Looks like I'm getting one!!

[robertscz]

So my fiance went to get her final tests done the past few days... Everything turned out "absolutely perfect" according to the Dr's!!  We were worried because of her size she may not be able to donate directly to me, but the surgeon said no worries, just my creatinine afterwards may be a "high normal"..   They forgot to give her an echo test so she needs to go back next Wednesday for that, but she is already scheduled to be presented on Jan 12!!!  Surgery can take place as early as 2 weeks after that.  I am beyond excited as many of u know the feeling!!












Sp mod Cas

[cassandra]

Fantastic news Robert!!


Lots of love, luck and strength to the both of you


   

[iolaire]

That's good news, hope that all goes well.

[kickingandscreaming]

Aren't you a lucky guy!  I wish you both the best.

[Paul]

Great News.

[SooMK]

Wonderful!

[PrimeTimer]

Sounds like Santa did a pre-tour and hurried down your chimney! This is great news.  Perhaps you'll have to leave Santa a few extra cookies...You get a new kidney and your fiance gets a healthy husband for the new year. Congrats! 

[MooseMom]

Keep us updated, OK?!  How exciting!!

[Xplantdad]

Thanks for the text Robert. Sorry I haven't been on here much, we've been busy (See my other post )

We are happy for you-and as always, feel free to call with any questions, too!

Congratulations...what a great Christmas gift. 

[smartcookie]

Yessss!  Awesome news!  I hope everything goes as planned and you and your new bean are happy together!

[X3nt]

Any news? I am eager to hear what happened. I hope you're doing well.

[robertscz]

Hello, havent logged on in months so just thought i'd update.  my fiance got denied and its bullshit and we are pissed.... she is on anti-depressant meds and the hospital knew this back in december prior to her doing ANY tests, it was written out on a donor questioneer.  she went and passed all of her tests, the center had her go get a third party pschyc eval, which she did and the dr wrote this very nice note saying that she is in great mental health, a fantastic candidate for a donor and excited for us to get this done and move on with our lives.  her coordinator recieves this letter "everything looks great i will present you this friday".  we are beyond thrilled because we think this is over.  they call her on friday, they have denied her because of "past history of depression".  are you F'n kidding me?!!?!  you knew about this in december, it is now march and after you request she get a third party exam, which she does, you still deny her for that!?!?  unbelievable. 

so heres the update.  we are switching hospitals.  i went in for evaluation at the new place last tuesday, i was placed on their list thursday.  they will take my fiance and all of her tests from the first place and they will take my co-worker and all of her tests as well.  my coworker was denied because a spot urine test showed 90mg protein.  after which 2 prior tests showed 6mg and 9mg.  so clearly the 90 was a bogus test.  they did not care.  i also have a third living donor going to the first hospital june 4 for her final testing, however i am almost thinking about telling her to cancel and just try to go to the new place seeing as though the first place seems like they are doing everything in their power to not help me out.

so thats where i stand.  1 donor scheduled to go on june 4 for testing, and then 2 donors who will go to the new place with all of their old tests and hopefully get approved there.  this is a long, terrible run that i've had and we are NOT HAPPY with the first place AT ALL!!  so fingers crossed we will know more very shortly! 

[iolaire]

Sorry to hear of the troubles (and corresponding stress), good luck at the next center.

[Xplantdad]

Hi Robert, thanks for updating everyone. Glad we were able to text  the other day. Keep your head up!

[LorinnPKD]

Robert, thank you so much for the update.  As someone who is starting to look for a live donor (my estimated wait on the cadaver list is 7-9 years for my blood type, awesome), this is really helpful information -- I really haven't gotten much information on that process yet.

Wishing you smoother sailing at the next center.  Please keep us updated!

[cassandra]

Better luck at the next place Robert.


Love, luck, strength, Cas

[kristina]

Hello Robert,
Thanks for the update. This experience you both went through sounds a bit cruel and I do hope you have better luck in the future.
Best wishes to you both from Kristina.

