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TransplantBuddies.org Forums » Living Organ Donor Heroes » Thinking about being a living liver donor for my Dad « Previous Next »
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Keri
Member
Username: Keri902

Post Number: 1
Registered: 05-2010
Posted on Friday, May 07, 2010 - 12:32 pm:   Edit Post Delete Post Print Post

My father has been waiting for a liver transplant for 3 years and they recently told him he can do a living donor. Both my brothers were tested and they are not a match. So I am now thinking of doing it. I have a 3 year old son. so much to think about. Recovery and everything. Anyone on here go through this already?
LadyDi
Forum Leader
Username: Ladydi

Post Number: 2280
Registered: 03-2008
Posted on Friday, May 07, 2010 - 02:35 pm:   Edit Post Delete Post Print Post

Welcome to you Keri! What a wonderful thing you are considering!
You have certainly come to the right place - as you have found in other threads there are several liver donors here who would be happy to help with your questions and concerns.
Everyone here is so nice, and very helpful.
I wish you and your Dad the best of luck in your journey.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
My donation story:
http://www.transplantbuddies.org/tbx/messages/28633/34433.html?1256168874

I walk slowly, but I never walk backward - Abraham Lincoln
Keri
Member
Username: Keri902

Post Number: 4
Registered: 05-2010
Posted on Friday, May 07, 2010 - 02:38 pm:   Edit Post Delete Post Print Post

Thank you. yes I have found a few people that have gone through it already. I can't wait to hear from them.

Keri
Liver Giver
Forum Leader
Username: Beteboop

Post Number: 735
Registered: 10-2007
Posted on Friday, May 07, 2010 - 05:13 pm:   Edit Post Delete Post Print Post

Hi Keri,

I'm Dawn and I donated to my brother Anthony 11-19-07. I think that your interest in donating to your Dad is awesome! But I am partial to live liver donors (hee,hee).

Seriously, I would be more than happy to answer any questions that I am able to for you and assist you in anyway possible. Would you be able to post a bit about you and your Dad? What area of the country are you in?

I look forward to communicating with you very soon. You will quickly find that transplantbuddy friends are THE BEST friends to have in our lil world here.

I am sure that Nicole and Tawnya will be contacting you soon and I will send them both messages letting them know we may have another one for our "team" very soon!
Dawn
Forum Leader Living Organ Donation
Liver Donor 11/19/07 to brother Anthony

Good and bad things happen in life, but what matters, what defines us, is how we handle them
Keri
Member
Username: Keri902

Post Number: 5
Registered: 05-2010
Posted on Friday, May 07, 2010 - 05:37 pm:   Edit Post Delete Post Print Post

Thank you so much for writing back to me.
My Dad got MRSA Staph infection and they gave him too much antibotics and it hurt his liver. He has been waiting for a liver for about 3 years. Both my brothers have been tested to give partial liver and were not able.
So now I am debating on do it. Such a hard decision. I have a 3 year old son

I am in Staten Island, New York.
Thank you once again for writing me.
Nicole
Member
Username: Petesinapickle

Post Number: 41
Registered: 05-2008
Posted on Friday, May 07, 2010 - 06:21 pm:   Edit Post Delete Post Print Post

Hey Keri!
Sorry to "meet" you under these circumstances, but I'm glad you're reaching out. What hospital are you dealing with? Columbia Presbyterian by the George Washington bridge was my center! I live in the Bronx so we are pretty close.

I donated to my dad July 23, 2009 and we are doing well!
I'd love to be of any help I can!
Keep your eye on the prize, and your arms around those you love.

liver donor match for dad.
Donated Right Liver Lobe to dad 7/23/09

Columbia PresbyterianHospital NYC

www.caringbridge.org/visit/nicolel
Keri
Member
Username: Keri902

Post Number: 7
Registered: 05-2010
Posted on Friday, May 07, 2010 - 06:32 pm:   Edit Post Delete Post Print Post

I am dealing with Mt Siani. Thank you. I am still going through the stage of making sure I can do this. It is so much to think about.
Nicole
Member
Username: Petesinapickle

Post Number: 42
Registered: 05-2008
Posted on Friday, May 07, 2010 - 07:19 pm:   Edit Post Delete Post Print Post

