Pain in native kidneys

[brandi1leigh]

Hmmm....pancreatitis.  That's a workable theory.  Sometimes the smart thing to do is think outside the box!  I wish more docs would do just that!

Agreed! My doctors either attribute every problem I have to my PKD, or they refuse to believe the obvious symptoms are related to my kidneys. For example, I have chronically low hemoglobins. Despite, my hematologist telling my neph repeatedly that I am epo resistant, they keep making go back to the hematologist. The neph tells her it can't possibly be just my kidneys. This led to 3 bone marrow biopsies in 6 months.

Regardless, there has to be a reason that Jenna is feeling so terrible. If the docs won't brainstorm, then I guess that's what IHD is for. Do I really think it's pancreatitis or gall bladder issues or appendicitis?  Probably not. But it kills me that when it isn't what they thought it might be, the doctors stop trying to find an answer. If there's no obvious sign of a kidney stone, then why don't they try something else? I'm not suggesting they subject Jenna to a lot of unnecessary tests, but at least consult with another specialist. Try to find some answer. I hate going to the doctor and being made to feel like I'm going crazy because they can't figure out what my symptoms mean. So frustrating.

I'm very glad Jenna seems to be feeling a little better. Hopefully, it only gets better from here.

[Wattle]

Jenna scheduled a meeting for us with the transplant coordinator and psychiatrist this week. She wants to have a serious discussion, and then move on I think. Since her PRA is likely to remain high, she may explore desensitization, which is not available through either of her current hospitals.

Just wondering how Jenna is feeling. 

Have you had the meeting? I was surprised to read both hospitals do not have a deseisitization program. It is more common here, but generally only with a live donor transplant. I am not sure of the protocol for the cadaveric wait list. Jenna should be getting better care.    Wish I was there to support you Mama Bear, my claws would be flying. xo

[okarol]

The meeting with the psych and coordinator is tomorrow. Yeah, only one or two hospitals here do desensitization. And it is usually for a living donor transplant - although Vandie was treated and got a match with a deceased donor - so it can happen. Nevertheless, all patients must first be accepted to the UNOS list which governs deceased donors, before they can have any living donors evaluated.

Yesterday Jenna saw an internist who gave her a thorough exam. Of course Jenna was feeling better when we arrived.. isn't that always the way it goes? But the doc poked and prodded and her opinion is that the scar tissue from rejection in the transplanted kidney can cause pain, in combination with pressure in her abdomen (and against the kidney) from her slow moving intestines that may be irritated and the pain is referring to Jenna's lower back. She did actually feel pain at her transplant site, but since the ultrasound shows no kink, narrowing, blockage, fluid collection or stones, it may just be the scarring. So the plan is to take stuff to really clear her bowels and see if it doesn't relieve some of the discomfort. I hope that's all it is. Her creatinine is still nice and steady at 3.1 - so that's a blessing. 

[Wattle]

Her creatinine is still nice and steady at 3.1 - so that's a blessing. 

  Loving those numbers Brave little Bean!

[billybags]

That sounds a lot more hopeful, those pesky bowels, lets hope it does the trick.

[okarol]

Just as mysteriously as the pain came, it is now gone.

[pagandialysis]

I hope this hasn't already been touched upon during this thread because if so I must have missed it.

I was told by my Nephrologist that the kidneys have no nerve endings and what I was feeling must be near them but couldn't be the kidneys themselves. I am a little confused by this since I always have a pain there once or more a day.

Any thoughts on this?

[okarol]

I hope this hasn't already been touched upon during this thread because if so I must have missed it.

I was told by my Nephrologist that the kidneys have no nerve endings and what I was feeling must be near them but couldn't be the kidneys themselves. I am a little confused by this since I always have a pain there once or more a day.

Any thoughts on this?

The doctor surmised that it wasn't the kidney hurting (after they checked via ultrasound that there was no blockage or fluid build up) but it was possibly the scar tisse, and the bowels, that were hurting, adjacent to her kidney. And radiating to the area of her native kidneys too. But we'll never know for sure.

[MooseMom]

I'm so relieved the pain is gone because I know how worried y'all were.  What wonderful news!

[Ang]

stress is over, good news

[aharris2]

Just as mysteriously as the pain came, it is now gone.

When it comes to the well-being of our loved ones, mysteries suck!

Thank God for both you and Jenna that the pain is finally gone

[Sluff]

Glad to hear that. yay!