Anyone experience pain at transplant site and beyond?

[olivia]

Anyone experience pain in their new kidney, at the transplant sight, or all over their bodies. I am told my pain comes partly from still healing, partly the way I walk ( protecting the surgery sight). I am beginning to think the medication side effects have something to do with it. Even though the transplant docs say nothing when I ask.
 Some days the kidney hurts a lot. Some days my knees hurt, or my back hurts, or my leg hurts, or my neck hurts. It is very frustrating. I thought I would feel better than this by now, I thought I would be up to doing more.
Thought I would feel more like a normal human being?

[kellyt]

I had pain at the incision site only.  I was told if I had any pain whatsoever in the "kidney" or surrounding area I was to call the transplant clinic immediately.  Now, having said that, I'm almost 3 years out and I occasionally get little pangs in the kidney area, but when I press on the kidney and surrounding area there is absolutely no pain.  My labs continue to be stable, so I'm not worried.  Maybe it's just the little bean reminding me he's there. 

Talk to your transplant doc.  Better safe than sorry.

[Ang]

As KT said above.

did you have any of this pain prior to transplantation?


make noises at clinic till you get a satisfactory result

[jbeany]

I had pain at the beginning, only it wasn't quite at the kidney site.  I finally figured out the problem - it was my bladder, totally unused to be stretched that way!  It did get better.

I just had hernia surgery, and I spent a great deal of time with back pain.  I was doing the same thing you are - hunching over to protect it.  Believe it or not, my best cure for that was the old beauty pageant trick of walking around with a book on my head.  After I did it for a couple of days - I stopped hunching and my back got better.

How far out from surgery are you?  Your body has been through some major trauma, so it's going to be on its own schedule to heal.  Also, the immunosuppresants pretty much double the amount of time you would have needed to heal from something compared to what you would have done without them.

 

[paris]

It took me a good 3 months to start feeling near normal.  People told me it would take a year to really feel like the old you.  They were right! It will be 1 yr Sept 1st and I finally have stamina, energy, don't fall asleep all the time, etc.   I do get pains around the kidney area. My surgeon said it was scar tissue and adhesions that are pulled at times.   I feel so good now. I had forgotten what "good" felt like!  I do have lots of joint problems and side effects from the anti-rejection meds.  But, I can live with that.     

Give yourself time to recover.  The surgeon told me for every hour you are in surgery and recovery, expect that many months to recover.  Your body has been through a tramatic event!    You are going to feel better.   

[edersham]

My first year was almost identical to what Paris described. I'm at 17 months now and it just keeps getting better.

Ed

[Chris]

After 11 years, I get flare up pains occasionally where my kidney is.. Post surgery tho it was just where the incision was. However if it seems odd to you, keep bring it up till you get an answer. Don't let them just walk away without an answer, they are getting paid to see YOU and the can make time to answer questions of concerns.

[RichardMEL]

I'm just like Kelly (only she's WAY better looking ). My site, even right after surgery was pretty good.. the most painful part was having the staples pulled out.  Like Kelly, i too feel "pangs" every so often. I've found sometimes that happens if I haven't drunk enough and maybe I'm a bit dehydrated. If I go drink a 600ml bottle of water all is good again. I'm not saying that's the cause or anything, but I have noticed that it seems to happen if I've not had enough to drink (I reckon it's Danny saying - hey you moron, don't need those restrictions now.. DRINK UP BUDDY!!).

At first I did worry about these pangs being an issue, but my labs have been good, and the clinic have looked at it, and yeah pressing down on the kidney itself causes no pain, so it doesn't seem to really be a big deal.

However like everyone else has said if there's ANY doubt or concern - call the tx co-ordinator or def. mention it at clinic. It's a valid concern and not stupid, and it's definitely better to get checked and know all is OK then not.

