Scheduled for 3-way transplant 7/10---NOT!

[dlady64]

I'm SO...shit.  I don't know even know how to describe how I feel.  I can't quite feel anything.

The doctor sent an email (!!!) yesterday confirming that while the Tampa donor is checked out and viable--they cannot have surgery for 2-3 months.  Naturally, we don't know why or what the circumstance are.

We've been working with the Emory transplant center in Atlanta and I can't say enough about how little I think of their services.  My transplant coordinator apparently went on maternity leave--without notifying me or letting me know who my new coordinator would be.  When I called yesterday, I spent 45 minutes being transferred around until I'd just been worn down enough to hang up.

And now, we have this delay on the surgery and no one actually contacts me from the transplant center.  My husband gets an email because he happens to have the doctor's email address and he sent an email asking what the status of our donor was--since surgery is supposed to be on July 10.  This is June 25th, folks.  My husband had to contact the folks in Buffalo and let them know that the surgery was delayed.

Let me back up.

We got a call about a month ago from Emory that when they did the crossmatching between my husband and I--oops, it was a mistake.  They classified him as a positive crossmatch, but he's really a negative and can, therefore, donate to me.

We spent an entire afternoon trying to decide whether to stay with the Paired Donation program--because we BELIEVE in it and we want to help the other two people--or pull out and do a simple transplant from hubby to myself.

Well, we decided to stay in the 3-way.

He's already been worked up, the Buffalo person has been worked up and now the Tampa person has been worked up.

OK, I'm beginning to realize I'm pissed off.

Now, I just want to do the transplant with my husband.  I honestly tried to be altruistic and work toward the greater good--but this is driving me crazy.  I can't stand all the waiting and uncertainty.  It's going to cost thousands of collars (out of pocket and non reimbursable) to do the 3-way, and frankly, I've lost my enthusiasm.

But, guess what?  I still haven't heard anything official.  Hubby sent an email asking how long it would take to make arrangements for him to donate directly to me yesterday but we haven't heard anything back.

What am I supposed to do?  My mental health is shaky at this point.  My life is on hold.  We're tight on money.  I'm wondering if we can drop Emory and contact Piedmont.  Can't they just forward all the medical workups to the new hospital and we can move forward?

I'm so discouraged.  And I feel stupid.  I KNEW that anything could happen.  There are countless similar stories on this very board.  How do you do this without getting your hopes up--even when you're telling yourself, "I'm not getting my hopes up, I'm not getting my hopes up..." and then you realize you actually HAVE.

[xtrememoosetrax]

Oh my god, dlady, my heart goes out to you, as I am stuck in a somewhat similar purgatory -- waiting on a 3-way that is not happening.  Most of the time, I feel too angry to write about it in any kind of coherent or civilized manner.  One thing I can say is that yes, I agree with you that the paired donation thing is a great THEORY, but I really question whether the infrastructure is in place to support the PRACTICE of it.  I'm so sorry, dlady.  When you posted last week, I got really excited and encouraged at the prospect of a 3-way exchange that really WAS going to happen; now I am crushed on your behalf and once again discouraged on my own account.  For what it's worth, I feel your pain; god, do I ever! 

[rose1999]

Oh what a dreadful blow.  I couldn't understand the problem at first - a 2 or 3 months delay - because of the difference in the American and British way of writing dates, I read 7/10 as 7 October (I did think they'd given you a lot of warning!). But it's a disgrace that you haven't been told anything officially and I really do feel for you.  Whatever we tell ourselves, we all get our hopes up, it's human nature.  I hope you will get better news soon. 

[pelagia]

I am so, so, sad to hear this news.

If the hospital made a mistake and your husband can donate to you, it seems that you have been basing your decision-making on incorrect information and that was beyond your control.  I think most (all?) would agree that you owe it to yourself to rethink your decisions for that reason alone.  How quickly do you need to decide?  Sometimes time itself helps to bring clarity to complex issues.

As far as the system goes, I think xtrememoosetrax got it right with this statement:

One thing I can say is that yes, I agree with you that the paired donation thing is a great THEORY, but I really question whether the infrastructure is in place to support the PRACTICE of it. 

