Discomfort

[Strew59]

Has anyone had discomfort after a transplant? Since I had my transplant in 2017 I have felt like I am carrying a ball around with me in the same are as new kidney (groin).

[peregrin]

I don't believe this is normal. You should talk to your transplant team

[Strew59 in reply to peregrin]

Thanks for the reply, I have mentioned it in the past, but I think as long as my kidney is good then there happy, I will mention again I think next visit

[peregrin in reply to Strew59]

Perhaps, but you should be happy as well

[NoCaGirl]

After my transplant I had sensitivity around my new kidney - it was bad enough i couldn't touch up against counters or other people or pants that weren't elastic/ loose. We got CT and it looked OK. No incisionsl hernia or other issues we wanted to rule out. Mr team thought it could be CRPS & prescribed Gabapentin. It has diminished but it's still there in background. I believe now it could be adhesions from surgery, perhaps. But it's 90% better now 3 yrs out. I hope you get yours resolved.

[Strew59 in reply to NoCaGirl]

Thanks for the reply, so glad yours is better, I did wonder if it was scar tissue, it just feels like pressure and only when I'm on my feet, problem is now after 6 years it is causing knee and foot pain, I am currently under the GP, but will certainly speak to consultant on next visit.

[LBatl]

I have a pouch still after 3 years. I was unable to sleep on my right side after transplant and my Transplant Center prescribed Gabapentin and it helped a lot. So, I got use to the pouch! Unfortunately, it may be something we have to live with. Sorry I don't have a solution.

[Strew59 in reply to LBatl]

Thanks for the reply 👍, I hope not, what do you mean by pouch.

[LBatl in reply to Strew59]

Protruding stomach.

[Strew59 in reply to LBatl]

Ah got it, thanks

[bluekidney]

I am two years out from my transplant. I have a similar problem. I feel a pouch and I can see it. I get unexplained cramping around my transplant area. I have gained 20lbs in the last 6 months. I have gotten ultrasounds, CT scans, they’ve done an endoscopy to rule out GI issues. I have constant abdominal pain. I have gone to my transplant team, nephrologist, PCP, neurologist, ER, urgent care and all comes back normal. It’s concerning to me but the transplant team and other doctors don’t seem concerned as it’s not affecting the transplant. It’s frustrating to me and I wish I knew what was wrong.

[Strew59 in reply to bluekidney]

I am sorry to hear that, at least they have looked at everything I wish I had an answer for you, I do not have any cramping or pain, just an uncomfortable feeling weighing me down when I walk think it maybe due to overweight on my tummy pressing on kidney area ?I hope the pain gets easier soon for you.

[bluekidney in reply to Strew59]

I was trying to compose an answer while at work but wanted to say I can relate to the heavy feeling you are experiencing. As well as the groin and foot pain. Thank you for your response and hopefully you can get some answers/relief.

[meggy619]

Initially, I could feel the lump where the new kidney was inserted, but now i don't even notice, it at all

[Strew59 in reply to meggy619]

That's good to hear x

[Denise-80]

Hi Strew59 - I am 9 years post transplant and have had discomfort around my transplanted kidney that was attributed to the following: 1) early on (first year or two) as the nerves tried to reconnect, I felt pain in the area around my new kidney. 2) four years post-transplant…I felt fullness around my transplant and had some blood in urine. It was a kidney stone that came with/in my new kidney. I couldn’t pass the stone. I had to have a bag for urine flow until the stone was surgically removed.

I don’t think discomfort is normal especially considering your transplant was in 2017. You have to be your own advocate and demand they figure it out. It took my transplant team over a month to figure out I had a stone that was threatening my kidney. After multiple calls and back and forth with the nurse on duty, I told them I needed to come in. I saw a senior doctor who figured it out in less than 5 minutes.

You indicate that your new kidney is in your groin area Mine is actually on my right, front lower side.

Best wishes to you,

D

[Strew59 in reply to Denise-80]

Thanks for the reply, I'm sorry to hear what you had to go through but glad your sorted now, I know I need to push this a bit more but I lost almost 3 years with covid and only having telephone appointments sometimes, I am on the ball now and trying to get it sorted through GP then with consultant at next appointment, yes my new Kidney is right side aroynd groun area, appreciate your time.

[ShyeLoverDoctor]

I know this doesn’t relate exactly I had a hysterectomy and it took a solid 9 years for the pain to stop. The doctors just shrugged, I had an ultrasound that showed nothing and the doctor said I see this all the time, post hysterectomy patients with unexplained pain. I’m not saying you should not press your doctors for answers or tests or diagnoses. But bodies have different reactions to surgeries. And things can go wrong. I was transplanted seven weeks ago and asked how long is it safe to take 3 g of Tylenol every day? The nurse asked Why are you taking it? I said because it hurts!!

[Strew59 in reply to ShyeLoverDoctor]

Yes it's frustrating been in constant pain and being told it's normal 🙃 luckily I'm not in contact pain just discomfort which is wearing me down at time, wow 7 weeks early days, hopefully the pain will ease, take care and thanks for the reply .

[Camppy3]

I would talk to your transplant coordinator to make sure everything is ok.