Mt Sinai is a great hospital. MY Coordinator Diane LaPointe came from Columbria Presby and now she works at Mt Sinai. She is the ABSOLUTE best.. all i can say is it is a huge thing to think about (which you already know) and you have to do what is right for you. If you want we can talk privately my email is smurfet04@aol.com. Looking forward to hearing from you..
good luck with everything!
Keep your eye on the prize, and your arms around those you love.

liver donor match for dad.
Donated Right Liver Lobe to dad 7/23/09

Columbia PresbyterianHospital NYC

www.caringbridge.org/visit/nicolel
Keri
Member
Username: Keri902

Post Number: 8
Registered: 05-2010
Posted on Friday, May 07, 2010 - 07:55 pm:   Edit Post Delete Post Print Post

I will have to keep an eye out for her if I go through with this. If you do not mind me asking how old are you? Do you have any children? I am 30 and I have a 3 year old. If I didn't have my son I think the decision would be a lot easier but because I have him and I love him to death it is very hard. I do not want to not be able to do things with him or be able to be there for him.
Tawnya
Member
Username: Daddys_liver_girl

Post Number: 11
Registered: 04-2010
Posted on Friday, May 07, 2010 - 10:13 pm:   Edit Post Delete Post Print Post

Hi, Keri. My name is Tawnya. I just donated to my father last week. I just got home from the hospital today. My father had Hep C which lead to liver cancer. We found out about his cancer last year. I am very close to my family so my decision was instant.

I was scared at first but I knew in my heart that I wanted to help my dad and for him this was the only way. His melts numbers would never get high enough to receive a cadaver liver. He had cancer and cancer is very unpredictable. The cancer would have taken him before he would be eligible for a cadaver liver so we acted fast. We got his insurance to start a contract with USC because they are the only one hospital who performs live donor in CA.

We told them that I wanted to donate to my father and that I was ready to start the necessary testing immediately. The next week I was meeting with the social worker, the psychiatrist the finical people, the surgeons, nutritionist and the coordinator. I had my primary doctor order me blood work prior to seeing the team so i knew I was my father's exact match.

I passed all the tests with flying colors and they put my dad through chemo to shrink the cancer tumor, and told me I was approved to be a donor. They told me they would call me when my dad was ready for transplant. Sure enough they did. I told them YES I still wanted to donate to my father and they set the surgery date for 4-29-10.

We arrived at USC early in the morning and they started prepping us and the next thing we knew we were on the table, we woke up and it was over.

My dad is doing good and so am I. I'm 37 no children, married, bartend on the weekends and go to college. I have been working out since I was 19. I eat healthy and I am a very fit girl. I am recovering great. The worst thing-- the pain. It's BAD!!! Really bad!

Would I do it again? YES!! In a heart beat! I don't see myself not doing the things I did before donation. In four months. I can eat what I want and drink what I want, including alcohol.

This was a wonderful thing I did for my family and seeing my dad growing stronger each day makes me smile. Just because you have a son doesn't mean you won't get back to your life with him, cause you will.

It's a decision that you can only make. I love my dad so much, I would of done anything to save him. My whole story is posted here. Please feel free to talk to any of us liver donors; Dawn, Nicole, or myself if you have any questions. Being scared is normal, it's OK. i would love to hear more about you. Please send me a message if you would like to talk private. My sis' Dawn and Nicole are amazing people and they too can be og help.

Good luck. I hope to hear from you soon. T
Keri
Member
Username: Keri902

Post Number: 9
Registered: 05-2010
Posted on Tuesday, May 11, 2010 - 12:21 pm:   Edit Post Delete Post Print Post

I am sorry I haven't written my Dad is back in the hospital his ammonia levels are very high. He fell on Sunday at the hospital so now they are checking him for his muscles not being strong and now might put him a rehabilitation center to help him. So much going on.
Tawnya
Member
Username: Daddys_liver_girl

Post Number: 14
Registered: 04-2010
Posted on Tuesday, May 11, 2010 - 08:33 pm:   Edit Post Delete Post Print Post

Keri, I'm so sorry to hear about your father. It does sound like a lot is going on. Is his liver causing these problems? Try to stay positive and strong, you'll get through this. We all will pray for your father. Post whenever you can. Family always comes first. Take care. T
Liver Giver
Forum Leader
Username: Beteboop

