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How, when, where do you start the liver transplant process?

Posted by shacquie @shacquie, Mar 21 8:09pm

Hi. My mom was admitted to the er and they said she has high ammonia levels, sent us home with lactulose. The soonest appointment to see a gastroentologest is in 15 more days. Has anyone heard of this?

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stolson1 | @stolson1 | Mar 27 2:47am

I live in MN and was referred to the University of Minnesota . Today is my 7 year anniversary since my transplant. My diagnosis was Alpha one. I did have fluid removals twice a week for quite a few months but once I was on the list I was only on it for seven weeks. I would say it’s so much about the Dr I cannot say enough good things about him. Best wishes too you -

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parrot53 | @parrot53 | Mar 27 6:50am
In reply to @shacquie "@gently I live in a small town in New Mexico. Shes been to every emergency room..." + (show)
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@gently I live in a small town in New Mexico. Shes been to every emergency room here and they never knew what it was until recently. Its so hard to get an appointment with a specialist here end we dont hardly have any. They didnt tell us the levels or anything at all. Just if it gets worse to come back.

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@shacquie Good Day,
I used the Mayo website to fill out a request for a liver consult when I was diagnosed with cirrhosis. It did take a couple of months, but I was tested for transplant and cared for by Mayo in Jacksonville. You are closer to the Arizona Mayo. You could fill out a request for an appointment there. They will ask a lot of questions and you will need to provide medical reports of your condition but age was not a problem.
Here is a link to get started. Wishing you the very best.
https://www.mayoclinic.org/appointments/intro

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shacquie | @shacquie | Mar 27 10:27pm
In reply to @woodstock1959 "@shacquie I know that in Texas you have to wait for enrollment period November thru January..." + (show)
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@shacquie I know that in Texas you have to wait for enrollment period November thru January is our enrollment period. Not sure how your State works. Can she get on disability? That might help

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@woodstock1959 I think she does have disability. I appreciate your ideas, if anything else comes to mind, feel free to tell me.

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shacquie | @shacquie | Mar 27 10:31pm
In reply to @pgruetz "@shacquie Hang tight and get to the right doctor my first one said I will never..." + (show)
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@shacquie
Hang tight and get to the right doctor my first one said I will never get a liver and go home and basically die my daughter was with me and equally appalled so a few days later something hit me so bad and called my girlfriend that lives in Washington state and said I’ll fly you down and you need me to take me to the hospital in Santa Barbara the next morning she picked me up at that point I couldn’t drive and was admitted immediately and was given 5 days to live at that point I realized this is serious. After many months in and out of ICU 7 months later I received my new liver. The whole time my acites was really bad. I wouldn’t put it off and hear the right thing from the right doctor they’re not all the same. 3 years later today I can actually do a freestyle stroke in the pool again, I always look at any gain is a big gain so get going on the road to recovery

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@pgruetz thats soo scary, it makes my stomach turn. I couldn't be happier to hear how everything fell into place. It reminds me to keep pushing and keep looking. Thank you for your story. Being in the right hands is my main goal and being able to find a place that will be that good level and still accept the insurance.

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shacquie | @shacquie | Mar 27 10:42pm
In reply to @stolson1 "I live in MN and was referred to the University of Minnesota . Today is my..." + (show)
Profile picture for stolson1 @stolson1

I live in MN and was referred to the University of Minnesota . Today is my 7 year anniversary since my transplant. My diagnosis was Alpha one. I did have fluid removals twice a week for quite a few months but once I was on the list I was only on it for seven weeks. I would say it’s so much about the Dr I cannot say enough good things about him. Best wishes too you -

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@stolson1 thats very inspiring to me. I hope everyone finds the same success that you have. I didnt realize finding this platform would bring me soo many promising stories and such support. Thank you for sharing your story and happiness with me.

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shacquie | @shacquie | Mar 27 10:48pm
In reply to @parrot53 "@shacquie Good Day, I used the Mayo website to fill out a request for a liver..." + (show)
Profile picture for parrot53 @parrot53

@shacquie Good Day,
I used the Mayo website to fill out a request for a liver consult when I was diagnosed with cirrhosis. It did take a couple of months, but I was tested for transplant and cared for by Mayo in Jacksonville. You are closer to the Arizona Mayo. You could fill out a request for an appointment there. They will ask a lot of questions and you will need to provide medical reports of your condition but age was not a problem.
Here is a link to get started. Wishing you the very best.
https://www.mayoclinic.org/appointments/intro

Jump to this post

@parrot53 thank you so much for the information! Im getting my feet on the ground, figuring out where to start, learing the process, the options. This is very helpful to me.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 1 11:38am

@shacquie, I'm thinking about you and your mom. I know that this has been pretty hard on you, and as a mother of 2 sons, I must say that you are a good son.
How is your mom getting along? Has she had her appointment with the GI yet?

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shacquie | @shacquie | 6 days ago

Hello. Sorry for the late response. Yes, I took her to the hepatologist in tucson. They want to keep her on lactulose and monitor her every 6 months. They said she has fatty live and to lose 7 pounds but that shes fine. I hope all is well. This has been life changing. Im so thankful for this support group.

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