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bhamster
@bhamster

Posts: 2
Joined: Dec 02, 2018

Thinking about partial liver donation

Posted by @bhamster, Sun, Dec 2 2:31pm

Hi there, I have a friend who needs a liver transplant. I've started the process to be a donor. But I have questions (and concerns) that don't seem to be covered in the website pages I've seen. I'm a very healthy 45 year old male. I exercise regularly, and I am on no medications.

1. I would need to fly to the Mayo clinic as I live in Seattle. Do I really need to stay in the area for 2-3 weeks afterwards? I can't fly home once discharged from the hospital?
2. It says most people can go back to week within 6 weeks. I own a business and it can't really function without me. But I can work from home, even from bed for a while as it's mostly computer work. Is this realistic?
3. It says I shouldn't drive for 2-3 weeks after the surgery. Is that also really true?
4. A video I saw from the Mayo said that the risk of a donor dying is 1 in 300. That seems VERY high to me. Is that really the number?

Thanks for any help or guidance you can provide.

REPLY

@bhamster what a generous offer to your friend! I did a work up to possibly be my husband's donor. They want you too stay close so they can monitor to make sure you don't have any post-op problems. The no driving is because you may be on pain medications and also because you can't turn quickly to look over your shoulder. It will hurt. You can possibly work from home, but your body is healing and you will tire easily, again because your body is healing. I honestly don't remember what the chance of dying in surgery is off hand, but if I head been able to go through with it, Mayo is where is want to do it!

Blessings to you,
JoDee

You are awesome for looking into donating, its an amazing experience.
I donated a kidney almost a year ago. I think the liver is more complicated but here is my experience.
Mayo tends to err on the cautious side when talking about timelines. If you have a problem, infection etc after surgery, they want to be the ones to take care of you and it could take a bit before you fly home. They told me 2-3 weeks but cleared me after 4 days. It was easier to recuperate in the hotel for a week, plus I was in MN & live in OR & flying for that long sounded painful.
I'm self employed & fairly physically active at work & went back after a month. I was a little slow & still had 2 weeks of lifting restrictions to follow. In a less active job, I probably would have gone back sooner.
They told me not to drive within 24 hours of taking pain meds but I only used them for a week. I don't know if the seatbelt/airbag situation is different with a liver.
1 in 300 does sound high, I'd definitely check that. How far have you gotten in the procces. I think a nurse/social worker called me after the questionnaire & again after initial lab work at home. I asked her a lot of questions & asked more at my 2 day evaluation at Mayo. Every one that you talk to at Mayo will be working in your interest (rather than the recipient's) they want you to donate but they want you to live a long, healthy life afterwards.

@mauraacro , thanks for the reply. I've just submitted the questionnaire, so still waiting for a call back. I appreciate the information about your situation.

Hello @bhamster,
Welcome to Connect! You ask great questions about organ donation. We will do our best to provide you with answers to your questions, but your best source of information would be to speak with a living donor nurse coordinator. If you have not done so already, once you apply to be a donor at the hospital where your friend is being treated, they will provide you with the name and phone number of a nurse coordinator. This nurse is your source of information and the person who can provide you with the best responses to your questions. A discussion with a donor nurse coordinator does not mean that you are proceeding with donation. You are welcome to opt out of your decision at ANY time during the process. Now to hopefully provide some added information to your questions:

1. Most donors do need to stay in the area where they had their surgery for a couple weeks after donation. The surgical team needs to be sure that your liver is regenerating as it should and your wound is healing well.
2. The 6 week return to work guideline is a general guideline. Some donors would feel better enough to return to work a bit sooner than that, especially those without any manual labor component to their job. However, it is very important to give yourself time to recover. Even being on a computer and managing a business from home could lead to stress for you and could hinder your recovery. You can have the discussion with the nurse coordinator about your specific situation, and he or she can let you know how people with similar jobs have managed their return to work after donation.
3. The driving restriction is real, especially if you are taking any narcotic pain medication during your recovery. Again, the nurse coordinator can assist you with more information about driving and when other donors have been able to return to that task.
4. The risk of liver donation is quoted as 1:300 chance of risk to the donor’s life. This statistic is based on national and international data that is available to us.
Again, I would encourage you to speak to a nurse coordinator. Our coordinators regularly speak with many people interested in learning more about the donation process prior to making a decision about being evaluated. Please know that at no point in the process are you committed to proceeding. You are always welcome to post your questions and concerns on Connect as well. Our discussion group participants are people who have been transplant patients, donors and caregivers. They have great experiences to share with you. Best of luck to you in your decision.
-Kristin

I have no experience with liver transplant but I did have a large liver resection done in January 2018. It was a rough recovery and still ongoing. I do think it is amazong and selfless of what you're thinking of doing. Giving someone a new lease on life.
First 2-3 wks no driving is the Dr. Recommendation. Reality it will likely be a bit longer as of moving side to side to look out both ways will be painful and restricted.
I'm a non drinker and non smoker. Was in pretty good shape at 42, walked 2-4 miles, could run 2mi and stayed active playing basketball with my kids etc.
Energy gets zapped out while growing your liver, I'm talking aboit narcolepsy type sleep. Still get fatigued/drained.
Key to recovery is prior to surgery walk/run/swim. Increase your cardio and your leg muscles, these will help you displace the strain on abdominal muscles when doing simple things like going to the bathroom, getting in and out of bed, brushing teeth (do it slowly it will hurt) etc. Stay on top of your meds, don't let the pain creep in bc it's harder to control after.

