Pain around Transplanted Kidney

[Spooky108]

I am almost 2 months post transplant and am having new pain and soreness around my transplant site. My incision and the area around it feel numb when I touch it which I assume has to do with nerves. The pain itself is deep (as is not on the surface where my scar is) and is normally dull and achy but has been very sharp a few times. It gets worse when I sit and is usually less sore when standing or laying back. I had pain like this for the first month but it when away and just started back again this week. I called my transplant center was told to call back if the pain gets unbearable, I felt a little blow off and wasn’t really given an answer. Has anyone else experienced this kind of pain before and should I be concerned about it?

[Denise-80]

Hi Spookey108, congrats on your new Kidney!!! It’s been a while for me but I do recall some pain early on. I was told the nerves around the kidney that were severed were connecting…or trying to. Even before that (very early after transplant) I remember thinking that what ever they moved to make room for the kidney was trying to find a new spot…and I could feel it. They ended up doing an ultrasound for me in the office…everything was fine. I never had pain at the incision either. If I were you, I would keep reporting the pain to the team until it subsides or you are satisfied with their answer.

[Spooky108 in reply to Denise-80]

Thank you for your reply and the congratulations! I will definitely be following up with my team to get some more clear answers

[AndrewT]

Dear Spooky108,

I Pretty Much Agree with Denise but, my advice, is to 'wait' maybe a Bit Longer, just to see if Things Settle Down. I had a, fair bit, of numbness- especially at the top of my Right Leg, for almost a year.... my Transplant was that side.

All this said- IF you continue to get pain, especially if it is Increasing, then DO see your Transplant Team ASAP. Are 'they' not Monitoring You Regularly, in any case? I recall having to attend 'Check Ups' TWICE a week, to begin with. You maybe need to mension this.... COVID notwithstanding.

Lastly....and this Should have been 'Firstly'..... Congratulations on having your Transplant, especially at the moment.

Very Best Wishes

AndrewT

[Spooky108 in reply to AndrewT]

Thank you for your reply! My transplant center is 3.5 hours away from my home and since I have been doing so well they aren’t having me come up for weekly check ups. I have been getting blood work done locally once a week and have had regular calls with my doctors and team. But I’m actually going up for an in person appointment this week to transfer my care from the surgery team to the nephrology team. So I will definitely try to get some more answers. It has made me feel much better knowing others have experienced similar pain though. That’s!

[PostivelyJo]

Congratulations . You have a lot to deal with at the moment so create space and calm when you can. You are going through huge changes emotionally and physically . Some pain is normal odd twinges aches and sharp pains still happen for me 21/2 years on. Reassurance in the very early stages and I would consider that to be at least 8 months is vital … speak to your team they will understand.

[Spooky108 in reply to PostivelyJo]

Thank you for your reply! When I initially spoke to my surgeon about the pain she made it seem like pain after the month was very abnormal. So it was been very reassuring to hear that others have experienced similar things I have an appointment this week and we definitely be discussing it more in detail. Thanks!

[Okiksaints1955]

Hi ... the pain will come and go even for years. Nerves were cut and some parts were moved around. The new kidney is a unfamiliar area and will continue to adjust position. Plus the pain is heightened by our awareness.

Just make sure the stent is already out at this point intime.

And write down specifics of each pain. Then report it incessantly - it is your right to get the best care possible.

Take care and be well

[Spooky108 in reply to Okiksaints1955]

Thanks for your reply! I had my stent taken out about a month ago and it that relieved a lot of pain and discomfort I was feeling. I totally agree that is pain is likely heightened by awareness, I feel like I’m on edge about every little thing haha. That’s great advice to start writing down the specifics of the pain, I’m going to start doing that. Thanks!

[OperationKidney]

I recall having some pain also, and my doc at the time said sometimes it doesn't go away or it comes and goes. Unless it comes with other symptoms I wouldn't be too concerned.

[Spooky108 in reply to OperationKidney]

Thank you! It’s has been very reassuring to hear other have had similar pain

[Transplant314]

I Congratulations on your transplant. I had pain and discomfort for six months. The surgeon cuts through so many layers plus you abdominal muscles. You are not only healing at the surface but internally. I too had an ultrasound and everything was fine. If the pain is constant and unbearable let you team know.

Certain positions and sitting up will be more uncomfortable. The mental and physical healing take time.

[Spooky108 in reply to Transplant314]

Thanks for your reply! It has been so reassuring and made me feel a lot more at ease knowing others have experienced the same thing

[Spider53]

Congrats on your transplant Spooky108!! I’m 3 1/2 months since i got my transplant, Yes, soreness and little jabs of pain is normal and so is the numbness. I still get a little jab of mild pain once in a while, soreness if I do to much. Give it time, I’m pretty active and it’s hard to sit around but healing takes time. Good Luck and congratulations on your transplant. Spider1

[WYOAnne NKF Ambassador]

Congrats on your new kidney!!!As others have said, it does take awhile for all to settle down after a transplant. Being on steroids makes your body heal slower also. Remember though, this is your body, your life. You know it better than anyone. If this pain continues make sure you let your transplant team know again and again if you need to. Be your own advocate!

About 8 years ago they discovered I had an incisional hernia - all in my transplant incision. Had it repaired twice.

I have had issues for many years now with "entrapped nerves." Pain will all of a sudden start, maybe last for several days or a week and then quickly disappears. No rhyme or reason as to when it starts. I am 22+ years post-transplant now and have found a great surgeon that has helped me. There are injections of steroids and "lidocaine" that can be injected in the area of the pain. This of course only happens after everything else has been ruled out.

I guess my point is - if it continues make sure you let your team know. And just because you have pain, doesn't mean you have to live with it. There are things that can be done to help and you won't need more surgery.

Take care.

[Spooky108 in reply to WYOAnne]

Thank you for taking the time to reply! This is all really great information. I will definitely be more persistent about getting some answers for my transplant team.

[EchoStorm]

Yes, it’s your ab muscles healing and the sharp pains you feel are the nerves at all the incision areas that are healing. They have to cut into several layers and the sutures take months to dissolve. I still get this pain at 5 months out.

[Spooky108 in reply to EchoStorm]

Thanks for your reply! It has been really comforting and reassuring to know other have experienced the same thing

[Quercusalba]

Congratulations on this blessing of new life! From about 1 to 5 months out I had frequent sharp pain over the surgery area that would come and go at random. Transplant team said it was nerves regenerating and tissue healing. The surgery numbing agent gradually wore off so I can feel the top of my thigh. Now at six and a half months from transplant I might have sharp pain once a day but usually only when I overdo it. Lying down and allowing my body to rest for a half hour pretty much stopped all discomfort so I came to appreciate that simple solution, and reason for a chill moment in my busy day. It's no cakewalk, we are Kidney Warriors! I wish you all good things. 💙

[Spooky108 in reply to Quercusalba]

Thank you! Your comment made me realize that I do have the most sharp pain when I am more active so I definitely need to be better about prioritizing rest. It was been really reassuring to hear that other experience the same thing so thank you for your reply!