Is it normal that my Transplant Center will not tell me how many potential donors they are processing for me?

[Fishing4ever]

I am new on this site. As instructed by my Transplant Center in December, I have been doing outreach to locate a living kidney donor. My Transplant Center will not tell me how many people have completed the on-line preliminary health questionnaire or how many have been accepted for further evaluation or how many are on a "hold" list for further evaluation if any of the initially evaluated people get disqualified. I understand and respect HIPA and confidentiality, but I feel the need to know how many potential donors I have generated that are being (or will be) evaluated by the Transplant Center. Their failure to share these numbers makes it difficult for me to know if I should still be aggressively expanding my outreach for new potential donors.

I'm curious if this is unique to my Transplant Center or if it is a national policy?

[Trident6656]

While I was fortunate to have my daughter donate her kidney and was able to get info from her though out the process.

My team would not release any info about her even knowing our relationship. Right down to keeping us separated the day of surgery to give her a clear pressure free environment in which she could back out last minute if she so chose.

Thankfully she did not!

I think it is fairly standard to protect everyone involved.

[Transplant2018]

It's frustrating, but this is the policy of all tx centers. You need to talk with your potential donors to see where they are in the process. Because some potential donors decide not to follow through and many are disqualified, it is important to keep actively looking for a donor.

[Herkidney]

It is very frustrating not knowing what is happening. Please allow your potential donors to let you know where they are in the process as opposed to calling the transplant center to follow up with their process. Also, as hard as it is, please refrain from asking your donors about where they are in the process - let them bring it up and talk about it if they are comfortable. I have been through it and I completely understand. Also, do not stop talking about your need for a kidney transplant. Not only can you help yourself, but you can possibly help someone else. The best of luck to you!!

[ArsenalFan]

There is also a legal issue in the US called HIPAA - about the disclosure of medical information to anyone other than the doctors or insurance and even then that is part of the forms your sign giving those doctors and your insurance access to those records.

[Transplant314]

This is not unique. I was working with a hospital in NYC. My family spread the word via social media. We typically heard from people who tried to be tested or were tested and turned down due to underlying conditions such as previous cancer, high blood pressure, heart conditions to name few.

I had no idea how many people were on my list and had the same concerns you are having. Should be continuing to search for donors or not.

My transplant coordinator was less than pleasant and when I asked she said she could not tell me who had been tested and who was waiting to be tested. I insisted that I did not want to know anyone’s name just if people were still in the pipeline to be tested. My wife and I were reluctant to argue too vigorously as the coordinator held the cards. I contacted my transplant nephrologists office to see if they could find out. The coordinator got annoyed by this but we believed we had a right to know at least this information. In the end the information we received was there were a “number of people” who had reached out and were going to be tested. This information helped but we still did not know what “a number of people” meant.

I was extremely lucky and after a six month search a live donor came through.

You can talk to your coordinator and say you understand the HIPA rules and have no interest in names just whether you should keep marketing for a donor. You have to fight and push for information even after your transplant and through your recovery.

Finally I originally thought I would never find a donor but was shocked that people are willing to donate for whatever reasons they may have.

Good luck and stay strong and healthy. If you have any other questions please feel free to reach out.

[AndrewT]

Dear Fishing4ever,

You are, very clearly in the USA so, being in England, I can't 'speak' for your System. However We have 'patient confidentiality' rules that, Do Limit, what information can be Passed On. When I first visited, my 'old' Dialysis Unit, I found that No-one had been 'told' of my progress…. The same Rules apparently!

I received a Kidney from a 'deceased' Donor, the only 'thing' I knew was that 'He Died From A Brain Tumour'. I'm afraid that, in this day and age, 'Confidential' information is Very restricted- apparently even when it can be helpful, to people. You could maybe try, speaking with, a Hospital Administrator.

Sorry that I can't be More help Fishg4ever, I pray that you are Transplanted soon.

AndrewT

[Bax509]

I share your frustration - this has been my experience as well. It's very hard to think about or plan your what your life may be from next week to next year when you don't know the status of the evaluations. And yes, I know about HIPAA and generally agree with the concept but it seems there should be a middle ground. I guess one silver lining to this issue -it's a good reminder to stay "in the moment" since we (really all of us) have no way of knowing what the future holds.

[Ladybanditfreedom]

My transplant team did not let me know anything until there was a match then it still took time my conworker started in April of 2013 and I did not receive his kidney until November 2013.

[NeedingAdonor]

The HIPAA laws and confidentiality rules apply here. Some people want you to know who they are and others prefer anonymity. I find the process for my husband Greg frustrating as well. It took me awhile to comprehend the process because you are right. Does one go campaign more or is their a close match coming? Our coordinator says to me over and over, "I encourage you to talk to the donor about where they are in the process". One day I said, "So what can I ask you as our coordinator"? because the ambiguous responses made me feel awkward, like I was doing something wrong if I asserted myself about my loved one's life~!

What I still have a problem with is why if their is a paired exchange being tested for, for example, they only test that one and put the other as a backup. Why not let them both test? It was explained to me that male donor to male donor is better then female to male in our case. What does that mean? A female direct donor wouldn't be as good as a male waiting in the paired exchange for another male's kidney and a better match. However, the reverse isn't true. Females can do well with male donor. Now, does this apply to close family donors or not? Not sure on that one.

Hang in there. Words of wisdom from my mentor. Keep throwing the net out there and lining them up. Until the dotted line is signed you don't have a donor.

Hang in there and don't count your chicks til they hatch! Keep campaigning like you don't have a donor. I guess several at a time can do the initial questionnaire and blood pressure stats etc. But when it comes to labs not so much. This support group is great to keep us campaigning and sharing successful tips.