donating to my brother.

[felixdacat]

I am donating my kidney to my brother who has had type I diabetes.   I am a match and I am pretty healthy.   he lives in NJ and I live in GA, so I will need to travel up there. I have been relying on him to meet surgeons and coordinators and such at different centers.  We have narrowed it down to columbia in NY and St Barnabas in NJ.  has anyone had their surgery there?   Any advice towards which way to go?  I had searched the boards, but did not see anything .   If I am not allowed to ask this question, sorry.   I have dealt with hospitals before and post surgical care is important.   Quality nursing care is hard to find!   Also should I stay near the hospital post opt in a hotel, or at a relatives house?   I think I need to stay up north 7-10 days. 

I have been reading everything to know what to prepare post opp.  I have a desk job, so I assuming 4 weeks is enough for disability with all things normal.   I am a stomach sleeper , so BAHH to that.    .   Wonder how long before I can sleep on my stomach.   I am pre menupausal, so a bit concerned about that.   I am already on Cymbalta for other reasons (I have a teenage daughter. enuf said!), so wondering if that will help with the post donation blues.  I will ask my Dr about that.

[llinton98]

Hi,

I donated a kidney to my type I diabetic sister in 2010 at Columbia Presbyterian (168th Street). The following year my sister had a pancreas transplant at Columbia/Weill Cornell. I would love to speak with you about our very positive experiences with both facilities. email me at llinton98@yahoo.com

Laura

[elephant]

Dear felix,

I also donated at Columbia Presbyterian.  Almost exactly one year ago.  I have only positive things to say about my experience at CP, and will be glad to answer any questions or to speak to you if you wish.  You can PM me.  Sounds like we are close in age. 

Bear in mind it is an enormous medical facility.  Along with the benefits of its breadth and depth of resources comes the downside of large scale...you need to learn to navigate around, ask questions of everyone, and in general be your own advocate. 

I live about an hour from the hospital.  The first time I returned was about 2-weeks post op for a checkup.  You may want to plan to stay locally until you have a follow up visit with your team.  But I don't think locally means you have to stay in the city. 

I was back at my desk job after 3 1/2 weeks.  Everyone recovers at their own rate. 

Love, elephant

[sherri]

I also donated to my brother who lives in NY but he decided to come to Baltimore where I live and have his surgery at Johns Hopkins. He actually was the one who initiated it because he has a connection to one of their financial supporters and got VIP treatment. It turned out better for me because I was closer to home. It actually worked out best for both of us. He did all his testing in NY and came to Hopkins for his one day testing the same day I did all my testing (surgeon, CT, nephrologist, psychologist etc). He came on Sunday evening the night before our surgery. I stayed as an inpatient for 4 days and he stayed for about 10 days till they got his medications, blood pressure and bowels stable. He learned how to take care of his antirejection meds etc. Once he was discharged he stayed in a friend's apartment, which made it easier for both of us to recuperate in our own space and have family and friends come to visit. After two weeks he went home. Insurance wasn't a problem. Hopkins referred him to a nephrologist at Columbia who has followed up with him since (4 1/2 years) and they send his results to Hopkins so they can enter into their system. So donors don't always need to do the travelling. Something to think about.

I was happy to be close to the hospital in the event of a complication. Donors sometimes have a harder time getting treatment outside their hospital but recipients are constantly going to be followed by their nephrologist with whom they have developed a relationship with.

Good luck

Sherri

[jennybebopper]

Great questions!

I was able to lay temporarily on my stomach within a week or so, was sleepin on my stomach probably within four weeks.  I think this varies a lot depending on the person.  Staying near the hospital that first week is not a bad idea at all.  It's nice piece of mind to know you can go back to the team that knows you rather than starting over with an outside provider should you have post-op concerns.

[Fr Pat]

     Definitely stay near the hospital for a few days after discharge. SOME donors do have serious complications, and it would be very good to be able to go right back to the same hospital and the same surgeons if that happens.
     Also, while SOME donors (as well as some patients following any surgey, or childbirth) do suffer post-donation "blues" most do not (as far as I know). So be aware of the possibility but don't presume it will happen in your case.
              Fr. Pat

[felixdacat]

an update.

