kidney transplant recipient.

[ru7318]

hello everyone with a kidney transplant, congratulations to all.

I received my new kidney about a year and a half ago.

I still have pain at the site of the surgery. I drive for living what advice you guys can render?

[Jayhawker]

I’m assuming you’ve talked with your transplant center about this. If not, that’s where I’d start.

If you have talked to them, can they tell what’s causing the pain? My second thought would be to see if it can be corrected or medically managed.

Finally, if it can’t be either resolved or medically managed, I’d ask for suggestions as to how to deal with this pain long term. I’m not sure if that would mean referral out to a pain management program of some sort. Of course, driving for a living, you’ll have major restrictions on the meds you can take while maintaining a commercial driving license. Pain medications may not be an option while you drive.

Please let us know how this is going. I’ve just been through a 4-week bout with intense bone pain from an injection I had to receive weekly to elevate my white blood cell count 5+ months post transplant. The bone pain really was horrific. So, I can imagine what this must be like for you.

Jayhawker

[ru7318 in reply to Jayhawker]

thank you for the feedback, I hope you also feel better.

Yes Jayhawker I am in touch with my transplant neurologist and an ultrasound also has been done, everything seems normal, like you mentioned doctor gave me Gabapentine for nerve pain but I am reluctant to add another medication to the routine. I have an appointment with the urologist tomorrow and nephrologist day after regarding the pain let’s see what is the outcome? How did you develop your condition? Thanks again!

[Jayhawker in reply to ru7318]

My low WBC count is directly related to the anti-rejection meds. The injections have my count pulled up some. They’re now jockeying my meds to try to find the right combination and doses to first protect the kidney and second get my WBC count back into low normal range.

The donor kidney is doing great! And this low WBC count didn’t surface until I was 96 days post transplant. Apparently it’s not uncommon for this to occur about 100 days post transplant. Plus, not everyone who receives that injection experiences severe bone pain as I did…

Regardless, this has been my only issue. I definitely feel fortunate.

Jayhawker

[YorkyinNorfolk]

Congratulations on your transplant. I’ve had my my transplant for 21 years and still have “sensitivity” around the site. I’ve always presumed that’s it’s to do with unhealed nerve endings.

The only time it’s a real issue is when I drive long distances in a car. It’s not a problem being a passenger, more to do with being doubled up and the act of driving (manual car). Tighter fitting trousers, belts (especially jean belts) can all dig in over a period of time.

Wearing looser fitting trousers or shorts helps, and removing thick belts.

You can also get seatbelt padding in a lot of shops so that might help.

Good luck with finding a solution, hopefully the discomfort will improve for you soon.

[March-31-09 in reply to YorkyinNorfolk]

21 years !!!! Congratulations 🎉 to you

[StillKickingIt]

I still get pain around my TX site after 26 years. I found that when I have gas or a full bowel it causes the pain. My intestines were slightly moved which caused a sharp turn. The BM moves slow through this area causing intestinal irritation. My treatment is; GasX or a laxative. By the way, I’ve had all the tests for this issue and they always come back clean.

[Aloha49]

Sounds like scar tissue pain. I am 6 months post transplant and have scar tissue pain in many areas. I am receiving myofascial massage which is a very slow process but hoping it works. Does anyone else receive myofascial massage for scar tissue? I have to have patience. BB

[YorkyinNorfolk in reply to Aloha49]

I have to say that I wasn’t even aware of myofascial massage and had to look it up!

Are you having this massage treatment on your actual transplant site for scar tissue?

[WYOAnne NKF Ambassador]

When they do surgery like this, your nerves are cut. And the nerves are not happy! My transplant center me to a surgeon than did injections in the area of my pain. Injections has lidocaine and an inflammation agent. It takes my pain away and does return but only like once a year or so. Make sure you talk with your transplant center regarding your pain. This is something that is real common, unfortunately, for kidney transplant recipients.

[Palmtreeguy]

I am also 1.5 years after transplant. I had considerable pain and a large bulge at the surgery side. Turned out to be an incisional hernia. No fun - but repaired by a cosmetic surgeon ( of all people).