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Author Topic: I feel so much pressure...  (Read 16412 times)

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Offline Aaron.3.Moore

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I feel so much pressure...
« on: March 18, 2013, 11:59:10 PM »
Hey everyone...

I've volunteered to donate half my liver to my dad. I'm cool with the idea, but one of my only requirements was that the surgeon uses a minimally invasive incision (like the upper midline incision).

I'm just not okay with the idea of the surgeon cutting through three layers of muscle when they could just go through my abs....
and also I'm young and about to get married, and I just hate the idea of having a massive scar for the rest of my life. My parents have managed to find a hospital that the insurance will cover 100% (which took awhile), and that has approved my father for surgery (which took a week long trip). Only after this process has their transplant staff been willing to talk to me (they don't seem to bother with donors until the recipients are approved) and lo and behold the surgeon there refuses to do anything but the traditional incisions (which are huge and very invasive). I'm just not okay with this.

I hate the idea of putting my parents through this process again, and I know they will protest, but I'm so freaked out by the idea of the invasive incisions. I feel very selfish for not being more agreeable. :/ Thanks for reading, just really felt the need to put this out there.

Offline Fr Pat

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Re: I feel so much pressure...
« Reply #1 on: March 19, 2013, 01:34:43 AM »
Dear Aaron,
     I am a kidney donor, so what I know about living liver donation is limited to what I have read over the years, and to conversations with liver donors I have known. All I could suggest is that you look carefully into the opinions about the relative SAFETY for you of the two methods. If I understand it correctly, in living liver donation a large portion of the liver is cut away for transplant, and so a large number of blood vessels of the donor must be perfectly sealed (which is why the rates of re-admission to the hospital for complications is much higher for liver donors than for kidney donors). I would imagine that the more invasive surgery would enable the surgeons to better see all the repairs that must be done before closure. I don't know if any data is available about the outcomes of the different types of surgery. Has the surgeon carefully explained his/her reasons for insisting on one type of surgery? Please take your time and get well informed on the risks involved in each type.
     I hope some of this helps.
                best wishes,
                     Fr. Pat

Offline sherri

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Re: I feel so much pressure...
« Reply #2 on: March 19, 2013, 07:37:46 AM »
Aaron,

I'm so sorry that your Dad is sick and in need of a liver transplant and that you as a family member feel pressured to donate. You said I've volunteered to donate half my liver to my dad. I'm cool with the idea,. I think a lot of donors feel that way initially. You want to help, you volunteer and then find out what is involved and it scares the heck out of you. Like Fr. Pat, I am a living kidney donor, which is a less complicated surgery than liver donation, especially liver donation adult to adult. You are right to be nervous and anxious about having elective surgery, and elective surgery that is so invasive. I don't know much about minimally invasive liver donation surgery but if it is a new procedure then it is only as good as the surgeons doing it. It takes proficiency. If you were having surgery for your own physical benefit, you would most likely get a second opinion, seek out a hospital that has a good track record in the surgery you were having, make sure you really understood all the complications that could happen to you. So treat this surgery like that. Seek out a second opinion from an institution who is not involved in the surgery, seek opinions from another surgeon, one who is experienced in the surgery that you are more comfortable with and weigh the pros and cons.

Always  remember that you are able to decline at any time during the work up and the team will tell the recipient that something came up during the testing that makes you ineligible to donate. I know that seems difficult for families and especially to a parent. But sometimes, I'm not sure recipients understand the ramifications of living donation and are very focused on their disease. The doctors keep stressing how much better a living donor is and the long wait list for deceased donations so it is hard to imagine anything else. As a healthy person it is hard to be in the recipient's place in a desperate situation. Try and seek out help from a social worker or psychologist who might be helpful with this big decision. Also ask the hospital to put you in touch with other donor who have had both negative and positive experiences. This might be more realistic. There are a few liver donors on this board and you can try and contact them.

Good luck with your decision and keep us posted.

Sherri
Sherri
Living Kidney Donor 11/12/07

Offline lawphi

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Re: I feel so much pressure...
« Reply #3 on: March 19, 2013, 04:04:50 PM »
This is your decision.  It is perfectly acceptable for you not to donate due to the scar.  The center will tell give you a medical excuse not to donate.   
Bridge Paired Exchange donor on behalf of my husband (re-transplant) at Johns Hopkins.

Offline MrMike66

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Re: I feel so much pressure...
« Reply #4 on: March 19, 2013, 09:03:53 PM »
Aaron,

I think its a big deal.  If the scar is important to you.  Don't compromise.  Your parents will have to understand.  You are amazing just to be donating.

Offline GuitarGirl4Gsus

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Re: I feel so much pressure...
« Reply #5 on: March 19, 2013, 11:04:37 PM »
Ok..I'm a newbie. I'm giving a friend of mine my kidney next month. I'm reading all this stuff, cool information. I still don't get it. A scar, this is a concern over a scar? I'm a guitarist. I'd cut off my arm to save my mom. Guitar next to my Jesus is my biggest passion. My recipiant has lost his father and sister due to PKD. Now he's next on teh list, no kidneys in his body. I don't care if they have to cut me wide open to get this kidney to him. Maybe Im just weird.

