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New Territory: CM-AVM2 and living donor liver transplant

Posted by jimbo9119 @jimbo9119, Feb 20, 2023

Hello. I'm new to this group as the journey I am on with my husband is very overwhelming, to say the least . This is a journey that began in September of 2021 and continues. He was ultimately diagnosed with a very new condition, CM-AVM2, which was discovered after genetic testing. Typically this condition affects the spine or brain. Luckily this is not the case with my husband. It is affecting his liver and we are awaiting appointments in MN for evaluation for a living donor liver transplant. It has all his doctors baffled. Just overwhelmed at times.

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

Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 20, 2023

@jimbo9119, I can imagine this is very overwhelming. To be diagnosed with or caring for someone a serious illness is tough and we often rely on our doctors and clinical team to help guide us. But when the illness also has the doctors baffled, you must feel like a sailboat without a rudder.

To help connect you with others, I've expanded the title of this discussion and also added it to the Transplants support group here: https://connect.mayoclinic.org/group/transplants/

Jimbo, are you going to Mayo Clinic for transplant evaluation? Does your husband have a living donor?

REPLY
1 reply
jimbo9119 | @jimbo9119 | Feb 20, 2023
In reply to @colleenyoung "@jimbo9119, I can imagine this is very overwhelming. To be diagnosed with or caring for someone..." + (show)
@colleenyoung

@jimbo9119, I can imagine this is very overwhelming. To be diagnosed with or caring for someone a serious illness is tough and we often rely on our doctors and clinical team to help guide us. But when the illness also has the doctors baffled, you must feel like a sailboat without a rudder.

To help connect you with others, I've expanded the title of this discussion and also added it to the Transplants support group here: https://connect.mayoclinic.org/group/transplants/

Jimbo, are you going to Mayo Clinic for transplant evaluation? Does your husband have a living donor?

Jump to this post

Thank you for expanding and sharing this for me. Yes, we will be going to Mayo Clinic in Rochester as soon as they can schedule all the appointments for us. We do have offers from two family members to be donors but that's as far as it has gone so far. We're essentially taking one day at a time so as not to make this what defines our everyday life. Hopefully that day will come soon enough.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 21, 2023
In reply to @jimbo9119 "Thank you for expanding and sharing this for me. Yes, we will be going to Mayo..." + (show)
@jimbo9119

Thank you for expanding and sharing this for me. Yes, we will be going to Mayo Clinic in Rochester as soon as they can schedule all the appointments for us. We do have offers from two family members to be donors but that's as far as it has gone so far. We're essentially taking one day at a time so as not to make this what defines our everyday life. Hopefully that day will come soon enough.

Jump to this post

@jimbo9119, Welcome to Connect.
I understand how overwhelmed you must be feeling. I had my transplant at Mayo Rochester in 2009. My husband was my caregiver, and since we live at a distance we stayed in Rochester. I can assure you that you will receive the best possible care and treatment at Mayo. The needs of the patient comes first IS evident the moment you enter!

I hope that you will soon get your appointment and a schedule for your husband's evaluation.
Jimbo, What are some questions that you have regarding your upcoming Rochester visit? What would you like to know as you prepare?

REPLY
1 reply
jimbo9119 | @jimbo9119 | Feb 21, 2023
In reply to @rosemarya "@jimbo9119, Welcome to Connect. I understand how overwhelmed you must be feeling. I had my transplant..." + (show)
@rosemarya

@jimbo9119, Welcome to Connect.
I understand how overwhelmed you must be feeling. I had my transplant at Mayo Rochester in 2009. My husband was my caregiver, and since we live at a distance we stayed in Rochester. I can assure you that you will receive the best possible care and treatment at Mayo. The needs of the patient comes first IS evident the moment you enter!

I hope that you will soon get your appointment and a schedule for your husband's evaluation.
Jimbo, What are some questions that you have regarding your upcoming Rochester visit? What would you like to know as you prepare?

Jump to this post

Thank you for your reassuring words. We have had nothing but good experiences every time we have visited Mayo Clinic since this journey began. We really feel that we have made the right choice. We will also be staying in Rochester since we live in the Chicago suburbs so it is a drive.

No questions at this time but glad to know there is someplace I go to look for answers and support.

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