Pain around healthy kidney after transplant?

[DialysisGoneFOREVER]

Eventhough my creatinine has dropped to 1.55 2 months after transplant I still have on and off pain around the kidney every day. It's not a sharp intense pain. I assume it could just be the nerves that were cut around the kidney?I read a post of a lady who still had pain around the kidney 8 months after transplant and her creatinine was only 1.2!

So why do you guys think you can still get pain around a healthy transplanted kidney with a low creatinine? How long can this last after transplant?

[SooMK]

I'm two years out and even now every once in awhile I'll get pain around my new kidney. Not that long ago I had a little too much fun with my granddaughter and felt pain there overnight. My husband said it was probably scar tissue being stretched. I don't know but it no longer bothers me too much. It always passes. My doc mentioned that some patients experience pain on the opposite side of the new kidney. I have had that happen too and that just seems odd. I find the "deadening" of the nerves along the incision more distracting so I seldom explore this any more. None of this has any correlation with how well my kidney is working.

[sahern]

I have had it happen for over twenty years. It only happened every once in a while. the Dr was not concerned and it never caused me any trouble. I was always worried when it happened but it only lasted for few hours and did not cause me any problems.

[DialysisGoneFOREVER]

That's great to hear guys! What are your creatinine levels at?

[sahern]

Mine is between 5 and 6.  It went up to 8 and I was having problems.  PD has kept it under control and lowered my numbers.  I am able to miss a treatment on occasion per the dr.  He even encouraged me to take advantage of this while my levels are good.  We have a house that is in the village that my wife is from that we go to a lot in the summer.  If you look at a map it is above the arctic circle. The place is Bettles/Evensville Alaska.  The shipping for supplies is 80 cents a pound so it would be very hard to do PD while we are there.  There are no roads to the village just planes or a four hour boat trip.  As you can see what I go through please do all that you can to live life and not let the kidney take over your life.  I will be up there for a month this summer.  It will not be easy but it is well worth it to live life to its fullest.  I did not always do this so now I am making up for lost time.

[Charlie B53]

80 cents a pound!   I don't even want to do that math.   I know how heavy my boxes are.  I cannot imagine the bill for freight.

Are you using Baxter products?  Have you called to ask what, if anything, they can do for 'Vacation Delivery'?


I have to wonder what exactly is in our solutions?   The exact recipe.   With a decent water supply and sterile technique, why can't we find a way to MAKE our solutions.  Some thype of containers we could re-sterilize, refill, and re-use.

The freight on the dry goods would be FAR less without all the water.

I've wondered this for a long time.  What would I do if the power were to go out, everywhere?   We would ALL run out of supplies rather quickly.   Having the recipe, dry goods, and a fuel source for fire I could survive.   Since I live sort of in the woods I have a ready supply of wood, far more than a short human lifetime.   Not so much Baxter supplies.

[SooMK]

My creatinine runs from .97 to 1.0x. Doctors, nurses and other transplant patients kept telling me "go live your life." Slowly I've learned to relax somewhat, be watchful, follow my best practices for a healthy life but not be obsessed.

[DialysisGoneFOREVER]

Sahern, so you're Tx kidney worked over 20 years but recently failed and now you're back on dialysis? I assume you had that kidney pain when you're creatinine was in the 1s and it had no effect on your kidney function right? That Bettles, Alaska sounds amazing!

Soo, that's a fantastic creatinine at or under 1!

[sahern]

The kidney pain had no effect on its function. It always made me nervous but my numbers were always good.
I use Baxter for supplies so if I stay for a whole month I will take about two week supply by boat and a friend will fly more up in his plane.  The one thing I will do is ship the machine up with my son on a charter flight, worried if it rains.  I am not sure about the quality of water to try and make my own solution, will have to look into that option. 
Bettles ak is a great place with only 25 or so people that live there in the summer.  The is great fishing, 10 to 20 lb lake trout in the lakes and lots of great scenery.  There is no internet at the house (the lodge has internet) and one tv channel so it is always quite.

[DialysisGoneFOREVER]

Only one channel?? What channel is that?

[sahern]

I think it is mixture of stations that are set up to be viewed for the remote areas of the state.  I know there is ABC news on it but I do not watch much of it when we are up there. I just work around the house and do a lot of fishing on the rivers.