Offline Fr Pat

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Re: I feel so much pressure...
« Reply #6 on: March 20, 2013, 02:01:39 AM »
     The scars left by the traditional living liver donation surgery are quite large. They are sometimes called the "Mercedes-Benz" scar as they resemble the symbol of that auto-maker, and cover a good portion of the trunk. The scar from the open-cut method of kidney donation is much smaller, and the scars from laporoscopic kidney donation are tiny as compared with the liver-lobe donation scars.
     Each potential donor is different. One may be more upset by one aspect of the surgery, another by a different aspect. It is important that each potential donor be honest about his/her feelings and concerns so that they can be evaluated, and so that helpful advice from past donors can be offered.
     I do remember that some years back a potential donor talked about having a plastic surgeon participate in the surgey to do the final closing using plastic surgery methods that might make the scars less visible. But there was the question of whether that would be covered by the insurance or if the donor would have to pay for that "extra" out-of-pocket. That's about all I know about this idea.

          best wishes,
             Fr. Pat

Offline GuitarGirl4Gsus

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Re: I feel so much pressure...
« Reply #7 on: March 20, 2013, 05:16:26 AM »
My brother was in a bad car wreck about 19 yrs ago. He broke his back which required him to be cut front to back just to save his life. He wasn't  even expected to ever walk, but 6m later he was :) I've always teased him calling him "shark bait" . Cuz I told him his scar was cool, tell teh chics it was a shark attack
. I was called by my transplant rep yesterday and told we lost out apr. 11 date. Praying there a way to get teh week before, but if not who knows how long teh delay is. Then I was told not to tell my recipiant. Who I was face to face with an hour later. Here he is without kidneys  in his body. All this fluid that won't go anywhere all over him. He's one of my daycare littles parents. Also he and his wife are apart of my church family. I'm soo beleiving we won't be delayed. I guess that why teh scar thing hit me so awkwardly. My scar, even if it wrapped around my whole abdomen seems minimal to teh torment my recipiant is living. I can't even imagine have to tell him we've been delayed, even though he's had no kidneys in his body for almost three month already. Even teh financial hardship has place alot of burden on this family. Then to imagine it was my own mom. I've almost lost my own mom due to health issues in several accessions. Now seh is fight dementia. If a scar wrapping around my whole body could restore my moms health, bring it.

Offline sherri

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Re: I feel so much pressure...
« Reply #8 on: March 20, 2013, 07:12:20 AM »
If you look at the posters subject line he says "I feel so much pressure" not "I don't want a scar". Sometimes we focus on what appears to be something less significant than what is actually bothering us. Guitar Girl, you sound as if you are very prepared to enter into an elective surgery for a friend. That is a wonderful gift. I pray that all goes well for you and your recipient and he is well enough to receive your gift. This was more a choice for you to step up and do this. For family, there is an expectation, sometimes from the transplant team (even if they try to be unbiased), from other family members and of course from the potential donor themselves. They love their family member, want to see them well, so the gift to donate often stems from duty, obligation, guilt, and of course love all wrapped into one.

Kidney surgery is very different than liver. There is a lot more risk involved. In the past several years I have been on this forum there have been several liver donors who died giving a portion of their liver to a loved one. See this story about the Ryan brothers
http://www.cnn.com/2010/HEALTH/12/17/live.liver.donation.complications/index.html

In any case, I just want Aaron to know that he is not alone. This is a big decision and living organ donation is not for everyone.

Guitar Girl, again I wish you and your recipient all the best and hope you do get another surgery date as you pray for.



Sherri

Sherri
Living Kidney Donor 11/12/07

Offline GuitarGirl4Gsus

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Re: I feel so much pressure...
« Reply #9 on: March 20, 2013, 09:03:23 AM »
His delima was teh scaring. They found a hospital 100% coverage but they won't do a procedure to reduce teh scaring. I'm praying no matter what he does, he will have teh minimimal scaring possible. Heal way quicker than expected. I'm praying for his dad also. To stay well and able to have his transplant. From my experience now, even getting in doesnt mean time is going to go as planned. I don't want to see him drag his dad through other hospitals trying to get a procedure to reduce a scar effect and then his fathers health tanks in teh process. Oportuinities are so hard to come by. Insurance is turning into a crazy battle. It's unreal. Even my business insurance is changing and making strict demands. I know I am odd. More of a Tom boy than a girly girl. I wouldn't care if I had to be cut like a liver transplant. I don't care if I end up being cut more than planned as long as "faith" my kidney, gets into my friends body. My kidney, now named "hope" will function even better than with two.I'm usually not a harsh or brassy sounding person. Im not tying to be now.I can understand teh youngster not wanting a huge scar, but if something happens to his dad. I'm pretty sure he'd have a change of prespective. I'm not trying to add pressure, but what I'm saying is true. Which is another reason hes probably getting pressure from teh fam.

