New to Site - Trying to donate to sister

[140jmr]

Hello eveyone.  I'm very happy that I found this site.  My sister currently has her 2nd transplanted kidney, but the doctors say it's not going to last so they want her to immediatley get put on the list.  Her issue is she doesn't have any where else left to receive diaylsis.  We both went to Einstein in Philly and she has been put on the list.  We have different blood types, as do my other sister and brother.  We are trying to go through the exchange process but I need to lose 30-40lbs first.  Now we are going to New York Presbyterian on Monday and they are going to do the cross match blood test even though we are different blood types.  Dr. Lloyd Ratner did her last transplant there using plasmapheris and thinks it may be an option again.  She's been through so much and she's only 33!  I've been nervous about the appointment because I know my weight is going to be an issue.  I have lost 10lbs in the last month and I'm still dieting, but I struggle with it when I feel the pressure of why I have to do it.  It's like the reason is so big, it has the opposite effect.  I don't know if anyone else understands what I mean but I would love to hear from anyone that struggled with their weight before donation.  My sister keeps asking if Einstein has started any of my tests and it breaks my heart each time to tell her no.
Thanks
Jackie

[dodger]

I don't understand that she doesn't have anywhere else to receive dialysis, please explain further.  If it is a stint issue, she could go with the periontial (sp) which can be done at home and is actually located within your body.  Many are able to continue very active lives and the dialysis takes place during the evening while they sleep.

[SWB]

Jackie,

I just wanted to tell you that I sympathize with your weight-related situation and the time senstive challenges you are facing.  I just got approved and have a surgery date as of last week.  However, I have a family history of high blood pressure and although I knew I would need to loose a little bit of weight, I ended up dropping over 50 lbs.  I was the last person in our family to get tested and the only person who made it past the the intial set of health questions/blood tests.  And, my receipent who is a family member that was raised as my brother had one kidney from a previous donation that is shutting down.  It was (and is) a lot of pressure.  It takes a lot of time and commitment.

The one item that I would stress for you is that it isn't just about the journey and struggle up front including dropping the weight.  In order to stay healthy after donation you have to be committed to keeping it off.  I have gone up and down on my weight previously and was committed to getting back into shape even before I was tested.  The donor panel members and interviews that I went through during my second round of tests really did a great job of stressing this topic with me and ensuring that I wasn't paying lip-service as well. 

I in no way want to discourage you from donating.  In fact, I told the patient advocate that I was willing to do whatever it took  And, in terms of the weight, I was already looking at getting into shape again.  They really do have my health as a priority and want to ensure that my decisions (though with good intentions) do not cause me personal health issues.

As I noted in a previous posting, I am not sure now who is getting the biggest benefit out of my donation scheduled for June 29th - me or my recipient.  I am so blessed, healthy, and changed for the better as a result of my journey.    I can only hope the same for you.  If I can help in any way please feel free to private message me.

Blessings & warm wishes to you and your sister as you continue with your journey.

-Scott

[140jmr]

Thank you Scott for the great words of encouragement.  As far as my sister (Jenny) not being able to receive dialysis it is because she has done so much already. She is currently 33yrs old but first lost her kidneys and went on home dialysis when she was 9yrs.  She was on it for about a yr then she received a kidney from a cadaver that lasted until she was 18.  From 18 until 26yrs old she was on dialysis.  First home dialysis, which worked for a while but due to infections she could no longer receive dialysis that way.  She then moved to the other dialysis where she went 3 or 4 times a week.  She first had a shunt, I think? in her arm.  That lasted a long time but then failed. They moved to the other arm, then her leg.  My sisters antibodies are very high and the doctors wanted her to receive a live kidney the second time around.  My Mom, who was tested when she was little, was no longer a good match due to Jenny's antibodies that built up over the years.  My Mom and sister went to New York Presbyterian and Dr. Lloyd Ratner used plasmapheris.  It did work, but the first 1yr she was in the hospital almost constantly.   She keeps getting infections because she has had to have stents in ever since she got the kidney.  She was getting them changed out every few months and now it is getting more frequent.  She has gone into rejection twice, the last time being in January where they told her the kidney won't last too much longer.  They said she is very lucky to have had it for 7yrs considering. 

I have to give so much credit to my sister because she just has been so strong through everything.  Half the time you don't even know when she isn't feeling well.  She just wants to live her life and does so pretty well considering.  When the doctors told her in January that she may lose the kidney soon it was very hard for her.  It was the first time in many years that I saw her upset and scared.  They told her they could try a experimental dialysis that goes through the liver.  They also said she had to get listed immediatley.  They said her best chances are a perfect match and a live donor.   

One of the worst parts of all of this are there are 5 of us siblings.  We have an older brother who has cererbal pasley and defintely could never be considered.  The remaining three of us have blood type B+ and my sister is A+.  We all have the same mother (O+) and father (AB+).    Also, my sister has been fighting us on even being tested for the exchange program.  She finally has allowed me to start and now finally last night my other sister is also going to start the process.  Jenny is already registered at Einstein hospital in Philly and now Monday the three of us have an appointment at New York.  They are going to do the cross match of our blood to see if plasmpheris could be used again.   It is just such a story. . . makes me sad to write it all

Well - we are doing everything we need to do and hopefully everything will work out.  I update next week and let everyone know how the appointment went.

Jackie

[SWB]

Seems we have similar stories to some degree.  Given the need for a perfect match being best have you investigated pair matching if your center offers it? 

I wish you all luck with the upcoming tests and keep us up to date on the process.  You will be in my thoughts and prayers.

[willow123]

I agree with the poster above who suggested getting her a better match through a paired exchange.  NYU has a paired exchange as does Columbia Presbyterian (and I think there are two CP locations--one up by 160th street and one downtown). I think Mt. Sinai might have a paired exchange list as well.  You do not have to choose just one hospital--you can get put on the lists everywhere if you fill out the paperwork.  Also, if there is someone else in your family who would be interested in donating, you can add them as well to increase the chances of an exchange.

If your sister has had a number of transplants she might have a high antibody count that makes it difficult to find a match.  That is the situation with my sister in law.  I suggest you get her on as many paired lists as you can.  Plasmapheresis is a last resort as she was told there are a number of negative health consequences -- so definitely ask about that.

Best wishes to you and your sister!