I am coming up to columbia at the end of next week to do my Cat scan and meet the team.  I got lucky and did not have to do the GFR test. that did not sound like a whole lot of fun.  I did have to redo my cross match and they made me do the glucose tolerance test.   I am up to vile 27 of blood in this process.  (figured I would count).     I read this board on a regular basis to keep myself informed.  I am staying in the area for a week to have my post op visit. My DH is going to take family leave to be up there with me.   Not sure where I will stay yet after the surgery, my brother's house, a rehab type place, a hotel, etc.
I am pretty open about doing this. I work in a close knit group that has been together for a long time , and with all the time off for testing, I needed to forthwright.   In general I tell friends as well.   The funny thing is that as much as it is a big deal, and so many people tell me what a great thing I am doing, I dont feel like I am doing beyond what anyone else would do for a family member. The surgery doesnt sound like a fun time, but it seems that now a days its not that bad.  I have had other surgery before (gallbladder and some cosmetic), so I sorta know what to expect, plus my DH had open heart surgery 8 years ago.     

[elephant]

Dear felix,

Be sure to update us about your experience.

Dr. Rodrigo Sandoval did my surgery.  My Dad's surgeon was Dr. LLoyd Ratner.  I believe Dr. Ratner developed the specific laparascopic procedure Dr. Sandoval performed on me.  My nephrologist was Dr. Geoffrey Dube. 

Donors can get free parking vouchers, you need to ask for one when you register on arrival at the transplant center.

I kept getting lost (CP is huge) and found that the best help came from the maintenance staff (and one UPS delivery man) since they know their way around the buildings.

love, elephant

[CK]

I feel the same way...I like to think anyone would donate a kidney for someone they love, but that must not be true, or there would be no waiting list!

Two of the doctors involved in my care said they do not think they would donate themselves. I don't get that. To me, it was just the right thing to do, and it made MY life better as well as the recipients.

[felixdacat]

Elephant,

my Doctors will be the same as yours.   After the 1st day I figured my way around CPH.  The cat scan showed that everything is good, except that the kidney I am donating has one very tiny stone in it.   They are going to have me do urine tests to see if there are foods I should avoid to with not gettnig any future stones.   This has nothing to do with my ability to donate.  The only members of the team that I met that I was not impressed with was the social worker and the psychiatrist.    I did like the rest of the team, the surgeon was great.  He is going to reuse my gallbladder scars where he can. 

Surgery is tentatively set for the 10th of july.   

[peterduvall]

Felix

Hi, Peter here, I live in NYC and donated to my Dad at Columbia Presbyterian 5 years ago. I had a very good experience, I live nearby, a short subway ride to 168th st,  easy decision, match, and surgery went well, I was in thursday, home sunday.

My Dr. was Lloyd Ratner (he's awesome and a laparoscopic pioneer), my Dad's surgeon was Ben Samstein......made my wonderful , yet somewhat difficult Dad at ease and that is an easier feat than the transplant I assure you.

I think the pre op, particularly psych stuff is tough on purpose (I felt the same way), especially w/ the psychologist.

Good luck - PS - there a good coffee shop bakery across the st on 168th st

Peter

[felixdacat]

Well my brother got the call for a 25 yo cadaver kidney last night, and there was some question about his heart (he has some issues he was working before I was donating to him), but in the end , as we speak, he is getting a kidney.  If for some reason that one fails, he always has me.

keeping fingers crossed.

[sherri]

Wishing you and your brother all the best. It is a wonderful gift for a family to agree to donate their loved one's organs so others may benefit. May they be comforted knowing that your brother's quality of life will be so much improved. How generous and thoughtful of your brother to be willing to accept a deceased donation. I hope his new kidney will give him many healthy years. How long was he on the waiting list?

Best of health to all.

Sherri

[elephant]

Dear felix,

I hope your dear brother has had a successful surgery and is recovering well.  Let us know.

love, elephant

[felixdacat]

its been two weeks and he is doing great.  He is driving again and working a couple of hours a day. His numbers look very good.   What a blessing this has been.