Second thoughts on my transplant coodinator

[rdr321]

 I posted before about being anxious to get this procedure over with. I am losing confidence with my coodinaor and am asking for some input. When I first met her she told me  the whole thing could be done in as soon as 1 1/2 months to 2 months for it to happen. Having gone thru the testing has taken 3 months. and I see no way of everything taking place in about 4 months at the soonest. This misinformation coupled with her telling me she is going to call me with my test resuts. And not calling me with them. This happened 4 times. I did not care if she called me or not. But she told me she would call me and did not. She told me when they had the committee meeting that she would calll me with the outcome. I waited 3 days for her to call. I then called and I had to call her back 2 more days later to get a hold of her.
  I had a meeting with almost 2 weeks ago. She said she was going to input me into the NKR. I should hear right back because they run it every day and my blood is O. It has been almost 2 weeks and she is 2 days late now on returing my phone call, and I question if she even input me into the system.
   When I met the surgeon. The first thing he said to me was  "I just wanted to see you to see if you are sane".  I am a non directed donor who wants to start a chain. Thinking back about what he said now sounds kind of creepy to me. It is totaly acceptable to go into the military and kill people you do not know, but people think you are crazy because you are willing to experience some pain to help someone you do not know? and it coming from the surgeon. Pardon my french but WTF?
   To me it is not such a big deal for me to donate a kidney. I feel fortunate that my mind operates that way. It is a big deal to me that the people responsible for doing it are sraight with me and I have complete confidence in them. The timing is also important because I still have to pay my bills.
   Writing this down makes me think I should go to another transplant center. It seems really wierd for me to call and complain that I don't think I am being treated right as a vollunteer donor.
   Thanks rick

[Fr Pat]

Dear Rick,
     Sorry to hear of your problems. Whether we like it or not, I think it is true that many people will question the sanity of someone who volunteers as a non-directed donor. So, we just have to take it in stride and do our best to explain our motivations. i do agree that there is a double standard at work in that volunteers for dangerous military service are accepted so easily.
     You might want to consider continuing the process with your current coordinator/hospital despite the many frustrations you have had to deal with. If you switch hospitals it is quite possible that the new hospital will start from scratch and make you repeat all the tests you have already done. And they might even misinterpret your change of hospitals as a sign of "instability". As you have managed to get this far at your current hospital, it might be best to continue there. But, that is your decision, and it must be hard when you have lost confidence in the coordinator. While I don't think there is any excuse for the lack of response about test results, or for the broken promises, it might help to keep two things in mind:
--- SOME transplant hospitals seem to be overwhelmed, and rather than spend the money to hire an additional transplant coordinator they dump too many cases on one person. If the transplant coordinator is simultaneously juggling the test results of a dozen different potential donors at once it can be terribly easy to neglect promised phone calls.
--- SOME transplant hospitals may deliberately slow down the process for a non-directed donor in order to give him/her plenty of opportunities to back out gracefully. The coordinator MIGHT be receiving instructions from above to delay things and thus "test" the commitment of the potential donor.
     I myself was fortunate and had very little difficulty in my non-directed donation 9 years ago, but there does seem to be a LOT of variety among hospitals and coordinators.
    best wishes,
   Fr. Pat

   

[PhilHoover]

1-3 months is an average if EVERYTHING IS PICTURE perfect from the beginning.

From the time of my very first blood tests until the day of my surgery was a period of SIX MONTHS to the very day.  And according to all the research I've done that is a very "short span of time"...

Some of these people have gone through a process lasting three years or more.

You are also not the ONLY person wanting to donate a kidney...BUT THANK YOU for being willing to start a "chain."  YOU are a hero.

And giving a kidney (directed or non-directed) is a VERY Big deal.  I gave mine 18 months ago...trust me, it is a BIG deal.

Phil Hoover
Chicago

[shelley]

Rick, I just want to shout out "I HEAR YA BROTHER!"  I am also very frustrated with my donor coordinator and have been for the ENTIRE YEAR I have been testing to be a donor.  Calls not returned, delays lasting weeks from the time they say they're emailing me test orders to when they actually send them, promises to get in touch with me right away that are broken, and I have to nudge and bug them for almost every communication....I could go on. 

What tops it for me is, they knew I'd had hepatitis 30+ years ago right at the beginning, and could have had my recipient start the immunization process then, since according to them, she would need to be immunized against hep b whether I was her donor or not.  But they waited 6 months, which is why we are now at a year.  Meanwhile, she's gone into end stage renal failure and is struggling with dialysis.

I don't have a choice as to what transplant center, because this is the one nearest her and I'm clear across the country.  When I'm in my calm moments though, I reason that there's a reason for all the delays and frustrations.  Maybe I'll see that reason someday.  Maybe not.  But maybe the delays are part of a larger plan for my life and her life that we can't see.  Sorry to get so airy-fairy on ya there.  I'm a fixer, when something's wrong I want to fix it as soon as possible.  Maybe this is a lesson for me that I can't fix everything on my timetable.  I dunno.

Thanks for listening to me vent 

[ohtobeahayes]

Hi Rick,
How frustrating!!!!!  VERY frustrating. There is very much that goes on that we are unaware of in this whole process.  I felt frustrated by the waiting too, but was told that I'd be waiting during it.  Communication is VERY important.  Do you feel like it could wield a positive outcome if you were to call and mention your concerns to the coordinator?  "I know you are probably overwhelmed and very busy but I'm really feeling lost in the shuffle..." or something else that would help her not feel defensive but it's important that she know how you are on your end. Your concerns are very valid.

I think most non directed donors hear the very same thing, from at least one of the transplant team in regards to our "sanity".  Someday hopefully this won't be such an anomaly, but will be more of the norm.