Post Number: 737
Registered: 10-2007
Posted on Wednesday, May 12, 2010 - 02:03 pm:   Edit Post Delete Post Print Post

Hi Keri,
I am praying for your Dad. Please keep us updated!!
Dawn
Forum Leader Living Organ Donation
Liver Donor 11/19/07 to brother Anthony

Good and bad things happen in life, but what matters, what defines us, is how we handle them
LadyDi
Forum Leader
Username: Ladydi

Post Number: 2292
Registered: 03-2008
Posted on Wednesday, May 12, 2010 - 03:47 pm:   Edit Post Delete Post Print Post

So very sorry to hear this happened Keri. Prayers go out for your Dad and your family. Please let us know how he is doing.
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo
My donation story:
http://www.transplantbuddies.org/tbx/messages/28633/34433.html?1256168874

I walk slowly, but I never walk backward - Abraham Lincoln
Keri
Member
Username: Keri902

Post Number: 10
Registered: 05-2010
Posted on Wednesday, May 12, 2010 - 03:51 pm:   Edit Post Delete Post Print Post

Thank you everyone, my dad has now been put in a rehabiliation center for at least a week to build up his muscles. he is so weak. I have scheduled my testing to become a donor for him. I go in a few weeks. I was a smoker so on top of all the stress of everything with my dad, work and a 3 year old son I had to quit smoking. So stressed out.
Tawnya
Member
Username: Daddys_liver_girl

Post Number: 26
Registered: 04-2010
Posted on Saturday, May 29, 2010 - 01:18 pm:   Edit Post Delete Post Print Post

Keri, how is everything? Haven't heard from you in a while. How is your dad?
Keri
Member
Username: Keri902

Post Number: 13
Registered: 05-2010
Posted on Saturday, May 29, 2010 - 01:43 pm:   Edit Post Delete Post Print Post

Everything is going. I went for all the tests Thursday and Friday. I found out that i have gall stones. I have been in pain but thought i just pulled something in my back. I am waiting for my results to see if i am okay to proceed. I am still scared. I am so terrified that something will happen to me and I will never see my son again. But at the same time I want my Dad around longer.
I hope you are doing well!
Tawnya
Member
Username: Daddys_liver_girl

Post Number: 28
Registered: 04-2010
Posted on Sunday, May 30, 2010 - 11:01 am:   Edit Post Delete Post Print Post

Sorry to hear about you having gall stones. I've heard they are very painful and you hurt your back. Gosh, you've hit a little bump in the road to say the lest.

I know donation is scary. There are 3 liver donor's on this site and all of us are fine today. Ask to speak with some of the donors at the hospital your procedure will be done. No donor's died at my hospital and if the same applies to yours, then you shouldn't worry. I was so scared too, and in the end , it wasn't as bad as I was making it out to be. The pain was bad but that was it. Now, I'm just recovering. Mainly, my incision. No pain, just waiting for all the glue and scabs to fall off.

The decision to donate is ultimately your decision. Sounds like your at a cross-roads. You'll figure out if you want to do this or not, and if it's not meant to be, then it is what it is. Good luck. Hope to hear from you soon. T
Keri
Member
Username: Keri902

Post Number: 14
Registered: 05-2010
Posted on Sunday, May 30, 2010 - 11:19 am:   Edit Post Delete Post Print Post

The doctors said that as far as they can tell the stones should not be a problem if I go ahead with everything i will loose my gallbladder anyway.
They had one death at mt siani but it wasn't there fault.

Just so so so scared!!!!
Heather
Forum Leader
Username: Heather

Post Number: 2927
Registered: 05-2003
Posted on Sunday, May 30, 2010 - 04:14 pm:   Edit Post Delete Post Print Post

Hi Keri. I don't think I welcomed you unless it was in another thread. I know you are scared and it is normal. I always tell people..do not do this just because others want you to or you feel pressured to do so. I understand your love for your dad. I honestly did NOT want to donate...but I loved my dad and knew it was the right thing for me to do. I was scared to death also. Especially the few weeks before the surgery..when it was like..oh my ...this is really happening... Just make sure you are doing it for the right reasons.

