potential out of country donor

[meiling]

I am new to LDO, considering being a kidney donor to my cousin.  I meet the initial requirements of having same blood type and being in generally good health, so I didn't hesitate to offer.

My concern is he lives in the West Indies and I live in New York, which kinda makes things a little complicated but not impossible.  My cousin is currently at Stage V renal disease.  Although asymptomatic, his doctor has requested that all potential donors start screening right away so when the time comes, they can move right away.  I'm not sure how to start the screening process.  I know I would need blood work, EKG, ultrasound, etc.  From what I've been reading, out of state donors receive a kit and have been in touch with the transplant coordinator/team.  In my case, though, since I am out of the country, do I contact the transplant coordinator in the West Indies?  Can I just go to my PCP and get orders from her?  Some of the tests are routine, so my insurance should be able to cover them.... or do I get my cousin's health insurance info before I start screening?

If I pass all the tests and am approved to donate, I will have to fly to the West Indies for the surgery. 
My other concerns are:
- how long will I have to remain in the W.I.?
- when can I travel back to NY post-op?
- will my health insurance cover post-op visits here?

Also, other concerns are long term effects:
- will donation affect my life expectancy?
- what are dietary restrictions?

Other than reading the posts here on LDO, which have been very helpful, I have spoken to only one person who was a donor to his uncle.  He does not recommend donating.  He said it takes 10 years off your life.  He has had stomach/intestinal/bowel problems since he donated 8 years ago (prior to that, he had no such problems).  He said he cannot eat fried foods, spicy foods, fatty foods, high fiber, gassy foods (ie. broccoli, cabbage).  From what I have been researching, I have found no information to support this.  I'm thinking he might be an extreme case.

any feedback will be appreciated.

[sherri]

I imagine traveling out of the country to donate is a kidney must be daunting. It is hard enough to think of having an elective surgery let alone far away from home in another country. Would your cousin be able to travel to the US and have a kidney transplant closer to where you live rather than have you travel? His or her insurance may cover a foreign transplant if the donor is outside the country. Not sure but doesn't hurt to investigate that. And seeing that your cousin is just in the planning stages it appears that there is time to research safe short and long term options for both donor and recipient.

Questions you would want to consider is how proficient are the surgeons in the West Indies at doing laparascopic donor nephrectomies, how many have been done, what are the complication rates etc. Same questions you would research if you were having any type of surgery. While the surgery is considered generally safe, some donors do have complications post surgery from minor to major short or long term so you would have to consider what to do and plan for that. You can contact your insurance to see if there is any difference in your coverage if you choose to have surgery outside the US. Lots to think about but fortunately you have the time to investigate and get input from professionals. You may want to contact a nephrologist in NY to get an unbiased opinion about becoming a living kidney donor and also maybe they could help you research medical practice in a the West Indies.

Good luck on your journey and keep us posted on what you find.


Sherri

[Fr Pat]

Dear "meiling",
     I think you really have to set up direct communication with the Transplant Coordinator or doctor in the West Indies. Even in the U.S. there is variation from one transplant hospital to another concerning which tests are required and when. You should be able to get most of the testing done in the U.S. but there will have to be clear plans of how to communicate the results.
    You will have to be very careful to clarify insurance matters: for the testing, for the surgery/recovery, and for treatment of any complications afterwards, even months afterwards (some donors-- apparently a small minority-- do suffer serious complications).
     You will have no dietary restrictions after donating, but are of course urged to have  healthful nutrition and exercise habits afterwards to help protect the health of the remaining kidney. I do not know of any changes in life expectancy after donation. It has been said that "kidney donors live longer" and that is probably true as compared to the general population. But that may be because in order to be approved to donate one has to be tested regarding blood pressure, heart problems, cancer, etc. etc. so that means that kidney donors are healthier than the general population to start with.
     Note: I donated by the large open-cut method 11 years ago. It is more common in the U.S. now to do the surgery laporoscopically through remote instruments and T.V. monitors. However the rate of complications after laporoscopic surgery is slightly higher than after open-cut surgery, so if they do the surgery by the open-cut method it would not be more dangerous for you, although the recovery might be more painful.
     I hope that some of this info helps. Keep on getting well informed.
        best wishes,
           Fr. Pat

[Susie]

Dear Meiling -

Another consideration that you might want to research is your eligibility for transplant in US should you progress to ESRD at some point post donation.  Although that might not be an immediate consideration, it may become one at some point in your future.

Wishing you the best as you gather facts and make the best decision for you - please be sure to consider the impact this will have on your health and finances now and in the future.  The financial burden for your care will be 100% on you.

Susie