Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

Note there are several online zoom support groups for transplant patients. Mayo Jacksonville, Mayo Rochester and Mayo Phoenix all have zoom meetings. If interested I can email you info on those meetings. There is also an online zoom meeting sponsored by the Transplant Community Alliance which meets weekly on Thursday at 7 pm Arizona time. Most patients are kidney and liver transplant patients (pre and post) but all transplant patients and their caregivers are welcome.

TCA
https://www.transplantaz.org/

TCA Zoom Meeting
Meeting ID: 873 0014 4780
Passcode: 599315

Zoom meeting.

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Hi, liver transplant recipients, does anyone know whether you had to fast from food or water before a routine annual abdominal ultrasound?
I’m scheduled for one and don’ t remember what I did last year. The only instruction that I see related to eating beforehand is that you might need to avoid eating and that it depends on the area being scanned. My appointment is not until 1 PM during my annual visit.
What were you instructed to do?

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@007hafid

Sir you may have experience so I would like to ask you. If I give my liver to patient can I live a healthy life after liver donation. Or there are thing that can affect my my life in future thank you

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@007hafid, I can understand your interest about your future health after a living liver donation. You are absolutely correct to seek answers because the decision to become a living donor requires time and consideration. Before making a decision you need to know what it involves.

Most living liver donors are related to the recipient, During the living liver donor surgery the surgeon removes part of your liver and places it into the recipient after their liver is removed. It ususlly takes several weeks to several months for the liver to recover and return to normal size. During that time you will be limited on your physical activities.There are risks and you will need to be screened and tested to see if you can be a donor.

Do you have a loved one or a relative who needs a liver transplant? Does he/she qualify for a living donor?

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Sir you may have experience so I would like to ask you. If I give my liver to patient can I live a healthy life after liver donation. Or there are thing that can affect my my life in future thank you

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Thank you for your response. Where did you have your transplantseen done and if I can ask reason.i have had one bit some issues with sinusoidal dilitatation with donor liver they didn't know about during procurement process. Didn't think it would matter but deleted portal hypertension. It is managed well and I fee good. They say liver function remains stable eith this but if hypertension starts causing havoc, I'm curious if second transplant option. One doc said he's never heard of that, which i was a bit dumbfounded by

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I have had 2 liver transplants over 24 years now. If you want to discuss something then add your questions. There are many posts and it's getting to big to even try and follow.

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I love traveling. Did alot in traveling in the states with my daughter and mom awhile back. My mom passed couple of years back. My daughter and I started back traveling recently. We went to Italy last year for a wonderful trip. Fist time to Europe for her. She lived Europe so we just booked Amsterdam, Paris and London this June. We have been to Mexico a few times. I rented a place in isla mujeres this past winter for about 6 weeks. Have family there and have stayed with them for several of my trips there but this year stayed longer and got my own place. So many wonderful places hear also. I'm glad you are enjoying your gift and doing well.

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@mkhogan

Thank you for your response. I have been enjoying connect. I've learned so many things and it has definitely opened up options to me for meds and treatments doctors don't always talk about. Give me something to have in my bag, do yo speak when I talk w doctors. Sometimes frustration is doctors don't seem to bring up all options and nice for me to have questions I can bring yo them. Especially since you sometimes onlysee them once yearly. I am doing good. I have some portal hypertension even with new liver but it's controlled. Feel good every day and active and traveling lots. I have much to br grateful for

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@mkhogan, You have made my day! In am grinning-to-ear upon hearing that you are feeling good and even traveling again! As a transplant recipient, I am well aware of the benefits that you have received by following Connect. I wish that Mayo Connect had been available when I was going thru the process 15 yearsago!

mkl, I am back to traveling, too, since trasplant. My husband and I like to visit national parks for the scenery and hiking. What kind of travel do you like?

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@rosemarya

@mkhogan - Greetings today from a rainy central Kentucky! I want to say that I totally agree with your assessment that it would be awesome if more became aware of the benefits connecting with others.
I received my transplant in 2009, before Mayo Connect existed, and like you, I discovered it during one of my own on-line searches since there were no support groups in my area. I have enjoyed being a part of the conversations on Connect for over 10 years, and have proudly watched it grow as technology has become more available to the world. When in Rochester during my annual appointment, I have seen Mayo Connect Brochures at information desks and in the waiting areas, including some in transplant areas. Due to space availability and multitude of topic specific brochures, these are not placed everywhere. Have you seen the kiosks in the main lobby area? Mayo Connect is on it! And more recently is on the Mayo Clinic Patient portal. I think a brochure might be included in the take-home information, too.

During my time on Connect, I have been blessed to meet and interact with organ transplant patients from all over the world. I like to think of all us sitting around a kitchen table with cup of coffee or tea and chatting while getting and receiving support from each other. So, @mkhogan, I am inviting you to pour a cup of coffee or tea and join us. What is going on with you and your precious liver? What is something that you learned on Connect that is most helpful for you? Any updates you would like to share since your most recent comments?

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Thank you for your response. I have been enjoying connect. I've learned so many things and it has definitely opened up options to me for meds and treatments doctors don't always talk about. Give me something to have in my bag, do yo speak when I talk w doctors. Sometimes frustration is doctors don't seem to bring up all options and nice for me to have questions I can bring yo them. Especially since you sometimes onlysee them once yearly. I am doing good. I have some portal hypertension even with new liver but it's controlled. Feel good every day and active and traveling lots. I have much to br grateful for

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