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Long Lost Member
blee713
Total Posts: 2
Registered on: ‎01-13-2011

Kidney Donor

I donated a kidney to my husband in November 2006....We are both doing just fine, and now I am interested in becoming an advocate for kidney donations...any suggestions?
Long Lost Member
blee713
Total Posts: 2
Registered on: ‎01-13-2011

Kidney Donor

 
Frequent Advisor
xenablue
Total Posts: 1,775
Registered on: ‎11-02-2009

Kidney Donor

I'm not certain the diabetic message forum is the place to do this, but someone else might have a different suggestion.




Dx 2008 - A1C 8.6
Current A1C 5.5
Trusted Contributor
morrisolder
Total Posts: 10,548
Registered on: ‎11-28-2009

Kidney Donor

Elizabeth,

Congratulations to you for having done that for your husband--and for wanting to do that for others. We need more advocates like you!

One way you can help advocate is simply by telling your story--how it worked for you and your husband, what was involved, the costs/benefits both financial and health-wise and so on. Most of us here knew little about diabetes before diagnosis, and we know a whole lot less about transplants. As people with diabetes, however we should know at least some of the basics.

People who need donations generally have to wait a long time, and diabetics who need kidneys are a large part of that group.  Not only can live people donate organs, which generally function well for twice the years of cadaver organs in the recipient, but generally the recipient's insurance will cover the expenses involved.  And like beta cells, where we start out with more than we really need, donors do fine with just one kidney after they donate.

Currently the waiting list for kidneys in California is in the range of 4-7 years. That is usually 4-7 years of dialysis, and sometimes people die before one can be found for them. Meanwhile people die every day with perfectly good organs that could be the gift of life for others, but are not because they have  not filled out organ donation cards. In California you keep that with your driver's license.

Encouraging more people to donate, as you seek to do, would definitely save lives and enhance the quality and longevity of many others. Two broader 'solutions' that I have read about make a lot of sense to me, and are worth advocating for.

First is the idea that people should have to opt out of organ donation instead of opting in. Right now, if you don't say you are willing, when you die it cannot happen.  But it could be done the other way--where if you don't say you are not willing, then it would be assumed that your organs could be used to save lives after you die. This simple change might pretty much eliminate the shortages that plague organ transplant programs, while allowing those who are unwilling a chance to decline to participate.

I also heard of a new program in France that goes partway there. People who sign up to be organ donors when they die will get priority should they ever need a donation while they are living. This also seems like a common-sense, just approach, although perhaps not effective as the one above.

And of course since donations of living organs work better than cadaver donations, these should be encouraged as well. Kidneys are obviously an easier one than, say, a heart, but there may be other possibilities as well--I am not sure  whether there are  others that fall into that category.

As  to  how best to advocate for these changes in law and/or awareness, you might start by Googling "organ donation advocacy," reading there and seeing what you come up with.

One other fact about kidney donations that many people are not aware of is that the donor does not need to be a biological match to donate a kidney to someone else who needs it. The organ transplant databases have reached the point where if your husband needs a kidney, an you are willing to donate, they will find a match for your kidney amongst people with similar unmatched donors waiting. Person A donates a kidney to person A1, but it doesn't match; however person B has offered a kidney that doesn't match their intended donor B1. And person C has offered a kidney to person C1. What can happen is that kidney A works for person B!, while kidney B works for person C1, and kidney C works for person A1. So when person C offers to donate, suddenly three transplants are made possible. It could be a simple swap, but there have been instances where a willing donor has triggered a chain resulting in as many as a dozen transplants.

My guess is that Elizabeth's kidney was not an exact match for her husband, but that this was how she was able to donate a kidney for him...

Morris




Morris

Diagnosed Type 2, with an A1c of 11.4 in 2003; averaging a 5.0 A1c since then with diet, exercise and Glipizide XL + meds for blood pressure and cholesterol. 
A bit dated, but scroll down on this page if you want to know more ...


Valued Contributor
maplesyrup
Total Posts: 4,364
Registered on: ‎11-14-2009

Kidney Donor


This is a great thing to hear about Elizabeth and I hope you and your husband continue to do well.

I think it is a good fit for a diabetes message board.

I had occasion to look for a room in a hospital in another city.  I finally got advice from a nurse who was tending patients in a dialysis ward.

I thanked her and mentioned that I was newly diagnosed with diabetes and asked if she would mind telling me what percentage of her patients were diabetic.

"Nearly all," she answered, "take the best care you can."

I have listed myself as a potential donor on my license.

Good luck in getting the word out whereever you can.
Dianne
Dianne

Diagnosed as type 2 in 2005 with an A1c of 9.1

Started with metformin and a low dose of an ARB for blood pressure. Added a sulfonylurea (a med that helps my pancreas produce my own insulin) Also a low dose of Crestor to lower my cholesterol.
After 7 years I could no longer tolerate metformin so am doing my best to keep control with a max dose of the sulfonylurea and lots of walking, some swimming.
Contributor
evilnala
Total Posts: 364
Registered on: ‎07-19-2010

Kidney Donor

Great discussion.

One other point, it is also important to know the law in your state.  In my state, the body becomes part of the estate.  This makes it less important to sign the driver license, and VERY important to make sure that the person making decisions about my estate knows and respects my wishes.

I never quite understood why someone would opt out of organ donation.  Certainly, I can't imagine I'd be needing them for anything after I die.
Advisor
annieO
Total Posts: 385
Registered on: ‎03-02-2010

Kidney Donor

I am a strong advocate for organ donation of any kind and wish more people would consider it. Unfortunately, I think there is some education lacking in this regard. People have all sorts of notions of what it entails.

Sadly, I myself cannot be an organ donor--nor even give blood, which I have wanted to do on numerous occassions--due to other health problems. I think there are a number of others in a similar position. Unfortunately, I can see this (people being unable to give for one reason or another)  being one argument used by an opponent to the"opt out" option.
Dx 11/09; Glimepiride & Onglyza

"Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."
from The Velveteen Rabbit by Margery Williams
Established Contributor
fyre522
Total Posts: 1,438
Registered on: ‎10-31-2009

Kidney Donor

There are also donation options for people who have other health problems.  For example, I cannot donate blood or the majority of my organs (as they are pretty much all less than ideal for a transplant) but my body makes an insane amount of WBC (white blood cells) and my adopted mother is extremely low on those since she takes Chemo and a few other things, and so even though we are not biologically related, and I have a plethora of ailments, I can still donate some of my white blood cells to her.  This works out great for 2 reasons: 1. She gets more WBC that she really needs, and 2. I get RID of a decent amount of my WBCs that I have been hauling around mysteriously for years now.  We are 2 different blood types, but the same RH factor, so since it's White cells and not Red cells or plasma, we're good to go!

There are plenty of options out there for people who want to advocate transplants and assistance for those who need them.  Poke around the 'Net some, or look up the website of your local hospital and read through about their criteria in performing organ and/or blood transplants/transfusion.

~Rae~ (Type 1.5, aka LADA)

 Treat every stressful situation like a dog... if you can't eat it or play with it, just pee on it and walk away...

Advair, Albuterol-Isopro mix, Bystolic, Colchicine, Combivent, Fentanyl,   Fish Oil, Furosemide,  Humulin R U-500, Hydroxazine, Iron, Klor-Con, Lipitor, L-Lysine, Magnesium,  Metolazone, Oxycodone, Spironolactone, Topamax, Trilipix, Uloric, Vitamin D 50,000,  Zoloft. 

(Hey, if you took all these meds, you'd need happy pills too!)