Hydrodensities in the remaining right kidney, any need to worry?

[Nancy]

I could not obtain ANY of my medical records until my 2 week followup.  On the trip home I read where the CT showed "there are at least 5 subcentimeter hydrodensities in the right kidney too small to accurately characterize but are statistically most likely benign cysts"  "which could be further evaluated with MR imaging".  Further MR imaging was not done.  I still haven't been able to obtain my complete medical records, which was promised to me prior to donation.  I go for my 6 month followup this week.  I've asked to have these hydrodensities explained to me at that time.  After 6 months passed and I hadn't heard from the center I contacted them about my followup.  That was Jan. 15Th.  I was told at that time I should receive my medical records in 3-5 days and that due to the circumstances the fees would be waived.  I still haven't received my records and yesterday (1/31) I received a PrePay Notice.  There is no way now that I can possibly obtain my records prior to my 6 mo. followup. 

I'm beginning to worry there is something in the records they don't want me to see.   Everything I have read about donation cautions that the donor makes sure they get EVERY report and to make sure each report is explained to the donor.

Sorry I've rambled but has anyone else had trouble obtaining their records?

Can anyone tell me if their kidneys showed hydrodensities and if so was there reason for concern and was the CT followed with MR imaging?

I am a big advocate of living donation.  I feel wonderful and have had no complications but this is putting a cloud over my experience.

[tantemorte]

I've been able to get my records for the work-up & operation BUT my recipient had a lot of problems.
Since the transplant failed the same day due to insufficient circulation to my kidney in him,we were anxious to find out what happened,especially as pre-op we've been assured over & over that his circulation is just fine.But each time he asked for his work-up,he only got the progress reports of doctors to each other and a few test results.
We did receive a letter stating that they knew of his excessive calcification and the very high risk of failure it represented but decided not to tell him/us because they apparently decided it was more important to try anyway without informing him. They instead withheld the true results of a CT scan from him/us.
He tried again to get his records to find paperwork relating to this (which they alluded to in the letter)...but once again,he only got the progress reports. At that point the hospital declared they are not communicating with us anymore.
Perhaps he might've gotten them eventually but seeing as he has passed away... 
This was very vexing for us,because had he known the low low chance of him actually retaining my kidney,he would've refused.

Mind you,I still haven't been able to find out what sort of staples they used inside me (I only realized they leave some in when I saw the hemolock clip warnings)..I really want to know because I have metal allergies & I'm curious of the composition.But they won't tell me.The best I got was from the coordinator saying,don't worry,she found out what they are made from,they are MRI safe...without actually telling me what they're made from. I had to chase her around for this...and then of course they stopped communications like I said.

[CK]

Honestly? I didn't ask for all of my records.  I opted to trust the doctors.  I was told I got a half-million dollar work-up and was healthy.

Sometimes a little knowledge is a dangerous thing.  Medical records contain language that could easily confuse the layperson into thinking there was something terribly wrong, when a trained person may have looked at your test and not been at all alarmed by those hydrodensities, which for all we know, can be benign or normal and nothing to worry about.

I think it makes sense to find a nephrologist and ask about this issue, but it seems like you are catastrophizing.

Maybe I'm naive, but I stubbornly believe that most donation programs mean only to do the recipient well and not hurt the donor in the process.  Yes, there are unscrupulous doctors out there, but without any real proof why believe you've been the victim of one?

JMHO.

[Nancy]

I don't think I had unscrupulous doctors.  I think I had excellent care in the hospital and I assume the surgery was stellar as my recovery has been.  However, I met my surgeon for the first time the day before the transplant.  At that time he walked into the room and said he wanted to warn me right then that would probably be the only time I ever saw him as he would be on a plane 2 hours after my surgery the next day.  I received a letter even before I had my workup that they didn't see any reason I would ever need to be seen at the center after the transplant.  I live 7 hours from the center.  I believe it's crucial I have access to my records in order to monitor my health in the future.

It was my understanding they are suppose to explain test results to the layperson.  You might believe you got a half-million dollar work-up but I didn't even get a 24 hour urine test.  I am an advocate for living donation and will continue to be but feel everyone has a right to the records.  I certainly don't want to incur a half-million dollar second opinion after the fact as it's been my experience doctors always want to do their own tests.  It wasn't my intention to swap a kidney for a physical but I certainly don't think it would be a fair trade if that's the way you look at it.

