Help us find a kidney! Give the Gift of Life!

[cap]

Last edited Thu May 8, 2014, 05:45 PM - Edit history (1)

My husband is on the kidney transplant list at Penn Transplant and we need help. Usually I am a pretty self reliant person, but this is one of the times I need to ask the universe for assistance. We are looking a kidney donor for him. Or, some help with our Indiegogo campaign to send him to a transplant center with a short wait list.

A kidney preferably of type O but any blood type will do. Our insurance will cover the medical expenses for the donor completely.

My husband doesn’t have any immediate family as they have all died and we don’t have kids. We have one cousin come forward to donate but he doesn’t qualify. My husband would really like to avoid dialysis as he does not have a spleen which means his immune system is compromised. Mortality rates on dialysis are pretty high the older you get. Not having a spleen means that he can't easily withstand infections that will further impair his kidneys.

Given how hard finding a kidney donor is, he is looking to travel to another transplant center for a new kidney. Unfortunately, Penn Transplant has a 5-8 year waiting list for a kidney of blood type O. However, if you go to other transplant centers in Wisconsin, Kentucky, or Tennessee, the wait list is much shorter. He could get his kidney within a year.

When the transplant center calls, he would have 1 hour to decide if he wants a kidney and 3 hours to get there which means taking an air ambulance from Philadelphia. We would have to stay near the transplant center for 6-8 weeks for post op care.

We are doing a campaign on IndieGogo(https://www.indiegogo.com/projects/save-the-geek-get-a-kidney/x/2127499) to try and raise money for expenses for our donor (if we find one) or for the trip to another transplant center.

What money we do not use from our IndieGogo campaign, we plan on giving to efforts to develop the artificial kidney. There are thousands of people waiting for kidneys. With the epidemic of diabetes, it will only get worse. People are dying every day for a kidney. If an artificial kidney is developed, there will be no wait lists.

Also, we could use help from people who know social media to help us get the word out.
Anybody who lives on Facebook, or twitter, etc. could really help us out a lot. People who use Facebook have a 30% chance of finding a kidney. So your help really matters a lot.

If people would like me to verify information, please let me know and I will be happy to work with the moderators so everyone feels comfortable.

[redwitch]

1. kicking for more exposure.

Best of luck!
Young friend just got her liver transplant. It is a bumpy ride for certain.

[cap]

2. thanks

[CaliforniaPeggy]

3. Is there an age limit on donors? n/t

[cap]

6. Every Transplant Center is a bit different

I believe it is age 70 at Penn. The field is changing everyday and each transplant center is different.

[CaliforniaPeggy]

9. Thanks!

[Ms. Toad]

19. Likely no more than 55.

Live donors generally have different age limits than cadaver donors. (I have not specifically looked at kidney donor age limits - but I am intimately familiar with age limits for live liver donation centers - which is around 55 for the health of both parties.

ETA: Penn is 60 for a live donor (with older considered on a case by case basis)

[cap]

24. Penn is very good, but very conservative

Their wait list is very long for kidney with blood type o.
Other centers have older age limits ...lakenau and Jefferson will do up to 70. Tree are a few reports of people donating in their 70s. There is a report of an 83 year old donating. But this is by far the exception. Not counting on elderly donors. Just hoping for an altruistic stranger. If you go to kidneymitzvah.com you can read about an amazing woman who saw an ad in the paper and donated a kidney.

However, if you go to wisconsin, Kentucky, or Tennessee the wait list for deceased kidneys is much shorter. My husband could get his kidney within 287 days maximum in Kentucky. We just have a crazy system for allocating kidneys nationwide with some regions not getting as many kidneys as others. Big urban centers have the big wait lists. We would much rather do the transplant at Penn but I don't think my husband would survive dialysis for very long, he has a compromised immune system due to a surgical mistake where he lost his spleen.

[NightWatcher]

4. Kick and rec. I too have kidney disease. I hope you can find a match

I'm afraid I'll be in your shoes soon enough too, I've got lupus nephritis. Please keep us up to date so we can help you out.

DU is a great community, we'll help you spread the word and look for donors.

[cap]

8. If you can Facebook or Twitter or Email

that would be a great help not only for us but in the future for you. You will need the network you build now and it is much easier to ask for other people! It's very humiliating to have to ask.

[Jane Austin]

5. Done.

No message.

[cap]

11. thanks

virtual happy dance!

[Scuba]

7. Interesting discussion on this topic on Wisconsin Public Radio this morning ....

One guest argued that we should allow people to sell organs. The other guest had a much better idea ....


Instead of an "opt in" program for those wishing to be organ donors after death, make it an "opt out" program for those who don't wish to have their organs donated after dying.

Interesting stat: About 5,700 kidneys are donated each year from the living while 7,500 are donated by the deceased. That second number should be lots higher.

Good luck to your husband and family. My daughter has been waiting five years.

[cap]

10. If you can make it to Kentucky

the maximum wait list is 287 days for blood type O which is the hardest kidney to find. Don't know if thats an option for you.

[Scuba]

12. Thanks. My daughter has many complicating factors. She may never be matched.

[cap]

13. I will keep her in my prayers

also, that is why any extra money I raise will go towards the artificial kidney. It's a long way off for those devices to come to market but when they do, all this agony will end for many many people. I hope she makes it.

[Scuba]

14. The implantable artificial kidney could save tens of thousands. Hope it's fast-tracked.

[cap]

15. Every day they are making progress

and artificial kidneys are a big priority at FDA

[REP]

22. Actually B- is the longest wait time

B- with FSGS (the disease starts manifesting in the transplanted kidney during the tx surgery)

[cap]

25. Kidney donation is complex

Try to keep my story simple. As you well know there are many factors involved even beyond blood type.

[Egnever]

20. Wow that number is appalling.

I don't understand peoples reluctance to be an organ donor.

[cap]

26. Fear and lack of knowledge

However, people don't realize that they can save more than one life. If the donor is compatible, they become part of a chain which can save many lives. I think the longest one has been 22.

http://www.kidneyregistry.org/living_donors.php?cookie=1
"With Good Samaritan donation, the donor is giving to a stranger. Most recently, Good Samaritan donors have begun initiating chains which are facilitating hundreds of additional living donor transplants at much higher compatibility levels. Chains are a way for one Good Samaritan donor to help many patients get transplants instead of just one person. Chains are a major breakthrough in transplantation and are revolutionizing the process by eliminating incompatibility as a barrier to donation and providing a way for all recipients to find very well matched donors.

Chains are initiated by a Good Samaritan donor and fundamentally change the math of paired exchanges, allowing for better donor-recipient matches, providing a way for poorly compatible donors and recipients to improve match compatibility. Chains have the potential to facilitate highly compatible transplants, in some cases six antigen matches, allowing the transplanted kidney to function longer in the recipient, creating fewer antibodies and allowing the recipient to potentially take lower doses of medications. To date the Registry has facilitated two six antigen match transplants (approximately 1% of transplants) utilizing chain matching. As the Registry pool size increases, the number of six antigen matches will increase), Many Good Samaritan donors choose to start donor chains because it is a way to help more than one person suffering from kidney failure. One chain typically facilitates 6 transplants but in some cased can facilitate over 20 transplants."

[Mnemosyne]

16. K&R for more visibility. nt

[cap]

17. kick

[JimDandy]

18. K n R

[REP]

21. Universal recipient?

Good luck to you!

I'm B- and currently CKD (knock wood). I have FSGS.

[cap]

23. Not universal recipient

But universal donor. Can only receive O donor directly. But can be part of chain if we find any donor and a computer system will match everyone up.