I really am hoping you can find a way through this.  I wish for you to be able to look back and love your experience. Your whole experience.  What you are going to do is so big, it's almost unimaginable.  So please try to keep in mind that there is surely action behind the magic curtain- these things take much coordinating.  BUT you deserve to be heard.  Don't feel bad about calling.  Maybe if one of the other coordinators is available if yours isn't,  you can speak with them and mention the same thing.. "I'm sure she's busy, I'm just feeling a little in the dark..." and see if that gets some information to come your way?

Take care!!!
Nicki

[rdr321]

Thank you guys for your input.. Phil Said "cool your jets" . After 43 years on the planet I have to admit my engines run a little warm. 
But i also am going to have a organ removed from my body where there could be complications. I need to feel like they will take care of me and not have doubt in me that they will return calls if I am having problems after surgery. If the coordinator is not returning calls now, what about after? I will very gently try to explain her my concern. That is not very easy. They don't make it easy for us donors do they? It is almost funny.And monday I will call the other transplant center near my home. It is Loma Linda in Redlands Ca and I think it has a good name. I will see what they say.  Thanks Rick

[sherri]

Rick,

As a non directed donor you have flexibility that directed or family donors don't always have. Part of the process of being interviewed by the doctors, nurses, social workers etc. is to examine your medical suitability and emotional state. It is also a great opportunity for you to see what the professionals are like. Are they attentive to your needs, do they return phone calls, how have others done at this hospital. Do your research as you would if you were having a medically needed surgery and not an elective procedure. Look how much time and money is spent into attracting mothers ready to give birth.  Fancy birthing suites, tour of the hospital, classes on what to expect, special waiting room, rooming in with baby. Donors don't demand as much as most of them just want to see their recipient get better but it would be a different market if we started to expect top excellent care instead of settling because professionals are busy.

I believe people do act within character so if there is a complication or an emergency will these people be able to help you. Could you depend on these doctors and nurses to help get you through the surgery both physically and emotionally. Are there services available to you that they can recommend. Speak to other donors at the hospital, especially ones who did have trouble and see how their experience turned out.

Best of luck,

Sherri

[ohtobeahayes]

PS-  I of course only donated at one hospital and therefore have only had experience at one hospital but I wasn't ignored even once.  There are transplant clinis that do better, and ones that desperately need to up the ante on their donor care. Just sayin', because it's possible that the other clinic might do way better by you.

And you are right- if you're going unanswered now, what about after?  If a conversation with your current clinic doesn't make you feel better in your gut, checking the other out might be the best thing to do?

We're with ya!

Looking out for you is the most important thing you can do!

Nicki

[PhilHoover]

Really, and seriously, I do understand them.   But remember, these people/professionals have LOTS on their plates....If you are completely unhappy with your living donor coordinator, try to find another medical center that will be more to your liking.   I would highly recommend the University of Alabama-Birmingham Hospital...it was MARVELOUS beyond words.

They serve people from all over the world....not just folks in the South.

[Snoopy]

     This thread definitely hit a chord with me.  I've been in the process for about ten months.  Individually, the transplant coordinator and secretary are very nice and friendly.  However, I'm having some trouble with communications.  I presented to the transplant center as a non-directed donor candidate and, after an initial battery of medical testing, the center referred me to an NGO (non-governmental organization) in my area that helps match up donor candidates with recipient candidates.  Eventually, the NGO matched me up with a very nice, medically-suitable recipient.
     The problem is, I never know whom to contact.  My calls and e-mails to personnel at the transplant center are usually ignored (or, at least, I rarely get any response to them; it may well be that the staff do act upon what I send them).  Sometimes, I get answers to my questions about scheduling appointments, etc., not from the transplant center personnel to whom I initially directed them, but from my intended recipient, or from the director of the NGO.  Even that doesn't necessarily upset me, but I'm never sure to whom to address my questions.  I am inclined to believe that a lot of the problem is overworked staff, and can forgive a lot--as Phil pointed out, they've got lots on their plates.  Still, after reading this thread, I think I'll try to establish some standard operating procedures to replace the seemingly haphazard manner in which things are moving.  So, Rick (and the others), I hope this at least helps place things in perspective.  You all are clearly not alone. 
    It may be just part of this high-pressure, high-workload organizational beast, but it's definitely worth following the suggestions offered earlier in this thread to politely, patiently, request some help in working through the system.  Hang in there! Snoopy

[Fr Pat]

Dear Snoopy,
       I don't mean to upset you unnecessarily, but keep in mind that there are still many transplant hospitals that do NOT accept transplants from strangers, but only from relatives or close friends of the recipient. It might be wise to make sure that your intended recipient's hospital knows that you are a "stranger"  and is open to accepting you. There have been cases where a transplant from a "stranger" has been called off even after the surgery was scheduled because the hospital or surgeon had second thoughts about accepting a stranger, or had suspicions that payment had been promised. Best to double-check.
   Fr. Pat

[Snoopy]

Dear Fr. Pat,
  No worries about being upset!  Actually, in my case, I originally presented myself as a "stranger". (Personally, I consider myself a "walk-on"--somebody who wanders in to try out for the football team without having been recruited).  I contacted them, explaining that I wanted to donate, but had no special candidate in mind.  The surgeon and the transplant coordinator explained possible ways of finding a recipient, and the coordinator referred me to the organization that ended up making the match.  So, they were aware of my status.  And I don't take any of this personally.  Let's say that my mild exasperation is causing me to work on my ability to place things in perspective.  In fact, my intended recipient is much calmer than I am about all the delays.  If he can stay cool, I should be able to as well!
  Be well, Snoopy