[robertscz]

Hello Robert,
Thanks for the update. This experience you both went through sounds a bit cruel and I do hope you have better luck in the future.
Best wishes to you both from Kristina.

thats been a common response from people.... xplantdad even texted me that it sounded "criminal" what the did... and in a sense it was.  they had all of us expecting to hear good news and set a date.  this affected not just me and my fiance, but my family, friends and work as well.  the thing that got us was the very beginning the hospital has every potential donor fill out an online form.  and if that form reveals anything that may affect that person going forward they are immediately disqualified.  She wrote down the meds that she is on for depression on that form in OCTOBER of last year.  she still was accepted for her tests, passed all of her tests and was then required the third party evaluation.  it just makes no sense.  i had another donor lined up and ready to go but the hospital will only test 1 at a time so we had to wait from december until late march for her to finally be denied. so this could have been resolved much earlier.  my first donor who went was told that this hospital is one of the "most cautious" in the country.  i will not name the hospital now, but the difference between the first one and the one i am going to now are NIGHT AND DAY in the way they handle things so far.  keep your fingers crossed for me, we have multiple things going on at once right now, it only takes 1 to work out, right?!?!

[robertscz]

sooooo, 3 more donors tested and STILL WAITING!!!   this is beyond frustrating, i dont know how to look for the positive or the end in any of this.  i had another donor go to Tampa to be tested the first week of june.  entire time she was up there, every dr told her she was the "perfect candidate" yada yada.  she even set up a tentative date for july 13.  her case goes before the medical review board, and 1 freaking nephrologist looks at her ct scan, and i shit you not, on the official report wrote down "i cannot dismiss the chance of there possibly being a kidney stone".... WTF does that even mean?!?!   she was told that the surgeons argued with this nephrologist for an hour but of course, everyone on the medical review board has to agree, so she was denied. 

we then moved hospitals over to the cleveland clinic florida.  this same donor went over there in july, didnt even have to repeat any tests because she had them done so recently and passed them all.  Surgeon was on board with everything, numbers were perfect ect ect.   well the freaking radiologist there, said he "will not over rule someone elses previous readings".   so the report from tampa has to be used at the cleveland clinic also!!!   they told her that she was not being denied, and was able to do a repeat ct scan 6mo from the previous one which puts us at dec 1. 

in the mean time, there is ANOTHER donor going to cleveland clinic at the end of this month.  i never in a million years thought that this would be so difficult especially seeing as though i am lucky enough to have living donors. 

anyone know what the odds are of a living donor being approved once they go through the extensive testing?? 

[kristina]

Hello Robert and many thanks for the update.
I am very sorry for you and it all sounds a bit strange what you are going through and I can't quite comprehend...
I wish you better luck in the future and please keep us updated.
All the best good-luck-wishes from Kristina.

[Xplantdad]

Oh Robert, this is truly disheartening. I would get with the patient advocate at the current hospital and also try and set up a meeting with the chief of staff there-and explain your situation to that person. Demand that another CT scan be done by the head of the department. Also in our previous texts I supplied you with some info regarding kidney stones and transplantation.  Take that with you as well. Be as informed as you can be.

Good luck and let me know what happens....

[robertscz]

yes, its been extremely frustrating to say the least... and i forgot to mention in my last post.  the cleveland clinic actually gave her a "stone test" which tests the minerals that would make up a kidney stone, and all values were in the "normal" range.... yet still denied for "possibly kidney stone"...     i then took that info and emailed my coordinator in tampa to let them know that even though the radiologist may have saw something "that could possibly be a stone" that this test should negate that.  well, they took the new info back to the medical review board and the donors coordinator called her and said "they are sticking with their original decision"  it makes NO sense. i dont understand how i read articles about so and so donating to so and so and they are often times the only one to offer to get tested and have no issues along the way. 

[MooseMom]

This is just bizarre.  I don't understand what is happening here, so I'm not surprised that you are so frustrated.  It seems like you are being stonewalled at every turn.  I don't get it.

[Xplantdad]

My guess is that the hospital likes racking up lots of charges for testing...and/or they have a low score for successful transplants and don't want to transplant anyone that isn't "perfect"...and could possibly lower their scores more.

Robert, get in touch with the patient advocate at the hospital and let us know how it goes

[robertscz]

i spoke w/my coordinator about the "possible kidney stone" bullcrap that they pulled and she said that they have to be 100% certain that down the line nothing is going to happen to the donor.  which i understand completely.  however, when the surgeon says there are no stones, and then a stone study is given and confirms no stone minerals...... thats like saying "we cant approve this donor because in 35 years, she could possibly have a heart attack"...  it makes no sense to me at all and im growing more and more numb to the entire situation.  it feels like this is my life and this is how its going to go from here on out. i have very little emotion over anything anymore