Ups and Downs.

[Prelude_Sarah]

Today marked two weeks from the day I'll be donating my left kidney to my sister, on May 4th at University hospital in Denver Colorado.  I thought I would have a harder time today, but it turned out to be a great day of personal revelations and a lot of success trying to feel really positive and excited about this experience, instead of afraid and unsure.

I don't know quite how to express this, but I really need to.  My productive day had a little dent in it when I went to visit with my sister for a little while.  I love my sister so much, that's why I'm doing this.  And I understand that she's very sick and is not really acting like herself right now...but she sometimes hurts my feelings by saying things that seem insensitive to me (in regards to the operation, or health issues in general).  I might mention my thoughts or concerns about the surgery or hospital stay for example, and she often has to "correct" me and set me straight about hospitals because apparently I know nothing of the matter.  And it also feels like she tries to down play the donor side of things...I don't know why she would feel any need to do that :( We almost got into an argument tonight over something so stupid.  I just bit my tongue and let her say her piece.  But my feelings are pretty hurt.  I wish that we could feel closer before this operation. 
To be honest, she's acted strange towards me ever since the testing process began.  Has anyone else ever dealt with this kind of awkwardness with their recipient?  I don't know...I'm going to decide to let go of all of those bad feelings and focus on bringing back in the positivity that I felt earlier today...but I do wish things were a little different right now. 

So, nothing urgent to report...but I've come to identify with this forum as a place where I can express myself completely.  As much as my family tries to be there for me, I really can't always be totally honest with them.  So thank you guys, again, for listening to my rants :)

[Prelude_Sarah]

And might I add, that I feel awfully selfish complaining about my sister who is so sick...just really need to voice that here, since I can't anywhere else.

[PhilHoover]

I'm breathing a prayer for you...I really am...

I am thinking SO many things right now......but know that YOU are being very unselfish and generous.

Much love to you in the days ahead.

Phil Hoover
Chicago

[sherri]

Sarah,

Your post brings back so many memories and similar thoughts. I was one of those "reluctant donors" (probably still am). I didn't have those thoughts of "I can't wait to do this", "wow I'm saving my sibling's life" or any thoughts along those lines. Mine mostly were, I must be crazy, I can't believe I am having elective surgery, something horrible will definitely happen to me especially because I don't have those other feelings like a "good donor" should. I sense you may feel some of the sibling guilt I felt (and still feel but it does lessen over time). I certainly wished that my brother and my parents would have said to me, if you don't want to do this its okay you don't have to. This is a really big deal and we know we are asking a lot. It never happened. But it should be in the handbook for family recipients so that family donors don't feel coerced into donation. But will also never happen.

One of the many things I learned about the donation experience is that recipients are desperately seeking a kidney. It is sort of drummed into their head that living donation is the best way to go, deceased donation only a second best, call your family and ask them for a kidney, heck they have two and "only need one", the surgery is minimally invasive, no big deal. I often remind surgeons that when they quote statistics to their patients, it may be 1% or 5% for a complication or death, but when it happens to you it is 100%. So we as donors are nervous, scared, ambivalent and everything else. I may not have wanted the hero status, but I was so looking for compassion and empathy from my recipient. But I think it is too hard for some recipients to be able to give that during this time because they are so focused on getting that kidney they can't even allow any other thoughts to enter. We are so focused on the stresses of the surgery, family dynamics, "baggage", that we have a hard time looking trading places. After the surgery most people will ask how your sister is, they will just assume that you are fine, since you are the healthy sibling, and will assume that the recipient surgery is much harder than the donor surgery. Non related donations will always get a few extra points on the "altruistic scale" than family donations because it makes sense that a "stranger" shouldn't want to do this, but family is expected. I felt very angry that my my brother felt entitled to my kidney and there was an assumption on his part that me my husband and my adult children were just going to be willing to do this without any hesitation just because some doctor told him it was perfectly fine.

Personally I believe that family donation is often harder than non related because you are in a sense "obligated". Yes, there is the medical out to decline, but at the end of the day, we all go home with our relatives and the doctors just file your report in the drawer. Of course you love your sister and that is why you are doing this so as to make her life better, but when it comes down to it,there is a sense of guilt, duty and obligation when it comes to family relationships. There is this concept that I fully understand now, "greater is the one who is obligated than the one who is not obligated". One would have thought that the person who is not obligated in a commandment and does it reaps a greater reward than the one who is obligated. But in reality the conflict is often greater for those who are obligated and step up to the plate, because the one who isn't obligated can always decline or never step up.

I am still coming to terms with being an ambivalent donor. It is three years later. I have worked with a social worker to try and adjust my expectations, work on myself and learn not to be so hard on myself. I still have a ways to go. It has taken some time to forgive myself for not being one of the more gracious donors but I realize now there are many more of us out there and that is ok too. The best gift you can give yourself is to be good to yourself. Try not to have unrealistic expectations. People will most likely act within character. Kidney transplants improve one's kidney function, they are not character makeovers. Look into seeing a social worker or psychologist if you feel like you want some clarity and a safe place to talk. Your insurance may cover mental health services for a reasonable fee. Mine does and it has certainly helped me. I feel happier now three years later and am also working on using my experience to help others. I may not change the entire transplant system but I hope I can help some other families cope with renal disease and the difficult issues surrounding transplant medicine.