My concern for donors is that ...and especially for liver donors...there is not a lot of research on how they are doing 10 years from now...or 15...and that goes for kidney donors also. There are more of us out there who have been donating longer than liver I think...but so many times the transplant facilities or the doctors do not follow the donor through the years. I know some places do and I am thankful for that. I don't mean to make you think twice or change your mind..just saying what I feel. I have always been the one on here who can't go without mentioning the risks or whatever and thinking of the future...I guess with the liver it grows back pretty much..whereas the kidney..you are still left with just one and it does not double in size as far as I have been told. It just works harder...so we don't ever get our full function back. And we must be so careful..or SHOULD be about meds we take..even seemingly harmless ones like Ibuprofen...anyhoo....

I am sure you will make the right decision. Who ever wants to go under the knife when they are perfectly healthy? No one. But to see your loved one living again and having a new lease on life is priceless.

You are doing a wonderful thing, Keri. Keep in touch with us.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Keri
Member
Username: Keri902

Post Number: 15
Registered: 05-2010
Posted on Sunday, May 30, 2010 - 09:15 pm:   Edit Post Delete Post Print Post

Thank you Heather. I agree it is scary since they do not know how people are after they donate their liver. I am feeling the same as you. I do not want to donate but it is the right thing. I have decided that if I am cleared I will be going through.
Liver Giver
Forum Leader
Username: Beteboop

Post Number: 748
Registered: 10-2007
Posted on Sunday, May 30, 2010 - 10:14 pm:   Edit Post Delete Post Print Post

Keri,
Although we do not know exactly what to expect 10 or 20 years from now as liver donors well... nobody knows what to expect from life that far in advance.
I don't regret for a minute donating to my baby brother and I would do it again without a moments hesitation if the situation presented itself.
We all live our lives part genetics, part environment... if you feel this is right for you, don't look back. If you are feeling pressured into it, than you need time to reflect and really see how you feel.
As a liver donor I would be proud to call you sister, as a person and a relative of an ill person I just ask that you are educated as possible prior to making your decision. I am happy to help in anyway I can. just let me kow
Dawn
Forum Leader Living Organ Donation
Liver Donor 11/19/07 to brother Anthony

Good and bad things happen in life, but what matters, what defines us, is how we handle them
Heather
Forum Leader
Username: Heather

Post Number: 2928
Registered: 05-2003
Posted on Monday, May 31, 2010 - 07:52 pm:   Edit Post Delete Post Print Post

As I read my post..I did not mean I did not want to donate to my dad. I meant I did not want to go through a major surgery and the unknown. I had never had a baby or been in the hospital for anything so I was very scared of the whole idea. I would do it again for my dad even though now I am going through a lot of physical problems not related to donating my kidney..but every decision about tests or medicine must be made with the fact that I do not have normal kidney function and must watch what is filtered through my remaining kidney.

Keep in touch with us Keri and we will be here for you as you go through your adventure and recovery!! There are getting to be more living liver donors than kidneys on here!!
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Liver Giver
Forum Leader
Username: Beteboop

Post Number: 750
Registered: 10-2007
Posted on Tuesday, June 01, 2010 - 05:43 am:   Edit Post Delete Post Print Post

Heather, we all know where your heart is and that your donation changed your Dad's world! When I read your post I never even thought that you were indicating you had some thoughts about not doing it, although I believe most of us did at that time. I have been prayin alot for your health and I believe that God will protect his angel Heather!

Keri, close follow up seems to be going by the wayside as more live liver donations are successful. Lahey Clinic follows me for a mandatory 5 years and I am happy about that. I am involved in a life study that is monitoring and tracking living liver donors. Check with your center for their follow up protocol. If it seems like a pain in the patootie then it is a good one.

Chin up, smile, and pray that this is the Lord's plan... you will find the right answer or it will find you!

by the way, I do not regret for one minute my donation to my brother. My only regret is that he put it off for so long that the outcome was not as I had dreamed it to be. again, that was his choice. I just have had to learn to live with it.
Dawn
Forum Leader Living Organ Donation
Liver Donor 11/19/07 to brother Anthony

Good and bad things happen in life, but what matters, what defines us, is how we handle them
ono
Member
Username: Ono

Post Number: 96
Registered: 06-2009
Posted on Tuesday, June 01, 2010 - 06:18 pm:   Edit Post Delete Post Print Post

