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Author Topic: Made the tx list today!  (Read 3611 times)
Willis
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« on: May 09, 2012, 07:22:09 PM »
Finally, I'm on the transplant waiting list! I first started the process in Dec 2010. They wouldn't talk to me at all until I started on PD and qualified for Medicare which was May 2011. A whole freakin' year wasted with appointments and paperwork. Now I get to wait for real at least...

 :bandance;

 
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jbeany
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« Reply #1 on: May 09, 2012, 07:28:47 PM »
 :clap; :clap; :clap; :yahoo; :yahoo; :yahoo;
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
smcd23
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The patient, the baby and the donor - October 2010

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« Reply #2 on: May 09, 2012, 08:53:56 PM »
 :bandance;

Happy for you!! Wish you the best of luck and hope your wait is short!
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Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
jeannea
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« Reply #3 on: May 09, 2012, 09:12:54 PM »
Yay!!! That's great that you finally did it!
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MooseMom
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« Reply #4 on: May 09, 2012, 09:26:24 PM »
Quote from: Willis on May 09, 2012, 07:22:09 PM
Finally, I'm on the transplant waiting list! I first started the process in Dec 2010. They wouldn't talk to me at all until I started on PD and qualified for Medicare which was May 2011. A whole freakin' year wasted with appointments and paperwork. Now I get to wait for real at least...

 :bandance;

 

This is terrific news, but I don't understand the reason for the delay.  Could you explain it more?  Why wouldn't they talk to you until you started on PD and qualified for Medicare?  Did you perhaps not have private insurance?

Anyway, congratulations!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Poppylicious
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« Reply #5 on: May 10, 2012, 03:44:48 AM »
 :yahoo;
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
paris
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« Reply #6 on: May 10, 2012, 07:42:06 AM »
Great!  We'll wait with you and then celebrate together when you get the call.    :2thumbsup;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
jeannea
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« Reply #7 on: May 10, 2012, 08:14:39 AM »
The Medicare thing appears to be somewhat standard. I had private insurance through COBRA when I did my testing for the list. They knew that would run out and I would have to be on Medicare. They wouldn't make me active on the list until my Medicare was in place. I did manage to get them to put me on as Stage 7 where I accrued time but couldn't be called.
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smcd23
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The patient, the baby and the donor - October 2010

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« Reply #8 on: May 10, 2012, 11:52:48 AM »
That's funny how every center is different. My so is on status 7 at one facility because he only has Medicare and they don't feel that's adequate. Which is why we're switching...,
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Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
highway61
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« Reply #9 on: May 10, 2012, 04:09:44 PM »
I have to say that I agree with Poppy,

 :yahoo;

Kinda says it all.  :-)
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Willis
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« Reply #10 on: May 10, 2012, 09:48:15 PM »
Quote from: MooseMom on May 09, 2012, 09:26:24 PM
Quote from: Willis on May 09, 2012, 07:22:09 PM
Finally, I'm on the transplant waiting list! I first started the process in Dec 2010. They wouldn't talk to me at all until I started on PD and qualified for Medicare which was May 2011. A whole freakin' year wasted with appointments and paperwork. Now I get to wait for real at least...

 :bandance;

 

This is terrific news, but I don't understand the reason for the delay.  Could you explain it more?  Why wouldn't they talk to you until you started on PD and qualified for Medicare?  Did you perhaps not have private insurance?

Anyway, congratulations!

Thanks everyone!

Concerning the early delay...no I did not have private insurance. I was a member of a medical co-op that covered major medical like my fistula surgery but it only pays after the fact. All payment arrangements had to be made ahead of time and a lot was out of pocket until the money came back from the co-op which sometimes took months. The transplant center wanted an insurance card (or Medicare) or $15,000 CASH up-front just to get on the waiting list and a $250,000 BOND for the ENTIRE AMOUNT OF THE TRANSPLANT!

Well, needless to say, I don't have that kind of money laying around. So I had to wait about 5 months until I started dialysis and Medicare and then they were all smiles. The rest of the wait since then was mostly just getting through all the appointments to check off all the boxes on the waiting list application. It seems to me to be a somewhat deliberately planned "hoop jumping" process to weed out those who aren't assertive or demanding enough to see it through...not to mention what ever percentage of people die before they even get on the waiting list. I guess that's what some call "Darwinism" in practice.

 
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Cordelia
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« Reply #11 on: May 11, 2012, 12:01:44 PM »
Welcome Aboard.       :cheer:

Congrats!          :clap;
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Jean
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« Reply #12 on: May 12, 2012, 12:31:47 AM »
Those are dumb Medicare rules, but, I am very happy that you are on the list. Good luck and I hope it comes soon.
 :yahoo; :yahoo;
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One day at a time, thats all I can do.
Joe
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« Reply #13 on: May 12, 2012, 04:31:07 PM »
Congratulations Willis! :yahoo; :yahoo; :yahoo; :clap; :clap;
That is great news! Hope you don't have too long a wait.
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