Getting started

[Jjump]

Hello, my name is Lisa.  I'm looking to do an unrelated kidney donation. I have not yet called my local donation centers due to timing right now. But I read a couple of posts which have brought up some questions.

First i read a lot of things about JH. Is there a way to research my local centers?  I'm in NM and there are two: Presbyterian and UNM Hospital. Presbyterian states they do the laproscopic surgery, so I was going to start there. I can't really afford to travel elsewhere. Should I be doing more research on my hospital?

Also, just wondering on how long the process takes. I assume I can get the initial appointment pretty quick and I'm hoping I can donate soon since I'm o-.  I can't actually do surgery until mid-march. Would now be a good time to get the testing started?

Thanks in advance!  I signed up for a living donor buddy and hope to have one soon.

[Fr Pat]

     www.ustransplant.org is one site that may provide statistics on transplants at individual hospitals.
     www.floodsisters.org has data on which hospitals will accept and test a "non-directed" donor, as many hospitals still will not test a potential donor unless she/he is donating to a particular patient.
     As far as testing is concerned, the earlier the better. You can't even think of dates or plans until you have at least passed the initial tests/interviews to see if you a good candidate for donation. For example, a small percentage of people are born with only one kidney, but never notice unless a scan or x-ray is taken. Starting the testing may also give you more access to information that will be helpful in making your decision.
   best wishes,
    fr. Pat

[lawphi]

All your donation Travel expenses can be paid by your recipient. Also, there is a federal grant available that will cover food, travel and hotel expenses for you and two caregivers. You can afford to be picky about where you donate.

As to research, UNOs has data plans regarding each center, the type of kidney donation and numbers.  I recommend having this procedure done at a facility that does this on a weekly basis.

You have the luxury to decide the time frame you can donate. 

[Jjump]

Well I thank you both very much. The thought never crossed my mind that our transplant centers don't do non-directed transplants. So I called and sure enough, they do not. So guess I'm going to need to travel.

Any thought on TX or AZ or CO having good transplant centers?  And how do I go about getting two caregivers expenses paid for or is that process done as part of the donation process?

[jstx]

I traveled to Johns Hopkins (from TX) to donate and really liked them.  They do take non-directed donors, I believe.  I think that Baylor University Medical Center in Dallas will also take non-directed donors.  However, I don't know how well either of these hospitals rank compared to others in the nation.

How wonderful that you're even considering giving such a great gift!

[Jjump]

I contacted the Alliance for Paird Donation. They take altruistic donations in hopes to start a chain reaction of paired donations. I have some forms to get me started and will make my appointment for my physical soon.

Thanks for all your help!

[MissFrizz]

You can apply for financial aid through this organization to help pay for hotel, food, and gas for the initial appointment, surgery, and follow up.  You will give the form to the social worker at the transplant center. 

http://www.livingdonorassistance.org/

Good luck.  Keep us posted.

[Jjump]

I've read that and it confuses me.  Does it mean that coverage for travel can only happen if one or both are in financial hardship?  My combined family income is decent enough but we too have bills. I can't just whip out $$ for hotel and travel and possible airfare.  And I thought I read somewhere there was a grant or something to help pay for two caregivers to travel as well.

[Fr Pat]

Dear "Jjump",
     The "Floodsisters" site mentioned above notes these hospitals as accepting "altruistic" (that is, not directed to a friend or family member) kidney donations:
ARIZONA:
--- "UMC", Tuscon
--- Mayo Clinic, Scottsdale
--- Mayo Clinic, Phoenix

TEXAS:
--- Texas Baylor U., Dallas
--- Methodist Speciality, San Antonio

(their websites are listed at the "floodsisters" site)

     Keep in mind also that the techniquies for safely transporting a removed kidney for transplatation in another State have improved so much that now some (many?) transplant hospitals can fly your kidney elsewhere and still have it in excellent condition for implantation. So it is not always necessary to go to where the recipient is. You might be able to donate close-to-home and have the kidney flown acress-country to the recipient. Kidney donation has its risks, so there is a benefit of being CLOSE to the hospital where you donate, so that IF there are complications afterwards you are nearby to have them treated by the same hospital that knows you.
     The government program mentioned above does have financial elegibility requirements. Once you know where you plan to donate, the social worker at that hospital SHOULD know how to manage the paper-work. The "Transplant Recipients International Organization" ("T.R.I.O.") has a limited ability to help some living donors with transportation. www.TRIOWEB.org   .
     By the way (information for everybody) that same TRIO group collects unused frequent-flyer miles that some airlines let them use to get free tickets for donors. Anyone who has frequent flyer miles and wants to donate them can contact TRIO.
      best wishes,
   Fr. Pat

[Jjump]

That's a good idea about donating close to home if there are complications.  My local centers don't do very many though so I do worry about that. 300 or so a year, I read.

Thanks for the info.  I have so much more research to do, huh? 

[llinton98]

Lawphi made some very good points. If you decide to give this gift to someone it must be with as much information as possible, so as not to waste it or bring major negative impact to yourself, your family and your future.  The medical facility must be highly ranked for transplant. The surgeons must have lots of experience in this area. It makes them able to problem solve when "bad things" happen. They will have seen trouble before and know how to manage more successfully. If you are going to put your life at risk you must do it in a "best" place not a nice, convenient place.

Some of the best facilities include: Stanford in CA, Mount Sinai in Manhattan, The Mayo in Rochester WI, NY Presbyterian/Weill Cornell NYC, NY Presbyterian/Columbia NYC, and Johns Hopkins Baltimore MD.  All not for profit hospitals must alot some of their sevices for those with limited  financial ability.  First job is to contact a coordinator at a facility. They have done all these things before.  They will know how to problem solve issues that seem insurrmountable now.

Best of luck to you!