialysis.   :thx;
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Caregiver to husband Chris, NxStage 11-2009
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