Lpenrod,
I'm trying to understand this paragraph from the article. Can you help me...It reads:
But others worry that the changes could reduce the overall number of organs available for transplants or inadvertently further shift the matches between organs and recipients by affecting living donors, who are not regulated by UNOS. Some relatives who would have donated a kidney to a young patient might now decide not to, for example, putting pressure on other relatives to donate kidneys to older family members.

Is it saying that (hypothetically) my relatives may change their mind about giving my son(24) their kidney and think about giving me (56) their kidney instead because my son would not have had to be on a waiting list for years and years? (?)
Confused,
Jess

I'm not really sure how to read that.

I think it is saying that live donors may then feel more empathy for older recipients and tend to give to older recipients more, thus countering the effect of shifting more deceased kidneys to younger recipients.

I also read that they are proposing you could not receive a kidney from a deceased person more than 15 years younger than you are. Thus if I were 65 and on the waiting list, I could not receive a kidney from someone less than 50 years old; they would give it to someone younger.

Whow, what a controversy this will cause. As if there isn't enough problems to go around with living donations, this will raise holy hell.
I read the entire article twice and I do believe your conception of it is about right on the money. I believe it said they will wait until April 1st before making a decision. Let your voices be heard!

Norma...

Here's the link so you can read the entire proposal (about 41 pages) and then post your own comments directly to UNOS/OPTN about the draft (same organization; UNOS is the face to the public/OPTN is the data portion). I believe there are contact numbers on the website so you can also call or contact them via email and ask questions and get clarification on any areas of confusion (they're located in Richmond VA); some of it is a bit confusing and I've been involved in this process for nearly 4 years and still can't figure parts of it out!

http://optn.transplant.hrsa.gov/news/newsDetail.asp?id=1447

This will NOT reduce the availability of organs in the US, absolutely not. In fact the hope is it will INCREASE the use of available organs and ensure fewer go to waste. But what it will do is most likely prevent a 65-year old man from receiving a 15-year old's kidney, which happens far more times than you think (and also means a 15 year old often gets a 40-year old kidney and will end up needing a second transplant down the road because kidneys do have a finite life span).

It does not afffect living donors at all; that is an entirely different process and if you have a living donor--great! I would hope the living donors are willing to donate to those who are in need now and the next generation will consider donating to those who will need a kidney in 20+ years. About the ONLY way the living donor process is affected is IF a living kidney donor is in need of a kidney (very rare); they would have a bit of a priority for a transplant, which makes some sense as they've already selflessly given the other one away!

Keep in mind this is a draft of a draft, comments to which are requested by 1 April. This is NOT the final proposal/comment phase, so this isn't necessarily what is going to go into effect (we've already been through 2 rounds of this and there have been some major changes, due in large part to the PKD community and how loudly we speak!) This process has been going on for at least 4 years that I know of, and will probably take at least another year before it reaches the final proposal/formal comments stage.

There are some key talking points I received last night from my local organ procurement organization, the Washington Regional Transplant Community (WRTC), where I am a member of their speaker bureau:

"The ongoing problem with the organ allocation system is that there are simply not enough donated organs to meet the demand of those who need them. It is the position of WRTC that the organ rationing discussed in the article [Washington Post link in initial post] would not exist if all Americans were registered as organ, eye and tissue donors. There are more than 110,000 individuals on the national waiting list for an organ transplant, yet only approximately 27,000 organ transplants are performed each year. 18 individuals, young and old, die per day while waiting for an organ transplant, yet only 40% of licensed drivers in the United States are currently registered on their states registries. Individuals who live in the Washington, DC, metro area should register to become donors at the DMV (or MVA) whenever obtaining or renewing their drivers licenses, or online at www.BeADonor.org/Register. If youre already registered, encourage your friends, family members and colleagues to do the same.

Anyone can go to the BeADonor website and then click on a link that will take you to a page that lists all the states and from there, register to be an organ donor (and for military, active duty, dependents and retirees, you can designate your organ donor status on your military ID card as well).

Everyone can be a potential donor, even those of us with PKD. While our kidneys may not be great, for some of us, a young PKD kidney is a hell of a lot better than what we have now! Plus we have livers (and yes, they are using some livers with cysts, just not the massive polycystic livers) and pancreas, hearts, lungs, corneas, etc. Don't write yourself off just because you have PKD! Let the professionals determine if your organs and tissue (including that transplanted kidney) can provide life to someone else. Become an organ donor yourself! And make sure your family understands and is on board wtih your decision. While your drivers license and the paperwork you sign for your military ID card are legally binding, families, in time of distress, have been known to override the stated wishes of the individual and sign away the rights of that person to donate their organs, even perfectly healthy ones that would save lives. So please, make it a point of discussing this with your family so they know how adament you are about being a donor and will support your wishes, come what may.