Offline mkew

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Re: I feel so much pressure...
« Reply #10 on: March 20, 2013, 05:30:53 PM »
It is for NOBODY to judge whether someone's change of heart or mind is a good enough reason. If you suddenly develop "the willies" about it, that is your choice. I am waiting to donate a kidney to a friend, but I said from the start (before I had done much research) that if it wasn't laparoscopic, I wouldn't be able to bring myself to do it. That was totally valid. If I'm not as all-sacrificing as GuitarGirl it just means we're different people with different tolerances. Guitar Girl, you sound very dedicated and sure of your decision but I would encourage you to be compassionate and not judge harshly another person's experience or feelings. It's rough.

Aaron, in your shoes I would probably do a lot of meditating or praying or whatever it is that you do to get in close touch with that small voice inside you that knows your innermost feelings, and go with it. You are going to be needing that body of yours for a long long time and you need to be comfortable with any consequences of the surgery.

You might also want to speak with another surgeon and see what your options are. You should only be operated on by someone that you are completely comfortable with.

I feel for you, the pressure must be so great. But please consider: YOU are not "putting them through this again," this is just the process they have to be in right now, and you can help support them with this. It does not have to be at ANY cost. There is plenty you can do to support them without doing something that you are not at peace with.

You're a good daughter. You are not selfish. Look at all you've done already! You don't have to do everything. Peace to you.

Offline tjhurley

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Re: I feel so much pressure...
« Reply #11 on: March 20, 2013, 08:42:17 PM »
Donors can have surgeries scheduled at their convenience. Donors can require the surgery to be performed in the manner they find more comfortable. Donors can have ice cream - if it doesn't cost the recipient extra.

We don't want anyone selling a liver portion, kidney or lung for ice cream.

Donors should never feel obligated to give up an organ or partial organ. 

Good luck and best wishes!

Janet
Kidney donor
Wife of a kidney donor
Mom of kidney recipients

Offline SWB

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Re: I feel so much pressure...
« Reply #12 on: March 20, 2013, 09:50:21 PM »
Aaron,

I just wanted to state that every donation process is unique.  Everyone's journey through the donation process is different.  Family dynamics and situations add complexities that can't be adequately communicated or described.  I believe that it is crucial that you are able to be at peace with a decision to donate and that the decision is yours.  Anxiety is totally understandable.  But, the pressure to donate by others and/or lack of support by those around you can make you feel like you are being judged or cause you some significant health issues yourself. 

If you are feeling pressure to donate already and you have some concerns regarding the longer term scaring, etc. then work through those concerns for sure.  And, the transplant coordinator should reiterate that donating is not for everyone.  You have until the very last minute to back out and they will simply tell the recipient that some health condition or other issue has caused a last minute issue resulting in you not being a suitable donor. 

In the end this is still a major surgery.  It was one of the greatest things that I ever did (and for me was such a simple decision).  However, I also recognize that it is NOT the right decision for everyone.  And, for the issues cited, everyone situation is different.  I believe deep down that it is crucial to support those who decide to donate and those that do not.  I am very glad to see that you are at least giving thought upfront on what is right for you.

I wish you an environment of support and encouragement on your decision.  Know that you are supported by folks here regardless of the decision you make.  Would love to hear the final outcome.

Godspeed,

Scott
Scott
Donated right kidney to uncle
October 18, 2012 at University of Alabama (UAB)

Offline GuitarGirl4Gsus

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Re: I feel so much pressure...
« Reply #13 on: March 21, 2013, 10:35:05 AM »
I guess my attitude is really related to other reasons not related to transplants. Certainly don't want to sound critical of this youngster.I can call him that, I turn 44 Saturday. My mom has progressive dementia. I'm beleiving for a miricle, but without one, one of my best friends,my mom won't know me within a few years. They also predict loss of motorskill and possibly death. I can save my friends life and give him my spare kidney, but in teh physical there's nothing I can do for my mom. There's no transplant where they could just suck out some brain juice. Maybe there could be one day. I'm beleiving for a cure. If I could, if there was a way, Id give up anything. My sight, my hearing, my guitar playing hands. I suffer pain, I'd take scars on my face, anything! If here was a physical way to save my mom. I wouldn't delay, first chance, first opportunity. So my prospective is rather unfair and slanted to project at this young man. Sorry if I came across mean. I'm sure he will eventually post a successful transplant storey. I'm really praying his scar will heal even better than doctors have ever seen. Same as Im beleiving teh Lord will heal my mom. I've almost lost her so many times to other health issues and seh is still here and still knows my name. I will always and forever know hers no matter what happens.

Offline Aaron.3.Moore

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Re: I feel so much pressure...
« Reply #14 on: March 25, 2013, 09:26:29 PM »
I wanted to thank you all for your advice and thoughts on this difficult time for me. At the moment I've decided to go forward with the vetting process for the surgery. I look forward to talking to the surgeon. I feel better about the incision (still not wild about it though). I think I needed some time to grapple and process what's going to happen to me and now I feel okayish about it. I want to do this for my family, and I'm clinging to that at the moment.

Again, thank you for your thoughts. I'm sure that there will be plenty more bumps on this roller coaster ride to keep you updated on. :)

 

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