Feeling let down by the system

[celticspirit]

I was to donate to a friend 2 years ago our coordinator decided to bring forward my friends heart scan by 3 months which led to the transplant being postponed....2 years on and i still haven't heard a thing from the hospital, I'm still waiting for a letter or something to inform me that the transplant wont be going ahead although my friend and i guess it wont happen, unfortunately my friend passed away last week and I'm left feeling like a spare part, numb and totally heartbroken. Has anyone else had this kind of experience of feeling worthless. I wasn't donating for any glory but surely the hospital involved could have at least acknowledged the fact that the transplant would not be going ahead.....

[Fr Pat]

     That certainly seems like bad communication and it must have been very difficult for you. Just two thoughts that might help:
--- Some hospitals may neglect to keep in touch with a potential donor in order to give him/her the chance to back out gracefully. The hospital might wait for the potential donor to renew contact or ask for a progress report. I have no idea, of course, if this is what happened in your case. i just mention that it seems to happen sometimes.
--- Sometimes there may be a confidentiality problem. The potential recipient's health status is private, and sometimes that hospital may not be able to legally share information with a potential donor unless authorized by the potential recipient.
     If you would still like to donate and are able, www.kidneyregistry.org would try to find you a recipient, preferably one who has a willing but incompatible donor. You would donate to that person and then that person's incompatible donor would donate to someone else, and so on down the line. So you would start a "chain" of otherwise impossible donations. You might want to give it some thought.
   best wishes,
    Fr. Pat

[snoopy62]

To add to Fr. Pat's response, I'd point out that transplant centers are often under-staffed and overwhelmed.  It is all too possible to fall between the stools.  It's probably a good idea to be somewhat pro-active, and call in periodically to remind them you're alive, and wish to proceed.
    Good luck, and hang in there,
    Snoopy

[sherri]

Feeling let down,

I am so sorry for your loss.

Perhaps, if you feel up to it you could write a note or email to your coordinator and staff thanking them for the time and effort during the pre transplant process and also letting them know how much a phone call or email would have been appreciated. I find that I learn to most from my patients and their families. The relationships or lack of relationship sometimes, is so hard to navigate. But a kind word almost always goes a long way.

All the best,

Sherri

[donor99]

You should have been informed...to center is to busy for that