As a side note, you'd be amazed at how few transplant recipients ever signed up to be organ donor in the first place (and even after they're told they can still be an organ donor, they still don't sign up). If you're willing to take, be willing to give as well. Become an organ donor. Heaven knows we need them here!

Ruth

Yes, a friend sent this to me yesterday. I really don't know what to think about it. On the one side, I have been MUCH MORE HEALTHY in most respects than others I see in the waiting room, but I am, what? 62, I think? I don't pay much attention to my age, and haven't felt 62, at all, until this last several months. So, I don't know what to think. There sure is a LOT of changes going on.

Recently another woman who is A+ blood type, has contacted my transplant center to offer a kidney, and they did not discourage her, but said something about "sensitizing" me to her kidney. I totally don't understand what that means.

CHeatherS,
Here is an explanation of "sensitized" and what they can do.
http://www.georgetownuniversityhospital.org/body.cfm?id=15&UserAction=PressDetails&action=detail&ref=221
I like this living donor arrangement.

Wow Jessica, this is amazing. I have to say, my brain is quite addled with my health, and I am not thinking clearly. But this really is amazing! This surely must be what my friend was being told by the transplant center, wow!!!! Very interesting.

THANKS
Heather

I have heard this before and figured it didn't just go away. I am hopeful that someday the answer to our shortage will be an opt out program instead of our current opt in system.
It's easy to be torn on this topic because our illness typically progresses to end stage renal failure in our 50's.
To me, it does seem to make sense that the younger, healthier kidneys go to the younger and healthier first. But, I am selfish and want the best kidney when it's my turn. Bottom line is there is a huge problem and there has to be a way to make better use of the kidney's that are being donated.

Jenny

Yeah...mixed is right. I understand matching ages to the age of the recipient, to an extent. (meaning a 15 year old could live for another 60 years so why not give him a shot to have a kidney that will last 30 years?) And if a 60 year old received a kidney from a healthy 60 year old donor (perhaps who died in an accident) that would make sense considering they would have similar life expectancies. but making someone wait longer on the list when they are already older and sicker seems like a terrible idea!

My live donor is just 3 years younger than I am. I thought about that at the time of transplant. If all goes well with the stem cell trial, I could conceivably have his kidney for the rest of my life. So in a case like mine, it is good that we are about the same age. His kidney should last about as long as I do!

I confess; I am not a organ donor because I thought nobody would want my kidneys/liver or my bad eyes. Thanks for educating me, Ruth, and, good to see you back. My driver's license is up for renewal this year - ya'll know what I'll be doing!
Lisa H

I think the best thing is if this were to work both ways. That is a 20-year old recipient would also not receive a kidney from a donor over 35 years old. That way there is no age descrimination either way. It just makes sure younger kidneys tend to go to younger recipients and older kidneys tend to go to older recipients. That seems fair. Maybe that is what they are aiming for.

Talk about having mixed feelings.
While everyone may have different views on this, bottom line is that it is a shame that we have not been able to educate enough about organ donations, and that is why we are having this discussion. There just arent enough organs, and that is why we may argue about what is fair and what is not, and that is why we are put in a position to choose between the young and the elderly.
Back in the 80s, I remember news about a baby girl getting a transplanted heart from some type of gorilla (may have been a monkey, I dont recall).I think this was performed in California. I must have been about 16 or 17. All I cared about then was baseball, girls and Van Halen, so the least of my worries was a transplant. But I remember clearly that it was big news, and the fact of a baby girl being kept alive thanks to this transplant just blew my mind away. I remember following every day on the news and cheering for this baby girl (which really was a very unusual thing for me to do at that time). She lived for about a month or so (give or take a week), but doctors were really confident that this was going to help save many lives in the future. Since then, I made up my mind about being an organ donor (again, very unusual thing for me at that time). Little did I know that more than 25 years later I would have a daughter with a disease that someday may need a transplant to stay alive. A connection there? Probably not, maybe just coincidence.
But my point is that we need to educate people. I made a life time commitment back in the 80s thanks to the media. We need to spread the word around. We need people to learn and understand that once they die, they have a choice of either let their organs rot in a box, or to save a live, or actually, to save several lives. Transplants are not perfect, and many times there are serious consequences, but recipients are people that have suffered so much, may times for so long, and are not expecting a perfect life, they just want a chance to live.
I probably wont be able to be a living donor because I have high blood pressure, not even to my own daughter (or so I was told). But I could still donate once I die, and so can most people. Just imagine, to save a life. And at the end of our lives, what a great way to go, what an achievement.
We are all responsible for passing the word around, and although we can not force anyone into it, I am sure that many will be able to care and understand.
PKDAD