Hi,
My daughter was my donor for my liver transplant in April 2009. For the first month she needed lots of rest. Then, gradually she regained her energy. She couldn't lift heavy things for a while but she went back to work after 6 weeks and her liver was entirely back to normal less than 3 months post tp.
She hasn't had any problems.
I am grateful and so happy she offered this gift.
Good luck.
Heather
Forum Leader
Username: Heather

Post Number: 2934
Registered: 05-2003
Posted on Tuesday, June 01, 2010 - 08:36 pm:   Edit Post Delete Post Print Post

Hi Ono..that is wonderful that your daughter gave you such a wonderful gift. How old is she?
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Keri
Member
Username: Keri902

Post Number: 16
Registered: 05-2010
Posted on Tuesday, June 01, 2010 - 09:02 pm:   Edit Post Delete Post Print Post

Thank you Ono for writing to me. I have decided that if I am compatable i am going to go through with it. I have to do something to help my dad.
ono
Member
Username: Ono

Post Number: 98
Registered: 06-2009
Posted on Tuesday, June 01, 2010 - 10:21 pm:   Edit Post Delete Post Print Post

Keri,
You are more than welcome. I think the liver's ability to regenerate itself is amazing. I hope everything works out as well for you and your dad as it has for me and my daughter.

Heather,
My daughter was 31 at the time of the transplant. I was 55.
At first my sister offered but they didn't want anyone over 50 and she was also very frightened.
My husband offered but he too was past 50.
My daughter has always been interested in the body, isn't squeemish and was an ideal candidate.
Now I joke with her about how much her liver loves to eat. I really do eat more now and it hasn't been a problem.
Tawnya
Member
Username: Daddys_liver_girl

Post Number: 32
Registered: 04-2010
Posted on Saturday, June 05, 2010 - 02:02 pm:   Edit Post Delete Post Print Post

Keri,

The scariest part of donation, are the days leading up to the big day. I was like you, scared, unsure of my future health, my ability to do everything I did before, would me and my dad be OK when it was over. I had all those thoughts. I would be on the phone with Dawn (LiverGiver) and Nicole for hours talking to them about their experiences. I must say, talking to them was the best thing in the world to me because they eased me and I knew it was going to be OK.

Let me tell you, I was worried over nothing. I know everybody's different post-op, but it wasn't as scary as I thought it was going to be. Like I said, I was asleep and then I woke up and it was over. From there, I just started to recover.

As far as how donor's are doing 10-20 years from now, it is unknown. My hospital only checks up with me for the first year. Your liver regenerates and functions the same way it did before. I know Dawn is almost 3 years out and she feels great! I feel like the surgery never happened. I feel good. I don't think they would do this procedure if you couldn't go on and live your life.

If you end up doing this for your dad, we'll all help you through it, and I bet you'll do great. By the way, did your hospital tell you when or why that one donor died?
Keri
Member
Username: Keri902

Post Number: 18
Registered: 05-2010
Posted on Saturday, June 05, 2010 - 08:00 pm:   Edit Post Delete Post Print Post

Thank you Tawnya.
I believe the death was a while ago, they said the person got stomach problems that caused an infection. (it was from seafood from outside the hospital)
Tawnya
Member
Username: Daddys_liver_girl

Post Number: 33
Registered: 04-2010
Posted on Friday, June 11, 2010 - 06:22 pm:   Edit Post Delete Post Print Post

That's a good thing, the donor didn't die on the table or while re-cooperating from the procedure.
OK. Thanks, I know that makes me feel better. How are things going? T
Keri
Member
Username: Keri902

Post Number: 19
Registered: 05-2010
Posted on Friday, June 11, 2010 - 06:37 pm:   Edit Post Delete Post Print Post

I am hanging in. I have to go see a liver specialist next week my alt liver enzymes are high.
It could be my gall stone
s. How are you?
Tawnya
Member
Username: Daddys_liver_girl

Post Number: 34
Registered: 04-2010
Posted on Saturday, June 12, 2010 - 04:12 pm:   Edit Post Delete Post Print Post

I hope everything woks out. I am doing fine, thanks. No problems, recovering well. Let me know how things turn out. How is your dad? T
Keri
Member
Username: Keri902

Post Number: 20
Registered: 05-2010
Posted on Friday, June 18, 2010 - 01:41 pm:   Edit Post Delete Post Print Post

I went for my follow up with the dr regarding my liver enemies and I have been put on a diet to loose at least 18 lbs in 3 months. The dr feels if i loose weight the levels will go down.


