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senior999
@senior999

Posts: 9
Joined: Sep 25, 2017

Multiple Family Members with Liver Cr

Posted by @senior999, Sep 25, 2017

We knew there were multiple forms of MD and cancer in the family plus possible Lynch Syndrome but now we are facing liver cir. Two years ago my son had first physical at 40 yrs old, blood work had high metal levels, less than two yrs later a liver transplant. Non-alcoholic. My niece had her gall bladder out at 40 yrs old afterwards diagnosed liver cir-being followed. Non-drinker. I had a cat scan for another concern two weeks ago-liver cir. I was referred to my son’s transplant doc-liver cir. Non-drinker. My brother who has FSMD is in hosp for infection and loss of all muscles–bonus diag liver cir. Teenage generation showing some problems. Geneticist didn’t have the answers. My son’s liver didn’t provide any clues. The guess is auto-immune related. Anyone have a similar family history?

REPLY

@senior999, Welcome to Mayo Connect.
I am happy to have you join our discussion on transplants. I am a liver/kidney recipient, and quite honestly, your question is way beyond my own personal experience. I do hope that someone with a similar family history will see this and that they will reply to you.

I do not know where you are located, or what are you/your family circumstances, but I would encourage you to consider seeking help at one of the Mayo Clinic Campuses. I am attaching the link to Mayo Liver Transplant Department. The Mayo doctors function as a team and include experts from all specialties needed to arrive at a conclusion. You can read and review for your self about them, and there is contact information, too.

http://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818

Did your current providers give you any possible direction to turn to? What is planned for you as a result of your cat scan two weeks ago?

Rosemary

@rosemarya

@senior999, Welcome to Mayo Connect.
I am happy to have you join our discussion on transplants. I am a liver/kidney recipient, and quite honestly, your question is way beyond my own personal experience. I do hope that someone with a similar family history will see this and that they will reply to you.

I do not know where you are located, or what are you/your family circumstances, but I would encourage you to consider seeking help at one of the Mayo Clinic Campuses. I am attaching the link to Mayo Liver Transplant Department. The Mayo doctors function as a team and include experts from all specialties needed to arrive at a conclusion. You can read and review for your self about them, and there is contact information, too.

http://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818

Did your current providers give you any possible direction to turn to? What is planned for you as a result of your cat scan two weeks ago?

Rosemary

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I am outside St. Louis. My local GI doctors are into assembly line colonoscopies. You see them there never in office. I see them about every two years because of Lynch. Two years ago I mentioned a problem swallowing. Since then I have had an EGD every six months because of strictures plus GERD Grade C. Also I insisted on liver biopsy which showed beginning of cir but they told me it was nothing to worry about. My gyn doctor referred me to a specialist gyn who had the Cat scan done for another reason. He told me to get an appt with my son’s GI doctor at Barnes who is on the transplant team. I know my son’s records were sent to Mayo for a consult but it was before we started getting more diagnoses. I am retired but I have a work plan insurance that would pay for travel, lodging, and treatment at Mayo after a referral. St Louis University geneticists were looking at the various cancer history in family but said that the science wasn’t there yet. I asked them if DUX2gene may have mutated—various MDs, neural tube defects, etc. i researched my mother’s family medical history back to 1600’s and see a lot of various diseases related to this gene—I am not a medical professional but apparently I am a tad OCD with too much time on my hands. Anyhow back to doctor-I have an appt with my son’s doctor on Nov 13. It is very hard to get into a true specialist and this was first opening. About three years ago my platelet count went to 70 and stays in the 70’s. I have the cough, the intense itching, everyday stomach pain, mouth sores, bruising that is unbelieving, and odd purple rashes. Yet I feel healthy overall. Sorry it is so long but I needed to vent.

@rosemarya

@senior999, Welcome to Mayo Connect.
I am happy to have you join our discussion on transplants. I am a liver/kidney recipient, and quite honestly, your question is way beyond my own personal experience. I do hope that someone with a similar family history will see this and that they will reply to you.

I do not know where you are located, or what are you/your family circumstances, but I would encourage you to consider seeking help at one of the Mayo Clinic Campuses. I am attaching the link to Mayo Liver Transplant Department. The Mayo doctors function as a team and include experts from all specialties needed to arrive at a conclusion. You can read and review for your self about them, and there is contact information, too.

http://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818

Did your current providers give you any possible direction to turn to? What is planned for you as a result of your cat scan two weeks ago?

Rosemary

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@senior999, you certainly have a lot going on there. From my perspective, I believe it would be worthwhile for you to contact Mayo to get their input. They should be able to advise you about the ‘referral’ issue. You have said that you have the time, the insurance, and the medical concern – so why not make contact – for the peace of mind as well as potential diagnosis/treatment.

I live almost 800 miles from Rochester, and make the trip with my husband annually. Rochester is indeed a beautiful and patient friendly city.
And I’m not sure of the difference between OCD and being proactive about our health! It is your body; it is your life.
I’m sorry that you are feeling poorly. Do you have a PCP to monitor you while waiting for the Nov. 13 appointment?
There is a lotion that worked well for me with the intense itching: Sarna Lotion -over the counter.
Rosemary

Thanks. I will definitely try the lotion.

My brother is in the hosp for several reasons. While there he was diagnosed with liver cir. They are sending him home on hospice expecting him to only make it two weeks. I am being asked it any of my doctors need a tissue sample after he passes. I haven’t made an appt with Mayo yet and I am in the midst of waiting for an appt in Nov with a specialist at Barnes. Does anyone know if I can pay to get a sample stored in case it is needed?

@senior999

My brother is in the hosp for several reasons. While there he was diagnosed with liver cir. They are sending him home on hospice expecting him to only make it two weeks. I am being asked it any of my doctors need a tissue sample after he passes. I haven’t made an appt with Mayo yet and I am in the midst of waiting for an appt in Nov with a specialist at Barnes. Does anyone know if I can pay to get a sample stored in case it is needed?

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@senior999, I am sorry to hear about your dear brother’s failing condition. I pray, “May the peace of your God surround both you and your brother.”
I do not know anything about the question that you have asked about the tissue sample/storage? If I were you., I think I would begin by asking his doctor for information about that and how to proceed.
Hugs,
Rosemary

@senior999

My brother is in the hosp for several reasons. While there he was diagnosed with liver cir. They are sending him home on hospice expecting him to only make it two weeks. I am being asked it any of my doctors need a tissue sample after he passes. I haven’t made an appt with Mayo yet and I am in the midst of waiting for an appt in Nov with a specialist at Barnes. Does anyone know if I can pay to get a sample stored in case it is needed?

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My brother died less than a week after diagnosis.  Death cause is cir of liver.  I was told by Wash U to ask for autopsy and for tissue from liver on slides to be stored for several years.  One of the doctors is going to come to the local hosp to view them.  No one knows cause but they agree it is very aggressive.  

Rose Kasper

@senior999

My brother is in the hosp for several reasons. While there he was diagnosed with liver cir. They are sending him home on hospice expecting him to only make it two weeks. I am being asked it any of my doctors need a tissue sample after he passes. I haven’t made an appt with Mayo yet and I am in the midst of waiting for an appt in Nov with a specialist at Barnes. Does anyone know if I can pay to get a sample stored in case it is needed?

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@senior999 – Rose, I send you my sincere condolences.

For your sake, as well as the sake of the rest of your family, I hope that you are able to learn something about this condition.
Rosemary

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