Be positive, I could do some computer work early on, but first week or so you'll be pretty drugged up. Make sure you do your therapy and as soon as they say you need to get up and move, push through that pain. Staying Still and in bed will only make it worse. Within a week i was back to walking half a mile (with someone next to me).
Most important take your time, listen to your body and Drs.

Liked by gingerw

@islandmomma

I have no experience with liver transplant but I did have a large liver resection done in January 2018. It was a rough recovery and still ongoing. I do think it is amazong and selfless of what you're thinking of doing. Giving someone a new lease on life.
First 2-3 wks no driving is the Dr. Recommendation. Reality it will likely be a bit longer as of moving side to side to look out both ways will be painful and restricted.
I'm a non drinker and non smoker. Was in pretty good shape at 42, walked 2-4 miles, could run 2mi and stayed active playing basketball with my kids etc.
Energy gets zapped out while growing your liver, I'm talking aboit narcolepsy type sleep. Still get fatigued/drained.
Key to recovery is prior to surgery walk/run/swim. Increase your cardio and your leg muscles, these will help you displace the strain on abdominal muscles when doing simple things like going to the bathroom, getting in and out of bed, brushing teeth (do it slowly it will hurt) etc. Stay on top of your meds, don't let the pain creep in bc it's harder to control after.

Be positive, I could do some computer work early on, but first week or so you'll be pretty drugged up. Make sure you do your therapy and as soon as they say you need to get up and move, push through that pain. Staying Still and in bed will only make it worse. Within a week i was back to walking half a mile (with someone next to me).
Most important take your time, listen to your body and Drs.

Jump to this post

I want to welcome you, islandmomma @islandmomma, to Connect. I am happy that you have taken the time to share your experience and that you are doing well. I agree that taking good care of yourself is essential for any procedure. I am a liver/kidney transplant recipient, and I can identify with some of what you have experienced. Like you say – Listen to your body and doctors is important.

I do not know (and am not qualified) to know how much of your own liver was involved with a 'rather large resection'. Nor do I know how much of a donor liver is used for a living donation. That might also affect the total recovery, as well as individual differences and health.

Are you back to 'normal' now?

Liked by islandmomma

@rosemarya

I want to welcome you, islandmomma @islandmomma, to Connect. I am happy that you have taken the time to share your experience and that you are doing well. I agree that taking good care of yourself is essential for any procedure. I am a liver/kidney transplant recipient, and I can identify with some of what you have experienced. Like you say – Listen to your body and doctors is important.

I do not know (and am not qualified) to know how much of your own liver was involved with a 'rather large resection'. Nor do I know how much of a donor liver is used for a living donation. That might also affect the total recovery, as well as individual differences and health.

Are you back to 'normal' now?

Jump to this post

Yes, for the most part. I can do all house chores, drive, hike, play basketball etc. I do still have to be careful as at times I feel a pull from inside where they cut. My tumor was 14cm x 10cm. I have a J hook scar from sternon down the middle and ends on my right hip. I had my right lobe resected. I do have scaring, calcification and more tymors and cysts so I have to account for that in how I feel. However I feel much, much better than before.

This was the first day without the wound vac and wrap.

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@islandmomma

Yes, for the most part. I can do all house chores, drive, hike, play basketball etc. I do still have to be careful as at times I feel a pull from inside where they cut. My tumor was 14cm x 10cm. I have a J hook scar from sternon down the middle and ends on my right hip. I had my right lobe resected. I do have scaring, calcification and more tymors and cysts so I have to account for that in how I feel. However I feel much, much better than before.

Jump to this post

islandmomma, Houshold chores, hiking, driving are something that I celebrated as I healed. Although the joy over housework has since diminished! I used to walk with friends for exercise, but they have all quit for various reasons. I have been going to the gym, and I was too aggressive with some of the equipment in the beginning, and pulled perhaps more that I should have. I took a break, and now have reached a more workable level for me.
I found it amazing how quickly the outside incision healed. But the inside does take much longer.

@islandmomma

Yes, for the most part. I can do all house chores, drive, hike, play basketball etc. I do still have to be careful as at times I feel a pull from inside where they cut. My tumor was 14cm x 10cm. I have a J hook scar from sternon down the middle and ends on my right hip. I had my right lobe resected. I do have scaring, calcification and more tymors and cysts so I have to account for that in how I feel. However I feel much, much better than before.

Jump to this post

islandmomma, I remember that I celebrated being able to do household chores as I healed! I enjoy that I am again hiking and being active. When I joined a gym, I was fascinated by the machines, and was a little too aggressive, so I have eased off a bit, and have no more discomfort.
I was amazed at how quickly the outside incision healed.

With your experience with liver resection, I want to share a conversation in the Digestive Health Discussion group:
Liver hemangioma/liver resection
https://connect.mayoclinic.org/discussion/liver-hemangiomaliver-resection/

Liked by islandmomma

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