Now it's my turn to RANT!

[kellyt]

You know, for a disease that is SOOOOO concerned with high blood pressure, my transplant coordinator sure knows how to raise mine!!!!!!!!!!!!!  (joke.  I'm fine, really)   

As most of you may know I took my husband's 24-hr urine in on Monday morning as requested.  Once the results are back they'll go straight to the doctor and then he'll be sent to "committee" no matter what the results.  The "committee" meets at noon today.   Okay, fine.  I've been both excited and nervous waiting for today.

This morning my husband receives a voice message from my coordinator stating "I just found out that part of your testing had to be sent to UTAH, so you won't be going to "committee" today.  However, the results should be back either tomorrow or Friday.  I'll take them directly to Dr. XXX and see if he'lll make a decision so you don't have to wait another two weeks."  Dr. XXX is on the "committee".        Like that's gonna happen.

She's been a coordinator at this hospital for 9 years and she's never done this particular test?   Can you say frustrating?  I really like her and this hospital, but the clock is ticking.   I'm concerned that she's going to call me next Wednesday, the day before we leave on our relaxing cruise, and tell us that he's been denied.

It's one thing after another.   Thank God I'm not on any liquid restrictions.       ha ha

[xtrememoosetrax]

  Ugh, I'm so sorry, Kelly. I have faced a couple of somewhat similar scenarios myself while in the donation process and can totally understand how frustrating it all is. All I can say is, hang in there and try to go with the flow. Easier said than done, I know. You do have my sympathy. 

"I just found out . . . "  grrrrrr.   

[stauffenberg]

The whole approach of the medical profession to the issue of living kidney donors is based on the assumption that they should do everything possible to protect what they deem to be the potential donor's possible interest in NOT donating, as though this were the only correct ethical approach.  As a result of this assumption, the slightest medical, social, or psychological problem is treated as an excuse to deny the donor what should be his own absolute right to decide what to do with his own body parts.

There are two errors here.  First is the arrogant attitude that the donation of the organs of a living donor is a decision belonging to the medical profession rather than to the person donating, which presumes that the body of the donor belongs to the surgeons and nephrologists.  This notion of one person's body being under the control of another has been recognized as illegitimate ever since Abraham Lincoln's Emancipation Proclamation in 1863.  People are allowed absolute freedom to make foolish contracts, to choose to marry the wrong person, or to have children even though they are alcoholics or drug addicts, so why shouldn't they be permitted by the establishment freely to decide for themselves whether the risks and benefits of donating one of their organs is to their advantage or not?  If a parent wants to rush into a burning building to rescue his child, no authority has the right to prevent him, even if the chances of his success and survival are tiny.  So why should any authority have the right to deny a person to take an equally dangerous risk of donating an organ out of love and idealism even when this is medically contra-indicated as too risky or unhealthy for the donor?

The other mistake is to assume that 'harm' is best avoided by not doing anything to risk the health of the donor, even if this means denying the transplant and letting the potential organ recipient languish on dialysis and die.  But in fact, the harm should be assessed as the composite product of the outcome for both donor and recipient, and if the total amount of human health and well-being of both of them together is likely to be greater after the donation than before, then the donation should proceed, even if this means that the health of the donor will be severely risked or negatively impacted.

[okarol]

We had similar experiences with our first coordinator. I felt like we were constantly either nudging him forward or chasing after him, trying to get answers. I eventually realized that he had most of his energy focused on the deceased donor transplants (they were more urgent as they had to be handled as they happened, it could be the middle of the night or weekends) so the living donor cases were always on the back burner. When we switched hospitals there were 2 coordinators, one devoted to deceased donor transplants, the other to living donor transplants. This was a huge difference in knowledge and time availability and effort. Our coordinator made each recipient feel like her priority, and she took care of every detail promptly and efficiently.

Keep ranting, asking questions, nudging forward. If it's meant to be it should happen. You're doing all you can at your end.

 

[Sunny]

In some cases I think Stauff is right about the issue of donors being in control when wanting to donate to loved ones. In a husband/wife situation,
or parent/child situation, people will do anything to assist those in need and should have the right to do so. However, outside of those special bond
situations, I can see why Transplant Teams are so particular about donors. In those instances, the need to ensure health safety for donors is
paramount. Why the difference? In my opinion the bond of love should over-ride any decisions doctors may make, as long as there is a better
than reasonable chance of survivability for both the donor and donee. If Kelly's husband wants to donate to her and he is reasonably healthy and
the chances for success are better than average, then I say let him do it. Out of Love he is willing to take the chance and the doctors should not
be turning him down unless there is a huge risk factor. Sometimes it seems like transplant teams just nit-pick away at every conceivable reason to
deny a donee the right to donate when they should just accept the fact that when it comes to minor health issues, love outweighs everything for
those who have the bond of love.

[Lori1851]

AMEN SUNNY!!! Couldn't have said it any better
Lori/Indiana

[Ang]

this  is  probably  gonna  sound  weird,     i've  taught  myself  to  expect  the  worse, when  its  good  i  don't  feel  deflated i know
works  for  me.
i  know  its  hard  cause  you  can't  help  but  let  yourself  dream  and  wonder  when  its  a transplant


EDITED: Fixed smiley icon - okarol/admin

[donnia]

I always felt like I was having to nudge my TC at Baylor, so I found another hospital to go through.  I understand they want to protect the donor... hey I expect and respect that..... but comeon.... taking a whole 9 months to test one of my potential donors....  you can take that paperwork and shove it.  That reminds me.... my husband is going to call my TC at Baylor and let her know she can clear my application out of her corner... if she can find it ... I got my transplant last week!

[kevno]

After I was back on Dialysis for ten years the TC decided that she wanted to see each patient once a year So I went for the first year, a total waste of time. Told them not to bother me again with this stupid appointment. Have no a queue who the TC is now and do not care.

[kellyt]

I appreciate everyone's support on this.  It's just so damn frustrating.  I understand unpredicted delays and hurdles, but pa-leeze.  I've now tested three donors since Feb 2008.  I heard from my first two donors that they had been denied a day or more before I heard from my coordinator.  I understand her calling the donor and saying you have been declined, but then she should hang-up the phone and IMMEDIATELY call the recipient.  In the case of my first donor, I gave her two days to contact me.  Finally, after not hearing from her I called her and said "I hear they have declined my brother".  WTF?

Also, after my husband listened to her voicemail on Wednesday a.m. he called her back and left a message saying he only heard bits and pieces of the message because he dropped his phone and it's not working properly.  He then asked/told/authorized her to call ME and give me the full message.  It's now Friday and I have yet to hear from her.   

[Robby712]

Every TC I've ever had has been a mess.  But on some level I sympathize with them...I suppose they are giving bad/negative news about 80% of the time. 

[kellyt]

I'd have to agree with you, Robby.  I know she'd much rather tell me good news.  She was really excited about my husband's results until they saw the CT.  She really wants him to be the donor.  I just dread starting over again.

I feel sto stupid even complaining about this, really.  There are people here who haven't even had someone tested - no one has offered, etc.  I feel fortunate that both my brothers and my husband even tested.  I just think I'll take a break if they deny my husband and just bite the bullet and start dialysis when my doctor saiys Go.               

[okarol]

The transplant coordinator is not authorized to give the donor update or status to anyone but the donor, to protect their privacy. That's why they don't call the recipient.