Living Donation Discussion and News > Living Donation Forum

Ups and Downs.

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Aries7:
Sarah,

It could be that in addition to your sister not feeling well, she may feel like she does not have much conrtol over things in her own life right now. She also may be struggling with having to make you got through surgery to give her a kidney.
This no doubt is a very stressful time for the both of you. Try to hang in there. It sounds to me like you are doing a fantastic job of dealing with all of this. It is important for you to have people to talk to also. Please feel free to some here to "rant" as much as you need to. We are here for you!

I am sending hugs your way!!

Linda

Mmeaimee:
Finally pleased to have found others that have "reality" muck up the warm fuzzy altruistic feelings.  I can appreciate the way you are feeling right now.  I am considering becoming a liver donor for my mother.  Although the risks to the donor have been explained to her several times, I find it unsettling to hear her consistently tell others that its a realitively simple & low risk surgery for the donor.  Every time she says something like that I can't help feeling like I'm about to be stripped for parts & I feel terribly selfish & guilty that I have those feelings.  I think that it may serve as her coping mechanism...a denial of sorts...to not have to deal with her problems plus the risk that the donation would place on me.

I also have experienced a whole variety of 'wierd' 'ackward' & unexpected reactions as we work through this process.  I feel that I have to be careful about asking questions to the doctor in front of my mother about the donor part of the transplant (in hidesight I should have saved my asking to the doctors in private...but since organ donation isn't exaclty a daily routine for me...).  My questions to the doctor only served to make her angry...as if to imply 'if you don't do this with no questions asked then you don't care about me' & I am feeling even more pressure & guilt to donate.  I feel that this is a very real aspect that no one talks about.  She is despirate to live & this option has been presented to her by the doctors, so on her end she is holding her breath that the donor is a sure thing because natuarlly any hint of the donor waivering spells disaster for her as the doctors have clearly reiterated at each appt.  So, the one person that I used to tell everything to has become a person that I cannot discuss this lifechanging event as it places far too much stress & termoil on her.

 

Mmeaimee:
I can appreciate the need to express yourself outside of family and friends.  As I mentioned before, I have received many reactions from family & friends that I didn't anticipate.  When my family & friends heard that I was considering donating an organ to my mother they were very negative.  So now I am caught between my loving & despirately ill mother, the all to 'real' statistics, the 'save a life, donate an organ today' medical ctr, and the negative nellies.  I hope you will keep us posted on how things work out for you & your family...maybe we can learn from others experiences on how to navigate these issues!  My thoughts go out to you & your sister.

sherri:
Mmeaimee,

All the points that you put forward are very important and very valid! I am sorry to hear that your Mom is sick and in need of a liver transplant. Deciding to become an organ donor is a big decision especially a liver donor which carries a much greater risk of death or complications than kidney donation. I don't think the hospitals truly understand the pressure family members feel when they explain the option of living donation to their patients. The assumption is that family is an unending supply of spare parts and you can just ask your family for a kidney because "you only need one anyway so the other is a spare" or ask for a piece of your liver "because the liver regenerates". They really need to reevaluate their patient education.

I think you might be able to get some help from the living donor advocate, social worker or psychologist at the center or find one on your own through your own insurance. Making a decision like this is very difficult and as you say there really is little place for family members to vent. If at any point you feel that this is not the right time or right decision for you, you can decline and the medical team will just let your family know that something came up which disqualified you from being a donor. in this way you can decline gracefully and truthfully. A donor needs to be both medically and psychologically fit to donate. This is not for everyone.

Each relationship also brings different emotions.  I think in the parent to child donation it seems very natural for a parent to want to do anything to save their child. However, with child to parent and especially to an older parent (and that is subjective) that reciprocity is not equal. It seems natural for parent not to want to sacrifice their child or harm their child in any way. But I think you are right. Defense mechanisms take over because ultimately the survival instinct comes out and we do anything to live.

I hope you get a chance to think things through, talk with someone you can trust and decide on your own. Liver donation is serious. I am sure you read about the Ryan brothers and the donor brother who died after donating a lobe of his liver to his brother. The statistics are out there for you and your Mom to see. Make sure you know about your hospital's program and statistics of living liver donor complications and deaths as well as the national statistics.  Maybe having a meeting with the social worker as well as the physician can help make your Mom aware of the seriousness of this surgery.

Wish you the best as you contemplate this and come to terms with whatever decision you make.

All the best,

Sherri

Mmeaimee:
Thanks Sherri!  Your posts & suggestions are very helpful.  In addition to the Social wker & Donor Advocate I am hoping to speak with others out there who have been a liver donor.  I am a clinical research coordinator & am very familiar with informed consents & regulations governing vunerable populations...so i was taken aback to discover myself on the other side of this equation.  The Informed Consent process is intended to ensure that the pt. is making an independent informed decision without undue coercion...but i am left with the startling realization that in terms of living organ donation to a loved one, one can never be free of at least implied coercion from both the doctors & the receipiant.  Now I don't mean that ones family is treating them badly & saying do this or else...i mean it in the emotional sense as many potential donors feel if i don't do this then i am left to watch my loved one die with the knowledge that i could've helped them.  Now this might not be the healthiest logic but it is very real.  The doctors further reinforce this fact as pt's are told, this is your only hope.  This is one Informed Consent decision that is often made on emotion alone.  In fact, one research study that interviewed donors post transplant found that it was common for many donors to purposely avoid seeking factual data after a certain point as to not have a negative impact on their decision to donate.  Not sure what my decision will be some days its yes! i love my mother, some heck no, others oh my god how in the world did we end up here, and gosh wouldn't it be great if everything wked out....guess i'm in for a wild ride. 

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