[Brightsky69]

My transplant is 10 months and 6 days old. I get pains in my pelvic area but nothing major. I also have siatic pain on my right side. I chalk it up to getting old 
I have also gotten pains in my knees...mostly stiffness.

[edersham]

I get pangs the  same as Richard if I'm dehydrated.  The only odd part is it happens where my old kidneys are, not the transplant. Even though it's been 17 months there seems to be some amount of protein coming from my old kidneys. How do they know it's from the old kidneys? They don't for sure but it decreases each time I'm tested so that's a good sign.  It's odd that I would have any residual function because at the time of tx my creatinine was over 10 even though I had had dialysis only 16 hours before but I was still producing urine then. Anyway, the other day I spent 7 hours flying (2 flights) and only had 20 minutes of running  (if you could call what a 63 year old arthritic can do running) from terminal to terminal and only managed to get 4 small cups of water and one small cup of cranberry juice while on the planes. I asked for more on the second flight but they said they were low on water and would be coming by with one more pass about an hour before we landed. They did but they ran out before they got to me and yes they knew I was a tx patient. Flying isn't what it used to be. I arrived in Anchorage at midnight and drank a quart of water before going to bed but I still had pain in the old kidneys and leg cramps that took me back to my old pretzel imitating days of dialysis all that night.  I guess  next time I'll pay the $10 for a couple of bottles of water after I pass through security.



Ed

[C904]

Add me to the list of a pain pang occasionally.  Where I had the most frequent discomfort was on my right hip just below the transplant.  This would pop up a lot the first three months and my best guess is that it was from the skin being pulled so tight where they closed me up because I took the whole low protein thing very seriously and I was super thin before transplant.

I had some problems a few months ago with the Prograf shooting up way too high and that brought on some more frequent pangs in the area.  Never had any pain consistently, just a out of the blue ouch and it is gone.

I have had the neck pains off and on for three months, but it is from a CMV infection I have been fighting and not from any meds.

I would push the issue with the different pains and see if they could try anything different.

Pain is often inflammation and that does not mean you have to be all red and swollen.  I do a good amount of natural anti-inflammatory foods everyday because all my life I have had autoimmune problems (arthritis, asthma, allergies).  I have no clue if you want to talk to your doc about going this route if they can't stop the pain.  Each day I take fish oil tablets (approved by the kidney staff) and black cherry juice and three tablespoons of cold pressed olive oil.  The olive oil is loaded with good fat, but it still is fat.  All three of those items are very strong natural anti-inflammatory foods and they help me out a ton.  Even with immune suppression my body still has tendencies that lean towards inflammation.

[jbeany]

Another thought - it may be nerve damage.  They slice apart a lot of tissue, and the nerves go with it.  It can take a year or two to reroute some of those.

[paris]

Jbeany, that is another good point.  I still get the "spark" nerve pain.  My son had a 6 inch incision on his neck and face 15 yrs ago and still gets that shooting pain from the nerves.

Olivia, please let us know if the doctor gives you an answer.  We want to know that you are ok.

[Sax-O-Trix]

I am almost 5 months post-transplant and I get slight kidney pains (like a few others have mentioned) if I haven't had enough water.  I am having difficulty drinking 2000-2500 mls of water a day!  The first 1000 mls are a breeze, it's the other 1500 mls.  Prior to my transplant, I had no problem whatsoever drinking that much water in a day...  I can also feel the new kidney (I never did give "it" a name) when I wear pre-transplant pants and it is unnerving!

Check with your neph again - insist on an answer!

