Janet Sue's Kidney Transplant Fund
Janet Sue Gibson Gray. I love music, dancing, singing and spending time with my...did I say adorable? ...3 grandchildren! Asa, who turns 4 this month, Vera who just turned one and Wesley who is 4 months old! I also have super supportive husband, 3 handsome, smart & talented sons who made incredible choices for wives! Well, two of them so far! My 3rd son is not married and is busy working towards PA school. He's getting lots of experience with my multiple hospital and ICU stays!
Being on dialysis since May 5, 2015 has not been easy on the whole family. Going to dialysis training 6 hrs a day for 2 weeks and somebody had to drive me as my vision was affected and I was too weak to drive. All the doctors appts and sidebars like a kidney biopsy that was scheduled to be outpatient that ended up 3 days in the ICU then 4 more days on the regular floor. 7 days in the hospital, blood transfusions and more due to a puncture to my renal artery. Then another surgery to put my dialysis port in. This Sept, I mysteriously had a spontaneous spleen bleed that kept me in the hospital another week, more blood transfusions (9 total at this point) and has landed me in a hemotologist office for testing to figure out why. They still don't have answers. We still don't know how this all happened in the first place!
I'm now labeled Type II diabetes with end stage renal failure. Although, to this day, I have never had an A1C or any labs that labeled me diabetic. I was originally diagnosed with MODY diabetes, a rare form of diabetes that is genetically derived. When it became evident that I would need a transplant, it then became necessary to do the genetic testing to confirm or rule out this 15 faceted condition in order to test children for transplant candidates. Insurance did not cover this $6000 at all - even after lab & doctors wrote letters to my insurance stating the medical neccessity.
Gibson has gone thru an intensive testing to see if he could be a match. Catherine, his wife, was tested, too. She was not a match. Gibson decided to move forward and test to be a "paired donor". Unfortunately, we've just gotten the news that he is not a match for that program either. The only way I know all of this, is he told me. The Piedmont Transplant folks are prevented by HIPPA to tell who is being tested or any of their status.
Situations with this chronic condition keep mounting up. The emotional part as well as the physical. BUT I've decided that life is choices but sometimes my only choice is my attitude so I'm trying to handle my "new normal" being "chronically happy"!
My bills are presently mounting and I've been told at transplant workshops and by medical personell, that it keeps mounting. My non functioning kidneys no longer tell my bone marrow to produce red blood cells and it takes 120 days for a new red blood cell to grow to their productive maturity. Basically, anemia is just around every corner. My muscles loose strength. It's harder & harder to climb the stairs. I'll soon need a chairlift for my stairs. Insurance does not cover this either.
My after transplant anti-rejection meds, I've been told, will be between $2000-$3000 per month. Some, but not all of this will not be covered. I have a $3000 annual deductable with a copay of 20%. For the rest of my life.
well, sort of. The federal government requires that the day after I have a transplant, I have to go on Medicare no matter my age. The problem with that is, it doesn't cover medications and if you pay extra to get prescription coverage, it doesn't cover a lot of the meds I will need.
One thing I know for sure. My loving God is present with me in every ambulance ride, during every surgical procedure, every night on my dialysis cycler, every bill I receive...everything will be alright.
Please know that I mostly covet your prayers.
i truly believe my Father is my ultimate healer and provider. With this being said, I plan to commit 10% of all funds raised to research efforts in diabetes and kidney transplants.
I can do all things through Christ who strengthens me
Just a quick update. Gibson, my oldest was not a match for me and it was advised for him not to be a kidney donor at all due to some medical issues. We just recently found out that Taylor nor Schafer, my 2nd and 3rd sons, are not matches for me either but they're being further tested to see if they could become a 'paired donor'. Paired donors offer their kidney to someone else but only if I get a kidney at the same exchange.
The closer blood relative, the greater chance to NOT reject the transplant. The longevity projections are directly related to distance in blood relativity. In other words a parent , sibling (both of which I have none at this point) or child is your top option. Then it begins to move outward to nieces, nephews, cousins, etc. there are many success stories with total strangers being matched up, even cross country! Most everyone can match someone!
Both my daughter in laws have been tested as well as my niece Katherine. Unfortunately - no match. My blood type is O, but that isn't the whole thing that matters. Everyone has antigens. Multiple antigens, and they need to match or be compatible, too. Here lies the challenge!
I know there is a brand new beautiful healthy kidney out there for me. I know that God has a purpose in my journey.
I cannot thank each of you enough for participating in the fund raiser. We collected $10,990!!! I'm now going to apply for the Georgia Transplant Foundation's matching program. Prayers for that, too - but mostly know how much this has been appreciated!
Oh, one more thing. Due to HIPPA Laws, Piedmont Transplant cannot discuss with me who has called or contacted them or undergone any testing on my behalf. Please let me know if you have called or had any testing. I want to place you on a special prayer list! There are hundreds of people needing kidney, bone marrow, tissue and more transplants. Please consider being an organ donor!
Thank you again from my heart and
Happy New Year!!!
We've recently found out that Schafer (like Gibson & Catherine) are not a match. Schafer has agreed to move forward in testing to become part of the "paired donor" program. If he is accepted in that program, he could be matched with someone else to receive his kidney and I move up the list for a donor. He would not give his kidney until a donor for me is found. They've had donor chains that involved up to 10 & 12 people!
Gordon & I pray that each and everyone of you, enjoy your friends & family this holiday, to the fullest...and remember, the BEST gift you could ever give, is the gift of LIFE! Be an organ donor!