Seeking advice: just starting the evaluation process as a potential liver donor

[Kelly_Mc]

I am beginning the process to evaluate if I am a match for a dear friend's brother. The two days of evaluation are schedule for early May.

What questions are helpful to ask the surgeon? What questions are helpful in general? What can I expect in terms of support for after-care in regards to nutritional support?

My transplant center is Columbia Presbyterian, if you have experience with this transplant center, I'd especially love to hear from you!

Any information is greatly appreciated! Thank you!!

[elephant]

Dear Kelly,

I was a kidney donor to my Dad at CP in May 2011.   Daddy had his heart transplant there 1999, so we returned for the kidney transplant.  He's had excellent care the whole time.

Parking is very expensive, but donors can get vouchers to cover the cost.  You have to ask at the transplant clinic when you register. 

It is a big place and the hodgepodge of connected buildings can be confusing.  I found that the most helpful people were janitors and deliverymen. 

The only negative thing I can say about the experience is that post-surgery there was little follow-up.  After my two-week follow-up I was discouraged from going back at 6 months. When I called them after a year to ask questions I was really disappointed in the lack of interest.

PM if you want to have a longer discussion.

love, elephant

[Oldnslow]

No experience with CP.   my transplant was at Clarion in Indianapolis.    I went through the eval process twice as my brother's insurance changed after the first eval and Clarion wanted us to repeat it.   I would have thought it would be the same process but Clarion actually conducted more tests and I though they were more thorough than the original (Henry Ford) in Mich.   The transplant team treated me more like part of the process and less like the holder of a spare kidney.   So, it can differ between teams.

Nutrition advice was just basic common sense things, especially after the surgery:  avoid things that cause gas, eat prunes, drink lots of liquids.    Also, avoid some types pf painkillers like ibuprofen and aspirin.    Bring a pillow to the hospital to hold over the incision on the way home, don't drive for three weeks, don't lift more than a gallon of milk for six weeks....

Follow up was ok with tests every so many months for the first two years to measure my creatin.   Have not heard anything for the last two. 

Hope that helps.

Good luck - very generous thing that you are doing.

[sherri]

Most of us on this board are kidney donors which is quite different than living liver donation. Reading all the information about liver donation, the risks, what to expect etc on the information section of this board will help. There are a few living liver donor stories in the experience section as well. I'm sure you have read the recent stories in the news about living liver donations. If not, just google and you can see them. The surgery is risky for donors as it is much more extensive than kidney.  Ask the hospital and their surgeon for their surgical statistics, what types of adverse outcomes they have had including death, talk about recuperation time, what they will do for you in the event of a complication, your future health risks etc. Try and speak with donors who have had both positive and negative experiences to get a well rounded picture. There is a section on here with a list of questions to ask the surgeon during your interview process. Remember you are learning as much about this elective surgery as much as they are interviewing you to see if you are healthy enough both physically and psychologically to donate.

Keep us posted and good luck through the process.

Sherri

[peterduvall]

Hi Kelly

Peter here - I donated a kidney to my father at Columbia Presbyterian 5 years ago.

I had a very good experience - evaluation process is a little tough - on purpose. CP is a VERY big program and I felt like they could have had more donor coordinators.

Good suggestion to write down questions as you may have many. Another suggestion - educating yourself about the process pre & post surgery is always good, but I think excessive internet researching can also lead some people to a  stressful place as well.

Most importantly - the Dr.s were really amazing. my guy, Dr. Lloyd Ratner.......was in on one the world's 1st laparoscopic nephrectomy, and my father's guy was Dr. Ben Samstein - both excellent, both very good with people.

Follow up wise - I'm trying to remember........a week or 2 post surgery, , 6 months, and 1 year.

good luck!!!!

PS - physically I feel better 5 years post surgery than I did pre-surgery - it made me want to be a healthier man.

Peter