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Author Topic: Hello from Indiana  (Read 4135 times)
ladyhawk526
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« on: June 12, 2009, 08:42:47 PM »
I am new to this site although I have been on it several times as a guest.  I learned at the age of 17 that I would eventually need a transplant.  In 1983 my mother gave me a kidney which worked for 15 years.  After kidney failure again, I was diagnosed with cancer and had to wait five years before getting back on the list.  When I did get back on the list in2003 I waited 3 months and a cadaver was found.  That transplant never worked and it was a DISASTER!  I was in the hospital for approximately 7 months!  I am lucky to be here today.  So, I finally felt recuperated and wanted to get back on the list only to find I had cancer once again.  The hospital I where I want to receive my transplant only requires a 2 year wait instead of 5 to be cancer free.  I just got the clear two months ago.  However, living in Indiana there is only one insurance company that will cover me since I am under 65 and I cannot afford it.  So, no insurance, no transplant :stressed; and thats my story.
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Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #1 on: June 12, 2009, 08:48:53 PM »
Welcome to our community!  Glad that you decided to post after being a guest.  It means that  you already know that this is the best place for information and support.  I am sure that you have seen that this is more than just a website - it is a genuine family  :grouphug;  sharing and caring.
So sorry that things are not working out for your transplant.  Hope that you get this worked out to your benefit soon.  I take it that you are on dialysis now.  If so, is it HD or PD?
Keep reading and keep posting.   Let us know how you are doing.





Bajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
Pam
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« Reply #2 on: June 12, 2009, 09:24:14 PM »
 :welcomesign;
Ladyhawk   You will find all of the support you need here. Both of my daughters live in In. Fishers and Greenwood.

Pam 
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Joe Paul
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« Reply #3 on: June 12, 2009, 10:31:50 PM »
Welcome Ladyhawk, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
MandaMe1986
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« Reply #4 on: June 13, 2009, 04:56:00 AM »
Happy to have you  :welcomesign;
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

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willowtreewren
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« Reply #5 on: June 13, 2009, 05:09:03 AM »
Hi, LadyHawk.

Yours is a sad story, but at least there is dialysis!  :clap;

There are so many stories here, but also lots of wonderful, helpful folks, and even plenty of humor!

 :welcomesign;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
lola
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I can fly!!!
« Reply #6 on: June 13, 2009, 05:55:48 AM »
 :welcomesign;
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www.caringbridge.org/visit/ottomachado
monrein
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« Reply #7 on: June 13, 2009, 06:09:39 AM »
 :welcomesign;  Glad you joined us.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
peleroja
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« Reply #8 on: June 13, 2009, 08:45:04 AM »
Wow, sounds like you've been through the ringer.  I certainly hope things get better for you soon! 
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #9 on: June 14, 2009, 05:28:30 PM »
Hi and welcome.  I also have cancer (multiple myeloma) and am waiting till I'm in remission at which point I start the 2 year wait to be considered for a transplant.  You have given me such a buzz when you talked so positively about only having to wait 2 years!  I never realised some people had to wait 5!  Look forward to getting to know you.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
Romona
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« Reply #10 on: June 14, 2009, 07:15:06 PM »
 :welcomesign;
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willieandwinnie
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« Reply #11 on: June 16, 2009, 03:23:16 PM »
 :welcomesign; Ladyhawk. I'm so happy you decided to join us. Tons for information and even more support here. I'm sorry to hear that you have been through so much. Are you on dialysis? If you are then you are entitled to Medicare and they will pay for another transplant. Stick with us and you will never feel alone. Please post often.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
ladyhawk526
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« Reply #12 on: June 16, 2009, 08:48:49 PM »
Yes, I am on dialysis and I have been on Medicare for since 1998.  What I cannot get is a supplemental insurance.
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TeenHatesDialysis
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« Reply #13 on: June 27, 2009, 12:45:42 AM »
 :welcomesign;

You are amazing! Look into www.cota.org It is Childrens Organ Transplant Association, but there are quite a few adults with sites on there. I pay $700 per month for my family insurance through work and then another $100 per month for medicare for my daughter on dialysis and another $280 for prescription co-pays. It seems that all of her meds have the max $50 co-pay and medicare part D would not be much help on most of them. Also, my daughter is only 15 years old and doesn't qualify for any social security assistance. I take her to dialysis once per week, but have to pay someone else to take her the other 2 days (1 hour commute each way) and stay with her. I plan to be out of state for my daughter's transplant soon (not finalized yet) and am required to be at Stanford for 100+ days so I will be out of work for quite a while. Our insurance doesn't cover kidney transplants at the only hospital that performs pediatric kidney transplants in an 8 state region so we have no choice but to go out of state.

Check into www.cota.org or I think another great site is payitforward. Both will help you get your story out there and fundraise to help pay for insurance, hospital bills, etc. My daughter has a great group that has raised almost $40,000 in 8 months. It is hard enough having the health issues, you don't need financial stress.

Best of luck to you and I am glad that you joined this great site.  :grouphug;
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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
Maxridex
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« Reply #14 on: June 27, 2009, 02:03:51 AM »
 :welcomesign;
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