I am sad since I have to wait longer to help my dad. I feel bad for him. he was in the hospital again this week. Filling back up with fluid. I understand the dr are looking out for the both of us.


I hope you are doing well!!
Heather
Forum Leader
Username: Heather

Post Number: 2967
Registered: 05-2003
Posted on Wednesday, June 23, 2010 - 06:47 am:   Edit Post Delete Post Print Post

Hi Keri. 18 pounds in 3 months is do-able..hard perhaps but you can do it. Maybe if you can lose it a bit more quickly ( not in an unhealthy way of course)...but with exercise and staying away from the foods you should not eat...you can help your father sooner than 3 months. If it is meant to be, your dad will hang on. and who knows..perhaps he will get the call for tx before that? I wish you both the best. Please keep in touch..and please let us know how you are doing on the weight loss. Many of the donors here were required to lose weight before donating.
Heather

Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
Tawnya
Member
Username: Daddys_liver_girl

Post Number: 35
Registered: 04-2010
Posted on Saturday, June 26, 2010 - 02:13 pm:   Edit Post Delete Post Print Post

Hi Keri. You know, Nicole had to lose weight in order to donate to her dad. She had to lose more than 18 pounds, so consider yourself lucky. You can do it. Plus going into this, you want to be a healthy as you can. Besides the weight loss, how are you, and your dad doing? T
Liver Giver
Forum Leader
Username: Beteboop

Post Number: 754
Registered: 10-2007
Posted on Saturday, July 03, 2010 - 02:15 pm:   Edit Post Delete Post Print Post

Hi Keri,
I apologize for being awol for a bit. How are things going with your testing and your weight loss. I worked with a personal trainer during my brother's illness and that really put me in pristine health by the time he accepted my offer of a liver lobe. Now almost 3 years later I am training to run a half marathon for the American Liver Foundation in Anthony's memory. I would have never thought I would even consider running a mile never mind 13.1. Who knows if all goes well I may be running the Boston Marathon in 2011.
My point is that you will be motivated to lose the weight that is needed and we are here to help you. Please let me know how things are going and if you want to chat then send me an email and I will forward my phone number to you!

I hope to hear from you soon.
Dawn
Forum Leader Living Organ Donation
Liver Donor 11/19/07 to brother Anthony

Good and bad things happen in life, but what matters, what defines us, is how we handle them
Keri
Member
Username: Keri902

Post Number: 21
Registered: 05-2010
Posted on Wednesday, July 07, 2010 - 12:15 pm:   Edit Post Delete Post Print Post

Thank you for writing me. I joined weight watchers i lost a few pounds. and I got Wii fit. Dad is back in the hosipal. He gained 13 lbs of fluid in about a week.
annawannahelp
Member
Username: Annadiggsmike

Post Number: 1
Registered: 03-2011
Posted on Friday, March 18, 2011 - 04:04 pm:   Edit Post Delete Post Print Post

Thanks so much to everyone who posted here - I am just starting to look into this as a back-up if necessary since my dad got the not-such-great news this morning. If I could give him part of my liver to help him I definitely would, although it seems like of course there are frightening steps to consider along the way, but this whole post has helped me start to get a handle on what is going on. Thank you so much for sharing you personal testimonies. Bless you all~
Heather
Forum Leader
Username: Heather

Post Number: 3251
Registered: 05-2003
Posted on Friday, March 18, 2011 - 09:06 pm:   Edit Post Delete Post Print Post

Hi Annwannhelp. Welcome to the site. I'm sure glad you found this thread. There are others as well dealing with living liver donation. Please let us know if there is anything we can answer or help you understand..I am a living kidney donor but there are several liver donors as well. Please keep us updated on how things go for you! Wish all the best for your dad.
Heather

Forum Leader - Living Organ Donation
Heather's Blog

EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago

DONATE LIFE
livingdonor101
Member
Username: Livingdonor101

Post Number: 1
Registered: 03-2011
Posted on Tuesday, March 22, 2011 - 04:07 pm:   Edit Post Delete Post Print Post

I've been an independent living donor advocate for almost three years and it's a bit disturbing to me how quickly Heather's post about the risks to living liver donors was dismissed.

