The Gift of Life
I’d like to introduce you to two extraordinary women and share their amazing story. (Originally posted Christmas Eve, 2015).
“How did the two of you meet?”
“Through the Long Lake Artisans Cooperative. We would hang out and were always talking art as Patricia is a photographer and her husband is a painter and I own Incapahco Artisans. Louisa moved to Long Lake as a child and Patricia, originally from Long Island, vacationed in Long Lake for over 20 years before moving here full time 4 years ago."
Patricia has Polycystic Kidney Disease. The disease causes numerous cysts to grow, shutting the kidneys down because they’re unable to function properly.
"It’s genetic.” Patricia tells me. "If one parent has it their children have a 50% chance of getting it. We are 5 siblings and 4 of us have it. My father had it and died at the age of 51. When I was 40 years old I thought I had gallbladder issues so I went to the doctor to get it checked out. The doctor did a sonogram and said my gallbladder was fine but my kidneys had cysts on them and that’s how I found out."
"When I got home I told my siblings and they went and got tested. Turns out that all of us but the youngest brother had it. My oldest brother received a transplant 15 years ago and is still doing OK. My second oldest brother had a transplant but it didn’t work so they had to remove the kidney and he went back on dialysis. He collapsed and died one day after a dialysis treatment."
"People think that dialysis is the cure-all but it’s not, it’s a temporary fix that will help sustain you until you can find a suitable donor, IF you can find a suitable donor. People don’t realize how dangerous and difficult dialysis is on the body."
Patricia had kidney disease for years prior to moving to Long Lake. "My GFR (Glomerular Filtration Rate, how they measure kidney function.) had been gradually going down. “When it gets to 20% they put you on the waiting list for a cadaver donor. At 10% they usually put you on dialysis but I was feeling OK and I was functioning OK so when my GFR dropped down to 10% (out of 100) and then down to 8%, I was miraculously able to stay off dialysis."
"It wasn’t until my GFR numbers dropped low enough for me to be put on the waiting list that I mentioned to Louisa that I had kidney disease. Not too long after that in December 2014 I attended a conference in Long Island about being on the waiting list, what to expect etc…."
"When I came back I was telling Louisa about what I had learned and it was then that she initially started to consider going through the testing to see if she was a match."
"She had mentioned it a couple of times but I didn’t think anything of it because while it’s a nice gesture, there is a lot involved and what are the chances that a non blood relative donor would be found in this little town? But I thought it was sweet that she was being so supportive so I gave her the number to call but put no pressure on her to follow through.”
"She actually discouraged me in the beginning" says Louisa. "Probably in part because she was being kind and didn’t want to inconvenience me and probably in part because the chances of being a match to her was so minuscule."
Since initially speaking with Patricia and Louisa I’ve learned that there are six antigens that have been identified as important markers for transplants and are inherited from our parents. Because of this, siblings are the best possible option for transplants with a 25% chance of being an ‘exact match’ and a 50% chance of being a ‘half-match’. (1)
A perfect match with an unrelated donor carries the odds of 1 in 100,000 or a probability of .00001. Now imagine the odds of finding such a donor in a town the size of Long Lake with the population of 711?? (2)
Louisa continues, "So in January 2015 I called the number and talked to a coordinator who explains the process and sends me the initial information packet He was really good at letting me know what all was involved and told me right up front that there is usually something that arises that keeps donors from being a match. He was being honest and probably wanted me not to get my hopes up too high as the chances were so very slim."
"The first test was a blood test and tissue typing to which we were a perfect match. After that there were more tests and then more tests. With every test that we passed there were more tests and if any test came back questionable, there were more test to investigate that further and rule any roadblocks out before proceeding with more tests. It was a little daunting but we just remained focused on the end result." (See Donor Medical Eval – 3 & 4)
Patricia says "I gave her every opportunity to back out but she was determined and was so amazing about it all."
Louisa - "The donor coordinators and staff were continually asking ‘Do you know what you’re doing?’ in addition to all the psychological testing you have to go through to make sure that not only are you aware of what you’re doing but that you’re able to handle it."
"We had what was supposed to be final testing in May but the tests showed my stress level was too high which was elevating my blood pressure and we were told that I would not be able to donate at that time. We were going into the summer season and I had a lot going on at the shop which wasn’t helping my stress level so surgery was put on the back burner. They told us to wait until fall and we would test again."
"I was absolutely devastated. I was so afraid that waiting would cause her (Patricia) to have to go on dialysis. My church did a great job at keeping us in their prayers during all of this."
Patricia – "I wasn’t as upset. How could I be upset, look at what she was willing to do for me. I knew that whatever happened it would all work out and things would be OK.”
By September Patricia’s kidney function had dropped to a mere 8% but miraculously she was able to stay off dialysis. When they went in for testing, everything looked good and they were given the go ahead for transplant surgery.
So how do you get ready for surgery? “With more tests of course", they both said laughing. "There were test down to the last minute" Patricia says, "Not to mention Louisa had meetings with the psychiatrist up until 2 days prior to the transplant to be absolutely positive that she was OK and understood the possible ramifications of losing a kidney."
I’m happy to report that their transplant surgery was in September and as of this writing, both women are doing amazing!
What do you hope people take away from your story?
BOTH – "We hope that they will consider being a live donor but if they aren’t ready to be a live donor that they will at least sign their donor card and tell their family of their wishes."
"You can’t take it with you (when you die) and being a donor could potentially save more than one life."
DID YOU KNOW:
- New York is ranked 50 out of 50 for registered donors. Part of this is due to the extra paperwork required. Whereas most states it’s not always as easy as turning your driver’s license over and signing the donor area, in NYS you must submit an online form + print out another form + fill it out & sign it and then mail it in before you’re a registered donor. CLICK HEREto get started.
- Immediately upon transplantation that 97% of live donor kidney’s are fully functional vs 50%-60% of deceased donor kidneys. (5)
- There are currently 122,403 people waiting for lifesaving organ transplants in the US. Of these, 101,189 are awaiting kidney transplants. (as of 10/8/15)(5)
- The median wait time for a kidney transplant is 3.6 years.(5)
- A new patient is added to the waiting list of a kidney every 14 minutes. (5)
- 12 people die every day waiting on a kidney.(5)
Please visit the National Kidney Foundation at www.kidney.org
Please share this story.
- http://columbiasurgery.org/conditions-and-treatments/compatible-living-donor-kidney-transplant
- http://www.city-data.com
- http://www.ucdmc.ucdavis.edu/transplant/livingdonation/donor_med_eval.html
- http://www.giveakidney.org/the-donor-operation-before-during-and-after/
- https://www.kidney.org/news/newsroom/factsheets/Organ-Donation-and-Transplantation-Stats
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