Should I Stay or Should I Go?

[Jewels]

Hello!  This is my first time posting, so first a huge thank you for allowing me to read all the helpful posts for the last couple months!  I have passed the first phase of testing to donate to my sister (adopted) that lives 2000+ miles away from me. My local PCP has been faxing results to my sisters transplant center.  Things definitely seem to be dragging out a little because of the distance.  I am moving into the next phase for CT, psych eval, social worker, surgeon meeting and I would really appreciate some feedback from anyone who has done this at a local transplant center versus traveling long distance to go through this at the recipients transplant center.  There would be substantial cost involved as I would need bring my 2 kids with me for the trip (airfare x3.) I am willing to do this if the benefits are there.

The testing piece does not concern me, but meeting the transplant team and their ability to answer my specific questions about the surgery, insurance, after care, etc does.  Is this the time that these types of questions are normally addressed?  I have thought of requesting a conference call with the team.  For my comfort I would like to have some kind of relationship with the transplant team prior to arriving for final tests and surgery.

Thank you for your feedback - from those who were donors long distance and local!
-j

[audrey12]

Hi, welcome and congratulations for making the decision to donate.

I live in the San Francisco Bay Area and donated in Chicago.  I too did my testing at home, but the transplant center required me to have the CT scan in their facility.  They also wanted me to meet the surgeon.  So I flew out for three days, had the CT and a consultation with the surgeon.  Before that I spoke to the coordinator many times on the phone, and had the social worker evaluation over the phone also.  I definitely asked all the questions of the surgeon when I met him.  The surgery was scheduled for six weeks later.  However, my recipient became too ill and it was postponed several months.  By that time, my surgeon had left the program and there was a new one.  I met him two days prior to the procedure and asked him even more questions.  I was fortunate.  Both surgeons were very passionate and eager to explain everything.

For the actual procedure, my husband and stayed in a local hotel for the week of the surgery but I recovered for an additional 10 days at the home of a relative.  The hotel was near the transplant center and had special rates for hospital patients and their families.  I had to do some calling around and also had to ask people to honestly tell me about the neighborhoods where the hotels were located before I chose one.  Oh yes, the airline also credited me enough miles to bump me up to first class flying home, since I had to be able to stretch my legs and get up.  I registered for the Frequent Flyer program and called them directly about it, and they made the arrangements.  It was American Airlines.

The airfare for you and a companion, and any travel expenses related to the transplant, are all tax-deductible as medical expenses.  If you have access to a Flexible Spending Account through an employer plan, the expenses are eligible for pre-tax withholding.  But if you're doing it this year, it's too late to arrange for that, so keep track for 2011 income taxes.

Your medical expenses should all be paid by your recipient's insurance.  You should not have any medical expenses due to the transplant.

I hope this helps.  I did not have small children so I cannot give you any insight there.  But there are many on here who will chime in with their experiences in that respect.

Best wishes!

[Christine Robinson]

Hello.

I also donated at a distance, so to speak.  I'm in upstate NY, and my recipient was 400+ miles south.  I received an enormous amount of financial support from National Living Donor Assistance Center.  They covered my travel, hotel costs for myself and a companion for the duration of my stay, meals, and day-to-day expenses. They would have covered those same expenses for the evaluation and follow-up, but I did both of those things here.

http://www.livingdonorassistance.org/

Angel Flight was willing to provide me with private transport to and from.

Colleagues at work arranged a fundraiser to cover my time off work.

I was very lucky in the support I received, but was also surprised how much was available without the fundraising and other efforts by friends and family.  The folks at National Living Donor Assistance Center were outstanding.  Please give them a try.

Good luck to you and your sister.

Christine

[Jewels]

Thank you for your comments...very helpful!!

Christine - My understanding is that to qualify for the Living Donor Assistance you need to be at certain income levels.  Do you know if there are other ways to qualify?

The good news is my Dad lives near the recipient and the transplant center so I wouldn't need to pay for any hotels.

Thanks again for your feedback.

Julie

[sherri]

I donated to my brother who lives in NYC but was willing to come to Baltimore to Hopkins to have his transplant. He actually chose Hopkins and in hindsight I am glad that as the donor I was close to the transplant center. He was referred back to a nephrologist at Columbia who has followed him for the past 3 years. He comes to Hopkins once a year just to check in with his nephrologist there. Both centers share medical records with each other. His insurance had no issues with paying for his transplant outside the state.

Since donors may have a harder time with follow up if there are complications, it may be an option for recipients and donors to consider if there is no problem traveling with insurance and the health of the recipient. People automatically assume that the donor has to travel but we see it can be done (paired exchange and chain donations) the other way especially if you have young children and a support system in your home town. As a surgical patient, you need to feel comfortable with your team of surgeons, physicians and support staff. So make sure you get your questions answered and feel confident with your care, just as you would with any other surgery, elective or not.

Good luck to you and your family.

Sherri

[Christine Robinson]

Christine - My understanding is that to qualify for the Living Donor Assistance you need to be at certain income levels.  Do you know if there are other ways to qualify? ...

The NLDAC website "for donors" section has information about income guidelines, which are pretty generous.  I'd make contact with them, in any case.  They may be able to give you some additional resource information.  And it doesn't hurt to ask.  They made the process relatively painless for me.  ("Painless" being a relative term, in this case.)

[Morgan]

I live north of Seattle and donated in Harrisburg, PA. I honestly think that the distance was bigger stress to the donor coordinator than for anyone else involved. I was lucky enough to have a lot of support in PA, being from there, myself. I went for the mandatory meetings with the nephrologist, coordinator, and social worker all in one day, and donated a few months later. I didn't meet my surgeon until I was checked into the hospital that morning, and I had to insist upon it. I had to stay near the transplant center for 2 weeks, and my transportation and room and board were paid by the National Living Donor Assistance Center. My recipient and I held a fund-raiser to cover other expenses and lost wages. Honestly, the worst part was the fact that I had a terrible time flying home with the weather, since the surgery was in January.

I would be happy to give you my email if you have more specific questions.
Morgan

[livingdonor101]

I would suggest having the surgery near your home as well. There is no medical reason for you to travel to donate a kidney. Organs are transported all the time.

However, there are good and legitimate reasons for a living donor to A. choose their transplant center, B. choose their surgeon, and C. be near their residence. A lot of this is covered here: http://www.livingdonor101.com/choosing_a_transplant_center.shtml (cuz I don't want to repeat myself)