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Mentor

This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

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

Kristin Eggebraaten | @keggebraaten | Jan 30, 2018
In reply to @rose999 "Thank you. I just submitted my request on line with no preference. I needed that little..." + (show)
@rose999

Thank you. I just submitted my request on line with no preference. I needed that little push. I was going to put it off but I know that doesn’t help anything.

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Hi @jodeej - Some calendars may not be built for the entire month of April yet, but should be done very soon. We typically book 12 weeks at a time, so those should be available through the end of April by February 1 or sometime soon after. Let me know if I can help!

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jodeej | @jodeej | Jan 30, 2018
In reply to @rose999 "Thank you. I just submitted my request on line with no preference. I needed that little..." + (show)
@rose999

Thank you. I just submitted my request on line with no preference. I needed that little push. I was going to put it off but I know that doesn’t help anything.

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Thank you! I will!

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 30, 2018
In reply to @rose999 "Thank you. I just submitted my request on line with no preference. I needed that little..." + (show)
@rose999

Thank you. I just submitted my request on line with no preference. I needed that little push. I was going to put it off but I know that doesn’t help anything.

Jump to this post

@rose999, Also be sure to read the previous posts about scheduling appointments. @keggebraaten has shared some helpful information.

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senior999 | @senior999 | Jan 30, 2018
In reply to @rose999 "Thank you. I just submitted my request on line with no preference. I needed that little..." + (show)
@rose999

Thank you. I just submitted my request on line with no preference. I needed that little push. I was going to put it off but I know that doesn’t help anything.

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Mayo is going to get my records before we schedule. Everyone has been so helpful. Thank you.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 30, 2018
In reply to @rose999 "My playelet count went from 130 to 105 for about 8 yes and in last year..." + (show)
@rose999

My playelet count went from 130 to 105 for about 8 yes and in last year is at 70. The bruising is awful. I also was told ITP. I had the bone marrow test and a lot of others. Iron level is high but WBCand RBC alittle low. The CT scan was the first to show cirrhosis but they kept saying liver biopsy was fine. It was a specialist that discovered it was done on my left side when ct scan showed problems in right. There are even more family members just diagnosed with liver problems that I skipped in my note. You don’t know who to trust doctor wise. I am going with Rosemary’s recommendation to let Mayo decide. I have been through 3 sleep studies-I told them no more. You and I have a lot of the same history.

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@contentandwell, I hope your PT's mother is doing okay. That was quite a fright for her.
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 30, 2018
In reply to @rose999 "Thank you. I just submitted my request on line with no preference. I needed that little..." + (show)
@rose999

Thank you. I just submitted my request on line with no preference. I needed that little push. I was going to put it off but I know that doesn’t help anything.

Jump to this post

@senior999, Looks like you just took a big step forward!
Hugs,
Rosemary

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JK | @contentandwell | Jan 30, 2018
In reply to @rose999 "My playelet count went from 130 to 105 for about 8 yes and in last year..." + (show)
@rose999

My playelet count went from 130 to 105 for about 8 yes and in last year is at 70. The bruising is awful. I also was told ITP. I had the bone marrow test and a lot of others. Iron level is high but WBCand RBC alittle low. The CT scan was the first to show cirrhosis but they kept saying liver biopsy was fine. It was a specialist that discovered it was done on my left side when ct scan showed problems in right. There are even more family members just diagnosed with liver problems that I skipped in my note. You don’t know who to trust doctor wise. I am going with Rosemary’s recommendation to let Mayo decide. I have been through 3 sleep studies-I told them no more. You and I have a lot of the same history.

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@rosemarya it really was a fright, for the whole family. She initially tried to make an appointment at MGH but would have had to wait a while and she didn't want to wait so she called Dartmouth Hitchcock. It turned out that was a good thing. I suspect if she had realized the seriousness of her situation that MGH would have managed to accommodate her. I believe she will be coming home tomorrow.
My PT and I have a good relationship, this is my third time working with him, so we do tend to discuss family, etc. He's a pretty good guy.
JK

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italygirl330 | @italygirl330 | Feb 13, 2018
In reply to @rose999 "I have posted before but have a few questions. I am 68 yrs old diagnosed with..." + (show)
@rose999

I have posted before but have a few questions. I am 68 yrs old diagnosed with cirrhosis but my doctors believe is is compensated. My doctor does believe at some point I will need a transplant. I am in relatively good health. I realize my age may rule that out in the future. I have a friend that would donate but he is 64 in excellent health-runs 3 miles a day and bikes about the same. Is there any place that age is not THE deciding factor? I am thinking of coming to Mayo for a second opinion—Florida is more enticing weatherwise so are all locations equal?

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My platelet count also is down. Has been for about 1 year. Just diagnosed with Cirrhosis.

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italygirl330 | @italygirl330 | Feb 13, 2018

I just was diagnosed with cirrhosis.
My tests had showed prior elevated enzymes. Not to bad. The biopsy I had gave me stage 4/4. Only symptom I have is fatigue with low platelet reading.
I had a fatty liver. For many years. And just kept an eye on it. With my type 2 diabetes.
I am in the process of referrals.
Scared I will be told I do not have a good prognosis. I am almost 48. I have many years to live and I have fun. So Scared.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 13, 2018

@italygirl330, I would like to welcome you to Mayo Connect. I see that you have joined today. We are happy to have you be part of our conversation. On Connect, we are also patients, and we will do our best to support each other and answer questions based on our own experiences. We are not medical providers and cannot diagnose, but we can direct you to reliable medical resources. It is perfectly normal to be scared and fearful about prognosis. I want to urge you to focus on whatever positive steps might be available to you to provide the best possible outcome
I want to share this link to Mayo Clinic's educational information about fatty liver disease.
https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567

I would like to introduce you to @contentandwell who also had fatty liver disease.

What kind of referrals are you are you considering? and When?

I look forward to learning more about your condition, and hopefully being able to provide some helpful input.
Rosemary

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