Sorry to ramble but your situation really resonates with me. I will be thinking of you on your surgery date and praying for you and your family.

All the best,

Sherri

[Michael]

I agree with Sherri's comments. I would add that future recipients are going through a great deal that can affect their frames of mind and their behavior towards the donor. In my experience, I didn't have an understanding of the guilt my sister felt at asking me to undergo surgery on her behalf. She didn't mention it to me until literally a decade later!

So, perhaps your sister is dealing with a high level of emotion and stress, too, and you see it manifested in her behavior. That doesn't invalidate your feelings, but perhaps you could have an open discussion about what you're BOTH feeling right now in the interest of clearing the air and entering the surgical theater with clear consciences and open hearts.

[ohtobeahayes]

Sending you so much love. Let us help get you through, and thank you for not keeping it in. Sherri, I love you, too. You are invaluable!

[Fr Pat]

     Just to add a thought: some people are able easily to accept help graciously. But some people find it very hard to accept help, because it makes them feed dependent, needy, "obligated" to be grateful, and angry about the fact that they need help at all. So there can be some resentment toward the person giving the help. Add to this the effects of the illness itself, the effects of medication, and the fears involved in upcoming surgery. I am sorry you are having this problem, and hope & pray that all goes well.
   fr. Pat

[snoopy62]

Dear Sarah,
     After reading the comments in this thread, as well as in older threads, and having read Donor Girl and Reluctant Donor with fascination, I am convinced that my experience, as an unrelated donor candidate, is infinitely simpler than it is for related donors.  Not only do I not have to deal with a seriously ill loved one, but I had the luxury of being a "walk-on" who could arrive at his decision gradually, with no guns pointed at his head.  No baggage, no expectations, etc.  Overall, a much less emotional, fraught process. 
    I will say that, having met my charming intended recipient (when we were tested to see if our blood played nicely together), I do feel some sort of added "responsibility" for succeeding in the medical tests and other hoops still remaining in the process.  I think that process can be longer for non-related donors. As one doctor told me, "If you were donating to your wife or child, OK.  For them, one takes risks.  But since you're not a relative, I have to protect you by ruling out your possible risks as carefully as I can".  The length and complexity of the process is, itself, something of a stressor, but I don't think it compares with family expectations and other dynamics in that regard!
   You therefore deserve only praise for doing what you're doing.  I'm jealous that you're already approved and so close to your surgery.  May it go well for both of you...and may it only strengthen family ties.
  Good luck,
  Snoopy

[shelley]

This thread is full of really good stuff.  The honesty of Sarah and Sherri is really great.  Sarah, I wonder if, there might be some complicated stuff going on with your sis, having to do with competition, that she's not aware of.  Like maybe your being a donor makes you the "good" sister, the altruistic giving one, which in her mind makes her the "bad" sister who always takes, takes, takes.  Does that make any sense?  Not that any of that is true, but it could be bothering her deep down and that's why she feels the need to downplay your donor role.

Snoopy turned on the light for me about something when he said  As one doctor told me, "If you were donating to your wife or child, OK.  For them, one takes risks.  But since you're not a relative, I have to protect you by ruling out your possible risks as carefully as I can".   I have been wondering why the testing process is taking SO DARN LONG (over a year now) and why they keep re-testing and seem overly meticulous.  You gave me a possible explanation:  because I'm not related to my recipient, we're just good friends and live very far apart.  They never seem sure of me or something, like maybe I'm doing this for some ulterior motive.  at least it feels that way to me.

[Prelude_Sarah]

Sherri, thank you so much for sharing your experience with me.  I've lived with the idea of giving my sister my kidney for 16 years now - but you're right, once it's right in front of you, it's very different. 
I'm so sorry that you also had to go through this kind of pressure and stress.  The rest of my family tries really hard to make me feel like I don't "have to" do this, but I don't know how anyone would have felt if I actually would have said no.
When I hear you say that you still struggle with the guilt of having been a reluctant donor, I just want to give you the biggest hug in the world.  I'm a hypocrite to say this as I've beaten myself up too, but you did it!  You put your life on the line for someone you love.  I hope you can let go of any guilt, you are a beautiful person.
Shelley, you may be onto something there.  That has been a dynamic that we've struggled with a little since we were younger. 

It really makes me feel so awful to think of her feeling guilty about this.  We were inseparable as kids.  My big brother, sister and I were all home schooled.  I didn't attend public school until I was in high school.  My sister and I were best friends forever, and I just hope we can find that again some day soon.  I will try to let go of things that feel hurtful now.

Much love, everyone.

[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.