Since the huge majority of living donors are emotionally related to the recipient, we're all motivated by love and concern. The last thing we want to do is consider the dangers to ourselves while trying to help someone we care about. However, it's imperative we don't lose sight of what we're risking.

A2ALL is the first and biggest living liver transplant study in the US, covering 9 of the biggest liver programs in the country*. So far, they've published 30-some papers on their data, with more on the way. The bottom line is this: 40% of living liver donors experience complications as a result of the procedure. There have been deaths, and there have been severe psychological issues, including suicides, drug overdoses and the like.

Two liver donors died in 2010 - one in Lahey and one in Colorado. Neither hospital had 'lost' a living donor before. I am familiar with both cases, as I am with the Mike Hurewitz and Danny Boone cases from a few years earlier.

Mike is the 'seafood' referred to earlier in this thread, which is a complete falsehood. The center was sanctioned and fined for 'woeful' care, successfully sued for their negligence, and the state of NY implemented living donor protections as a result of his case.

Mike was put in a room on the wrong floor, not for transplant patients. When he began bleeding, there were too few nurses on duty, and Mike's surgeon could not be located, so Mike bled to death. There was no seafood and there was no infection. It's reprehensible the center continues to perpetrate this lie.


Yes, the liver regenerates after donation, but there is no data to determine the quality of the function. There is also no way to know if there are any long-term consequences to losing such a large chunk of one's liver. Transplant centers are so unconcerned with their living donors that they've refused time and time again to follow them long-term, even though they do so for their recipients. And right now, living donor liver transplants are no more successful than those from deceased donor organs.

It is terrifying to watch someone we care about deteriorate, especially when that fear is accompanied by helplessness. It's totally understandable that when given the option (in this case, donating the majority of one's liver), one grabs at the opportunity. However, we all have responsibilities to multiple people in our lives, and we must strive to balance them. Keri's father is a grown man; her son is a small child. To whom is she most obligated? Who will suffer more in the case of her death or debilitation?


http://www.livingdonor101.com/living_liver_donors.shtml <- Here's more data on living liver donation, including data, complications, etc.




*a few programs have shifted out and news ones in, so I may be wrong about the exact number, but I'm really close.
Liver Giver
Forum Leader
Username: Beteboop

Post Number: 823
Registered: 10-2007
Posted on Tuesday, March 22, 2011 - 05:19 pm:   Edit Post Delete Post Print Post

would you please explain what exactly an "independent living donor advocate" is, who/where requests your advocacy, what your training is and how you became involved?

I will not dismiss ALL of the information you posted, however, I will speak directly to Dr Pomfret of Lahey Clinic. Dr Pomfret was my surgeon as the donor and I had many meetings with her and the team before my resection. It took a few months for me to complete all of the testings before she determined if I would be a good candidate for the procedure. I NEVER for a moment felt that I was being pushed into the surgery as a result of my brother's illness. In fact, every time and everyone I was evaluated by at the center told me that all I had to do was tell them I didn't want to do it and they would be my out. My family would have never known that it was my decision. There was no pressure, ever.

I was fully informed of the dangers, risks and lack of long term studies regarding living liver donation and it was my decision, solely, to continue. I had faith in my surgeon and faith in my God that I would be safe.

You speak of drug overdoses and suicide by donors, was there a history of drug use prior to donation? Did the psychological evaluations indicate any depression or history of depression in the donor? I know that Lahey would not continue evaluating a donor if this were the case and that in fact I was drug and alcohol tested numerous times prior to resection.

Living liver donation has been around since the late 90's??? and there were 4 reported deaths in the US. I dismiss Asia, China and other countries studies and results as they are not held to the same standards as the US. In fact, other countries have been known to have surgeons at executions to procure organs which is something that would never occur in the US. So to factor in other countries study results could be considered the equivelant of apples to oranges.

My liver function was 100% 6 weeks after donation. 100%! That is not a study, that is a fact. My liver regenerated to 83% of its original volume so it is a bit smaller but the liver will actually decrease in size if placed in a recipient that it is to large for. How can there be long term studies for losing "such a large chunk of one's liver" if the liver regenerates? You can't study the loss of something that has been found.