[RichardMEL]

by the way - not so much pain or anything, but I've noticed very much since tx that I can really feel the artery they connected the kidney to. I forget what it's called, but it's one that runs down my left leg, and I can feel it almost buzzing at times - not fistula type thrill, but it's like extra pressure, or extra fludi, or something going through it all of a sudden I can feel it. It's not bad or anything.. it's just funny that I'll be standing around somewhere and I feel all this blood rushing around (and no, not just cuz I've seen a good looking girl...  ). Has anyone experienced anything like that (the feeling the artery thing, not the cute girl... )

[Chris]

by the way - not so much pain or anything, but I've noticed very much since tx that I can really feel the artery they connected the kidney to. I forget what it's called, but it's one that runs down my left leg, and I can feel it almost buzzing at times - not fistula type thrill, but it's like extra pressure, or extra fludi, or something going through it all of a sudden I can feel it. It's not bad or anything.. it's just funny that I'll be standing around somewhere and I feel all this blood rushing around (and no, not just cuz I've seen a good looking girl...  ). Has anyone experienced anything like that (the feeling the artery thing, not the cute girl... )

I get that feeling too and don't remember the name of the artery either. I'd have to crack open my anatomy book.

[edersham]

Ditto on the buzzing artery.

Ed

[paris]

I can feel my new one too and it seems odd.  It seems like it should be tucked back in farther instead of sitting right there in front.   

And yes to the artery question.  I didn't know others could feel it too.

Olivia, you have started a good thread. Now I hope you get answers and aren't worrying too much.

[Chris]

I wish I was at my transplant hospital in their library, they have a lot of great books on transplant, mainly for the students there. With out knowing for sure how the kidney is connected arterially, going by what I feel and the way others have said they feel it, I am going to say it is the femoral artery which is in that location.

[olivia]

Thanks to all of you for your helpful responses. I went to my primary care doc today. He gave me exercises to do for a muscle in my lower back that is causing some of the pain in my lower back and down my leg. He also gave me knee exercises to help the knee pain, He thinks my knee is injured at this point and gave me directions to ice and stretch and rest it.  He agrees that I am probably compensating one side of my body to protect the kidney area. Hopefully this will all help.
I have complained to my transplant team. They suggested nothing other than it is part of the healing process, I should exercise more, and the kidney is fine. So I have stopped complaining to them. Tired of them looking at me funny like I'm nuts. I would like to know how I injured my lower back muscle and knee?
I am almost 8 months post transplant and frustrated with these injuries. I believe its partly the medication side effects not to mention like you guys said the immunosuppresion has us healing at a slow speed.  :
 When the kidney area hurts it will also radiate down that leg. I feel like I'm crooked, need to learn to walk again, walk a straight line.
Hopefully I wont get pulled over by police and not be able to walk a straight line. Try to explain that one? ha ha
Thank you all for helping me see I'm not alone with this pain. You guys are great. 

[olivia]

Thank you also for the natural anti inflammatory stuff. I was told I can take natural pure ginger candy as an anti inflammatory. YAY
I find that when I drink too much water I get bloated in the stomach and that causes pain in the surgery and kidney areas.

[sullidog]

I read an article on facebook once it is refered to as fantom pains, it talked about how your brain interacts with the knerves or something. Wish I would of posted the article.

[okarol]

Jenna's pain moved from her native kidneys, to the transplanted kidney, and back again. Here's the thread if you want to read it http://ihatedialysis.com/forum/index.php?topic=23774.0

[olivia]

Thanks again for all of your help.
When my right side, where the kidney sits hurts it does hurt down that leg, I don't feel buzzing just an annoying soreness, my right hip will hurt too. Feels like my body is having a hard time finding a comfortable spot for this kidney to live. I never know from one day to another how I am going to wake up feeling.
I don't like to complain a lot about aches and pains, since I am so grateful for the blessing of this awesome miracle of a kidney.
 My primary doc has been the most helpful along with you guys with this issue. Glad to hear I am not alone with this pain.
People look at me and say how great I look, they don't see the pain.
Some days I am really nauseous too, unable to eat much. That also comes and goes, less than months ago, but it still comes and goes.
  Anyone dealing with nausea as well?

[kellyt]

What does natural ginger candy taste like (other than ginger)?   Is it sweet?  Also, where do you get it, a whole foods place?