2 weeks post transplant and Rob is still having pain in incision area...

[skyedogrocks]

So, it's been 2 weeks since Rob's transplant and he is still having pain in his incision area....is this normal?  I keep nudging him to take little walks here or there but he says he hurts too much and gets out of breath.  He won't call his transplant unit, he thinks it's normal. 

I dunno, I think he should push a little bit more for walking, not a lot, but a 5 min walk outside now and then throughout the day.  For those of you who had transplants, how were you 2 weeks later?

His levels are great, he's at 1.4 for creatinine (yeah!), they are still playing around with his prograf but that's to be expected.  I did notice that he gets colder more easily and he's very tired at the end of the day.  To me that sounds like low hemoglobin like on dialysis, but he went on Monday and nothing was said. 

[kellyt]

They cut through a lot of muscle and such to get that sucker in there.  I didn't have much pain unless I moved a certain way (the wrong way).  I stopped taking my pain meds while still in the hospital because I felt I truly didn't need them with the amount of pain I was having.

I would definitely bring that up at his next clinic visit.  Creatinine looks good though!      Pain in the area of the new kidney has always been a question they ask me when I go in and I'm now 1 year out.  Apparently that could mean something serious.  But then again, two weeks isn't that long.  He had a major surgery.  Congratulations on the new kidney!!!   

[okarol]

Jenna had to go in to see the team 3 times a week for the first 2 weeks, then twice a week for the next 2 weeks. Isn't Rob being examined in addition to having his labs done?
I would call the transplant team and ask them. I know Jenna's team wanted her up and moving from day one. By the 4th day she would walk about 15 minutes twice a day. (Take into account that she was also 21 years old.) Pain was not a problem unless she was put pressure on the incision, and that was a couple weeks. He could have a hernia, which is not uncommon after abdominal surgery. They also like to check that you aren't having fluid accumulate around the kidney, so they might do an ultrasound.

[cariad]

I agree that it sounds like something that the transplant team needs to know about, right now.

I was a kid with my first transplant, and it was so long ago I cannot remember how the timing went, but I do clearly remember jumping on the hospital bed while my parents were getting medication and discharge instructions from the doctors. That would have been 2-3 weeks after surgery at the most.

My donor felt pain around his incision for quite a while after, but he has always been the type to refuse anesthesia and pain meds, so I know he would never have told any doctors about it. In retrospect, while everything worked out fine for him, I do believe he was in unnecessary pain, and that seems pretty silly to me....

Good luck.

[skyedogrocks]

Rob is going once a week for labs since he is doing so well.  He told them about the pain due to the incision and they seem ok with it.  Due to his size, 250lbs, they said he would take longer to recover to 100%.  He also has a bad back and he is having pain with that also.  He did come home with exterior drain lines and they were removed last Wednesday.

He is able to drive, he is able to sleep on his stomach.  However, he can't stand straight up for too long or he is in pain.  I think this may be associated with his back. 

I want him to call the transplant clinic, but he says he is fine and just repeats what the Dr. said to him.  I think I may go in with his visit on Monday.  We have already had 2 disagreements on this, and he is frustrating me!

[jbeany]

I had complications, so I'm not sure my experience is typical either.  After 4 surgeries, I think my giant incision hurts less than the stupid drains did.  I'm also using lidocaine patches.  Rob might want to ask about get a scrip for them.  You can only wear them 12 hours a day, but they are very effective at blocking the pain so that you can move comfortably.