I am followed by Lahey and stay in touch with my transplant coordinator. I also am actively involved with the American Liver Foundation. In fact, I am running the Boston Marathon on the Run for Research team in less than 4 weeks. I am extremely healthy and that is a life style I choose. I could very easily go out and be reckless with my life. Could I blame the outcome of those choices on my surgery?

I spoke with 3 other living liver donors before their resections and just this week spoke with a woman who is donating on April 22nd. I have always said to them that they have to weigh their own risks and make informed decisions about their choices. I stand by that. If someone feels a surgeon does not have their best interest at heart than they have the option to not see that surgeon.

It is also unfair to insinuate that the surgeons only have the recipients best interests. You have TWO teams in this procedure one for the donor and one for the recipient. My team had little knowledge of my brother's condition as they did not need to know. They were there for me and my health.

Of course, I will not deny that there are risks up to and including death. There are complications that develop and twenty years from now there may be more discovered. My hope is that research provides us with ways to reverse the results of diseased livers and that we don't need donors, living or deceased.
Dawn
Forum Leader Living Organ Donation
Liver Donor 11/19/07 to brother Anthony

Good and bad things happen in life, but what matters, what defines us, is how we handle them
ono
Member
Username: Ono

Post Number: 130
Registered: 06-2009
Posted on Thursday, March 24, 2011 - 09:21 pm:   Edit Post Delete Post Print Post

I'd like to add my two cents to the last two comments.
I had my surgery in Taiwan. There all liver donors, whether living or cadaveric, have to be related to the recipient.
The head surgeon was trained in the US. He's done over 600 transplants. They haven't lost a single donor and have fewer complications than US hospitals.
I was very impressed at the number of successful live liver transplants were done there every week.
Now, I did have problems with the aftercare, but that is another story.

The liver's ability to regenerate has been known since ancient times. Remember the Greek myth Prometheus?
There is always a potential danger involved when one undergoes anesthesia or, I might add, drives a car. Life is dangerous to one's health!
Going for Gold
Member
Username: Mistproductions

Post Number: 6
Registered: 03-2011
Posted on Thursday, March 31, 2011 - 11:37 pm:   Edit Post Delete Post Print Post

Jill Morton is a kidney recipient going to the World Transplant Games this June in Sweden. She is an undefeated gold medalist and will be competing for Team USA.
Jill is currently filming a documentary following her train and compete in the games called Going for Gold: A Celebration of Life.

Jill received her kidney from a unknown donor who found her through a chat room. Only a few years after her transplant, Jill is in better health than she imagined she could be.

Jill hopes to raise enough money to bring her donor from Australia to the games.

Show Jill your support and help organ donor awareness by linking to us @ www.MIST-Productions.com
GOOSE
Member
Username: Goose2903

Post Number: 4
Registered: 03-2011
Posted on Thursday, April 07, 2011 - 08:04 am:   Edit Post Delete Post Print Post

I am also a liver donor (probably the most recent) having donated 69% of my liver to my father in law about 2 months ago. . The operation was conducted in Chennai (India) by a Surgeon who has more than 1300 successful surgeries to date. I agree with Liver Giver's assessment, as i was asked numerous times whether i was sure of my decision and was informed of all the risks.
I am back at work now , full time and apart from a little fatigue at the end of the day, I have no complaints or complications. In fact I am living a healthier life as I have had to give up smoking & alcohol prior to surgeons agreeing to operate on me , and I have not restarted post surgery. Also as per the advice of the doctors I am eating much healthier.
Blood tests show liver functions almost at pre-surgery levels and all other vitals as normal. I couldn't ask for anything more.
But , of course, the decision to donate has to be ones own. There are risks involved and there is a recovery period which is considerable.
The crux of the matter is that each donor must be well informed enough of his/her own health condition prior to donation. An informed donor will always be a successful one.
Liver Donor to Father in law
jenn
Member
Username: Jaydee

Post Number: 2
Registered: 05-2011
Posted on Friday, May 20, 2011 - 03:15 pm:   Edit Post Delete Post Print Post

I came across this post as I am thinking of being a live liver donor as well. My mom is not on the transplant list yet but she has been having some frequent complications now with her liver. She has an appointment with the transplant clinic next month to get checked. I have already started the process of becoming a potential donor by getting my blood type tested. It's really nice to be able to talk to people who have also donated a portion of their liver and I really enjoy reading about their stories and experiences.

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