I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Restorer on August 06, 2011, 07:44:36 PM

Title: Finally on the list
Post by: Restorer on August 06, 2011, 07:44:36 PM
UCLA finally got tired of dragging their butts and made me active on the transplant list. Not that it matters whether I'm on it now, 2 years ago, or 3 years from now, with the program in So Cal that makes my wait time retroactive to the date I started dialysis. They say I still have 7 or more years to wait until I can get a cadaver kidney.

Time to work on multiple listing.

 I'm moving up to Sacramento soon. My doctor recommended UCSF, though it's a 2 hour drive from where I'll be. There's UC Davis - I don't know much about them yet. He also recommended the short wait at Mayo Clinic in Phoenix. I don't quite know how I'd work out transplant things there, being so far away.
Title: Re: Finally on the list
Post by: boswife on August 06, 2011, 08:22:37 PM
Well this is my best news of the day  :2thumbsup;  Im really happy for you and surly hope you keep in contact through all this and let us know when you 'get YOUR call'   :yahoo;   Sure give you something to work towards and dream about REALLY happening.  I'll be happy for you and will be waiting to hear the news...   :grouphug;
Title: Re: Finally on the list
Post by: jbeany on August 06, 2011, 08:44:00 PM
Don't let the distance stop you!  My ONLY choice for a transplant hospital was 5 hours away.  I'm in Michigan, and transplant centers are few and far between.  You can still make it on time - I did!  (And the friend driving only broke the sound barrier by a little bit on the way there, I swear...)
Title: Re: Finally on the list
Post by: okarol on August 06, 2011, 09:43:26 PM
 :clap; Congrats!
Title: Re: Finally on the list
Post by: Restorer on August 06, 2011, 09:48:28 PM
Thanks.

5 hours wouldn't be a big problem, even 7 hours (from where I'll be to UCLA) is doable without too much trouble. But Sacramento to Phoenix is 13-14 hours. I don't know about that. Plus finding a place to stay (getting set up with relatives?).
Title: Re: Finally on the list
Post by: Ang on August 06, 2011, 09:51:32 PM
congrats on the listing :thumbup;
Title: Re: Finally on the list
Post by: rsudock on August 06, 2011, 10:29:14 PM
Awesome!!! Glad you are listed!!!

xo,
R
Title: Re: Finally on the list
Post by: edersham on August 07, 2011, 11:12:31 AM
Mayo Phoenix was an awesome  experience for me. They do have lodging at whats called the transplant house for
$25 dollars a day or less if your in real financial need. The difficult part is once someone gets a room there they stay untill they are released from needing to be within an hours drive from Mayo. So available space is hit or miss. The place is awesome though with community kitchen, living room, library and a private room for you and your caregiver. Its less than 1/2 mile to the hospital. Average stay after kidney tx is 6 weeks.

 Best wishes for your process.
Ed
Title: Re: Finally on the list
Post by: Poppylicious on August 08, 2011, 11:00:26 AM
Sorry, missed this.

YAY!  So pleased that you're finally active.

 ;D
Title: Re: Finally on the list
Post by: cariad on August 08, 2011, 11:29:49 AM
Fab news, Restorer! And I would contact Mayo and get the details on what Ed suggested. I have heard nothing but positive things on here about that hospital.

As I said in another discussion, UCSF is the way to go in NoCal. They are my absolute favourite hospital, although I guess they would tie with Northwestern now. Sadly, the wait at UCSF has topped ten years for type-O, so please see what you can sort out in Phoenix.

Best of luck!  :bestwishes;
Title: Re: Finally on the list
Post by: billybags on August 08, 2011, 11:43:18 AM
So pleased for you.
Title: Re: Finally on the list
Post by: Jean on August 09, 2011, 12:37:58 AM
Such good news!!!! Best of luck to you.    :clap;
Title: Re: Finally on the list
Post by: Restorer on August 09, 2011, 10:46:13 AM
I realize that I don't know enough about multiple listing in another state since I have Medi-Cal. I'm going to have to look into that.
Title: Re: Finally on the list
Post by: okarol on August 13, 2011, 06:00:04 PM
I realize that I don't know enough about multiple listing in another state since I have Medi-Cal. I'm going to have to look into that.

You could list in the San Diego area, the wait is shorter. Scripps Green, Sharp, or UCSD Hospitals do transplants.
Title: Re: Finally on the list
Post by: Restorer on August 13, 2011, 06:09:45 PM
That's another option I was considering, but I don't have an easy home base near there. Then again, it might not be much less convenient than UCSF, which will be 2 hours from where I'll be living. Scripps is 2:45 from here (my mother's house).
Title: Re: Finally on the list
Post by: okarol on August 13, 2011, 06:20:12 PM
Oh yes, I forgot you were moving. The wait list in the UCDavis procurement area is shorter that UCSF.
Scripps Green has small dorm-like apartments for patients after transplant - very cheap - but it's still a lot of travel for follow up in clinic the 3 months following the first month where it's bi-weekly.
Title: Re: Finally on the list
Post by: Restorer on November 09, 2011, 07:41:33 PM
I finally have a transplant evaluation appointment with California Pacific on December 1st. They have a Roseville clinic, which makes things much easier. The waiting time calculator (http://www.ustransplant.org/Calculators/KidneyWaitTime.aspx) says they have a 6-year waiting period, but they say UCLA has an 8-year waiting period, when it's actually closer to 10.

Still hoping to get my live donors actually evaluated here.
Title: Re: Finally on the list
Post by: Desert Dancer on November 09, 2011, 10:32:27 PM
I realize that I don't know enough about multiple listing in another state since I have Medi-Cal. I'm going to have to look into that.

Congrats on getting active on the list, Restorer! Sorry my congratulations are so late; I'm not sure how I missed your post. It's really great to see your face again.

I hate to say it, but if Medi-Cal is your only insurance I'm not sure Mayo will even talk to you. To the best of my understanding they do not take Medicare or Medicaid.

But if you do get listed there you can stay with us!
Title: Re: Finally on the list
Post by: kellyt on November 10, 2011, 12:14:58 AM
 :clap; :yahoo; :bandance;
Title: Re: Finally on the list
Post by: Restorer on November 10, 2011, 12:31:30 AM
I realize that I don't know enough about multiple listing in another state since I have Medi-Cal. I'm going to have to look into that.

Congrats on getting active on the list, Restorer! Sorry my congratulations are so late; I'm not sure how I missed your post. It's really great to see your face again.

I hate to say it, but if Medi-Cal is your only insurance I'm not sure Mayo will even talk to you. To the best of my understanding they do not take Medicare or Medicaid.

But if you do get listed there you can stay with us!
Oh, Medi-Cal is my third insurance, not my only one.  :rofl; But it's good to have all three usable if I go through something as expensive as a kidney transplant. Apparently Mayo Clinic does bill Medicare (http://www.mayoclinic.org/billing-sct/medicare.html), but they don't take Medicare assignment, so they charge more than they might otherwise, and it might cost me more personally depending on how my secondary insurance covers the rest. That's why having the third insurance would be useful, but I didn't expect them to accept Medi-Cal, as it's out-of-state.