The treatment you are getting from your transplant center/team seems unaccepatable. Do you have any other options?  The statistics for all of the kidney transplant centers in the US are online, so you can compare:

http://www.ustransplant.org/csr/current/csrDefault.aspx

When we were exploring the possibility of a transplant for my husband, we originally went to a transplant center at a bigger university hospital.  Nothing wrong with the place, but, it just didn't seem like the right place for my husband (and they don't do laparoscopic surgery for the donor, but that's another issue). Of course we all want great doctors, but don't we all also want a team that has the sensitivity to see the person, as well as the "medical case", through the process?  Maybe not all surgeons are good at this part, but someone on the team should be.  We ended up at a smaller hospital (not university/teaching) because we felt good about the entire transplant center team.  It was a really good decision for us.  We had complete confidence in the surgeons.  The rest of the team has been great, too.  And, when we call people they call us back quickly. 

[Sunny]

You made your 3 way transplant decision based on the fact it appeared your husband was not a match. At the time it was the best option for you.
Since it has been determined your husband is a viable candidate as your donor because the hospital screwed up, then I think you owe it to yourself
to go for the straight donation with your husband. Your health is your priority and I don't think you should feel bad about backing out of the
3 way paired donation. Also, I'll bet your husband would be happy to know you are the one with his kidney.

[monrein]

I'm so sorry about your disappointment dlady.  It's almost worse to get hopes up and have them dashed than not to have them in the first place.  I'm hoping that you'll find your way out of this and somehow get a kidney.

[Chris]

Concider looking at another transplant center and if you still want to do a swap of donors, see if the new transplant center will set it up locally instead of going out of state. Think hard and make a wiser decision.

Sorry to hear about your bad luck and I thought my surgeon was the only idiot..

[KT0930]

This goes beyond frustrating and maddening. I'm so sorry you've dealt with such a setback and terrible inadequacy on top of it! I admire your desire to do the paired donation, because it does seem like a good program, but if it's going to cause this much stress, you're going to do more harm to your health in the long run than the good feeling can make up for.

Also, consider switching to Piedmont. I've had a great experience there, and they're very easy to work with. Keep in mind, you don't just work with the team getting to the point of transplant, they're going to be part of your medical team for the life of the transplant...if they're difficult to work with and don't communicate, it will only become more of an issue following the surgery. Good luck with whatever you decide with both aspects!

[stauffenberg]

Perhaps the worst form of discrimination in modern society is that by the healthy majority against the minority of chronically ill people, and this comes to expression in all the manifold ways the medical bureaucracy mistreats sick people.  When I spent a week in the hospital a few years ago, I counted 20 major errors that were committed by the staff in my treatment, and that was just the errors I could catch!  Unless you assume subconscious hatred against the sick by the healthy, the degree of inefficiency and error in hospitals and the medical system generally is inexplicable.

[Beth36]

Bless your heart!  What a predicament.  I don't know what to tell you but good luck with whatever you decide.  I hope those people get their shit together soon.  That is just so not cool.  It still amazes me how people can be so lax and just basically unorganized.  This isn't Wal Mart, this is someone's life here!  UGH!  I hope you get that transplant soon.  When we had our issues with the first transplant hospital, they did forward the records to Mayo but Mayo had a few additional tests my mom had to take.  It was no biggie but we just had to wait until they had the drug my mom needed and she had to wait her time in line on their list.  The one bit of advice I can give is, do what is best for YOU at this point.  Be selfish, it is YOUR life!!  Good luck!!

Beth

[thegrammalady]

boo, hiss. what a bummer. my mother always says it will work out for the best in the end. GAWD! i hate it when she says that. i hate it even more that she's ususally right!!! praying for nothing but the best for you.

[glitter]

my heart goes out to you- what a bummer.....it seems so unfair all the way around. I hate it that so many medical professionals are so much less then professional.


 

[Sluff]

I can understand your frustration at this point. Hope things come through for the better. 

[pelagia]

thinking of you