[WilliamLFreeman]

Nancy,

I am sorry about your experience. IMO as a physician & living donor, good medical care in general, and especially good transplantation care, include sending all living donors their medical records [except the Living Donor Advocate’s record and the discussion of the Committee that assesses whether the potential donor is appropriate to donate]. Like CK, I trusted my surgeon and center. But I still asked for a copy of all my test results, Operation Report, and Admission and Discharge Summaries -- SIMPLY FOR MY FUTURE MEDICAL CARE, in case my future physician wanted to look at them because they might be relevant to my future care -- i.e., the same reason you gave in your second post.  Moreover, some states/provinces have laws that require that patients receive a copy of their medical records on request.

You do not need your medical records to ask your surgeon [or physician] in your 6 mo. f/uL  What are the hydrodensities? What are their implications for you? Should you have a second CT to see if they have changed? Should you have a MRI to define them? But, AS WELL, you should get your medical records of your all test results in your work-up, of your history and physical on admission, and the Operation Report. (You do not need all the other stuff, e.g., nurses notes during your hospitalization.)

Does the medical center of which your transplant center is a part, have an Ombudsperson or grievance procedure? If yes, use it to ask that the records described above be sent to you or to your PMD/nephrologist. And/or, is your PMD/nephrologist willing to write a letter to the transplant center asking for the records described above, AND ALSO ask for a waiver of the fee promised you?  What do your state/provincial laws state about this?

Please feel free to Message or e-mail me directly, to discuss this off LDO if you want.  In any case, I wish you ALL THE BEST IN YOUR MEDICAL CARE.

Tantemote,

I am sorry your recipient passed on.  Was he a relative?  (I have not followed your prior posts, as you can see. Sorry.) I wish you and his family PEACE AND RESOLUTION, even if it may seem for some that peace and resolution will never come -- especially if there are unresolved questions about his health and the care he received.

As you probably know, the HIPAA regulations [Health Care Improvement and Accountability Act] govern maintaining the privacy of medical records. I do not know if they apply concerning your recipient’s medical records. I hope your and his family’s questions and concerns are answered soon, and verified by seeing his medical records or have a physician of your and their choice obtain and explain them at least.

Bill

[Nancy]

Bill, thank you so much for you input.  I have garnered a great deal from you various posts.  Prior to my donation one of your posts alleviated my concerns over not having a 24 hour urine test.  Your information has been invaluable to me and I'm sure others on this forum.

CK, I'm sorry if it seemed I went off on you.  Donation has been the most rewarding event in my life and I would do it again and again if I could. 

I told my recipient/friend the first time I spoke with her, after finding out she was in total renal failure, that I would give her a kidney and if I couldn't I would find her one.  I'm fortunate I was able to donate because that last part - finding a kidney - would have been a daunting task indeed.  I didn't realize how hard a kidney is to come by until I became immersed in the living donor  community.  I never waivered once in my determination to donate.  I was determined to get my friend off dialysis in under 6 months.  Unfortunately that didn't happen but it took just under 9. 

I did all my research and went in knowing the possible complications.  After acing my workup the one thing that didn't cross my mind was that I might have a problem.  I'm not 100 percent certain but I'm certainly hoping there is no reason to be concerned over these hydrodensities.  Probably all it would have taken to set my mind at ease in the first place would have been being told they weren't really concerned about them and why. 

[CK]

It's fine.

As someone with anxiety myself, I understand it.  And I'm all for taking care of your health.  I went into it thinking that I could not control the outcome and was not going to worry about it unless I felt the need to worry and I haven't. 

I got all kinds of tests that I didn't even know existed, much more than I would ever get in my life and they all came back normal.  Stress tests, glofil, CT scan, pulmonary testing, 24 hour urine.  I am confident that I was told the truth and I don't feel the need for my records at this point in time, in fact, it never crossed my mind to ask for them, I'm sure they are sitting in that hospital somewhere.

Seems like you need to either get the testing done to ease your mind, or figure out how to change the way you think about the situation.  To me, it seems like many people on here focus intensely on little details of their health because they now have one kidney-much more so than they would if they still had two.  Generally I forget I only have one except to drink a lot of water and not do anything that might damage it.

Maybe I'm the unusual one. 

JMHO.

[Snoopy]

Hi.
  To all those who've had such painful experiences getting their medical records:  did you ask the medical staff, or go through the hospital records department?  I just innocently approached the records department, and, I think after I sent them a copy of my ID, and after I put the expected copying and mailing charge on my credit card, the full record of the testing, surgery, and hospitalization was sent to my home.
   Not that I can fully make heads or tails of everything that's there...but I feel safer having it handy, in case questions ever arise.
      Be well, Snoopy