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Offline PastorJeff

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Pain management
« on: October 26, 2018, 08:51:44 AM »
One of the things I don't recall being counseled about in the lead up to surgery is the possible impact on pain management later on in life.  My remaining kidney never came back beyond a creatinine of 1.46 which put me in the CKD3 category. This past year I have developed painful sciatica and even neuropathy in my feet.  I am 66 and don't believe they are related to my donation 6 years ago.  What is related are my options for pain management are more limited some due to my one kidney.  Others due to my remaining kidney function which thankfully is quite stable..   Of course, no NSAIDS. Also I can only take limited doses of other drugs that might otherwise be helpful.  Even in testing there are extra precautions especially when there needs to be contrast. I have gone through all the PT, Accupuncture, Spinal injections, etc which have been of very limited help.  My point is when considering being a living donor you need to factor in possible limitations such as this later on when you are not so young and spry.  I would still do it again.  The blessings have outweighed the sacrifice.   

Offline Michael

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Re: Pain management
« Reply #1 on: October 26, 2018, 09:00:44 AM »
Jeff,

Thanks for sharing your experience. We all hear about the need to restrict use of NSAIDs after kidney donation, but we don't hear much about the impact on the use of other medications. John ("Clark") recently posted a message about the potential dangers of using supplements, as an example.

I need to update the information on LDO about NSAIDs so I'll be sure to add a comment about other medications, too.

I hope things get better for you!
Michael
Living Donors Online
Our mission: to improve the living donation experience

Offline Orchidlady

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Re: Pain management
« Reply #2 on: October 29, 2018, 03:01:34 PM »
Same issue here, Jeff, although not as bad as what you are describing. I have issues with arthritis in a hip and my knees. The only thing that works and I can take is the Tylenol arthritis formula - seems to work okay at this point. A modest amount of excercise and gentle yoga also seem to help. I just hope I don't get it anywhere else. I know what you mean - I never thought about this years ago when I donated. You never imagine that it will happen to you!  Hope you are able to find some form of relief.
Donated Left Kidney to Husband 10/30/07
Barnes Jewish Hospital
St. Louis, MO

Offline sherri

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Re: Pain management
« Reply #3 on: October 29, 2018, 06:12:23 PM »
I did think about it and also ruminated about what happens if I get a cancer diagnosis and have to do chemo and won't be able to tolerate the full dose (will I be at a disadvantage). I guess we all think about it but hard to imagine 15 years down the road.

I also have the aches and pains, low back pain. I do heat and yoga, weight bearing exercise to help my bones. my dexa scan was positive for osteopenia so am trying to work on that. the kidney does a lot more than just clear waste products. and taking one out, as opposed to being born with one, I am convince is a lot different on the body. compensation must be a little more difficult.

Stay well everyone.

Sherri
Sherri
Living Kidney Donor 11/12/07

Offline misterflask

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Re: Pain management
« Reply #4 on: November 10, 2018, 08:55:43 AM »
  When I was in the workup process, I mentioned to my personal physician that I was considering donation.  He noted that it was laudable, but it would be the end of my NSAID use, which he knew was at least moderate.  I have osteoarthritis in my thumbs ( when it first developed I dropped a $7k GPS into the everglades while doing environmental work ) and NSAIDS were a constant companion for endurance cycling and backpacking.  So the idea of giving up NSAIDS was a real wet blanket on the idea of donation.  Fortunately, I stumbled on the following scholarly article from the NIH on the use of natural alternatives to NSAIDS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3011108/  or you can search for "Natural anti-inflammatory agents for pain relief - NCBI - NIH" .  I settled into the use of turmeric(curcurin) and green tea with good results. 

  Most doctors/nurses in the medical community won't even discuss natural alternatives.  Fortunately, the consulting nephrologist during my workup was Indian.  When asked about the alternatives I was using, she smiled and said "yes, use turmeric and green tea, it's been working in India for millenia".

  I am currently 1 month post-donation and don't have enough activity yet for my aches and pains to return.  But prior to surgery I experimentally gave up my NSAIDs and used green tea and turmeric for several months during heavy workout activity with what I found to be adequate results.  The NIH article cited is really down on NSAIDs and pretty much says we shouldn't be taking them anyway.

  The nephrologist would not give me hard guidelines, but said NSAIDs could be used occasionally and low-dose aspirin was OK for cardiac protection.  So between the natural alternatives and the potential to use a few NSAIDS in a pinch, I think I will be OK.

Offline Fr Pat

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Re: Pain management
« Reply #5 on: November 10, 2018, 07:24:14 PM »
Dear Sherri,
     Hi. It would be great, I think, if you could also post this at the Living Donors on Line page at FaceBook. There are always LOTS of questions about NSAIDS there, and many folks who check in there don't check in here.
    Fr. Pat

Offline sherri

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Re: Pain management
« Reply #6 on: November 13, 2018, 04:10:46 PM »
Hello Fr. Pat,

always nice to "hear" from you.  You have been a longtime member of this group and always appreciate your input.

I know the facebook group is more popular but I really miss the warmth and closeness of the forum. Alas, we all must move on with change, but sometimes I just prefer the good ol' days.

And Orchid Lady, congrats on the recent kidneyversary. I know that you were just a couple of weeks before my donation. Just celebrated 11 years on 11/12/2007.

all the best to everyone,

Sherri

Sherri
Living Kidney Donor 11/12/07

Offline PastorJeff

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Re: Pain management
« Reply #7 on: November 29, 2018, 07:31:53 AM »
Hello all,

We have "moved on" in the area of pain management.  I have been keeping the medical industry employed over the last 6 months as we have sought to mitigate my sciatic pain in my left leg.  In the meantime we have discovered I have neuropathy in my feet from an unknown cause.  So I have been treating the symptoms of that and now shifted my fitness activities to swimming which is great if i don't watch the real swimmers in so much better shape.  Well anyway we have decided to go forward with a surgical option for my sciatica.  A partial decompression, if you know about such things.  Otherwise I live with the pain which my wife is much better at living with me.  I don't imagine this surgery to be as complicated as taking out a kidney  :)

 

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