Liver Transplant Patient: Hi I am Kathy. I am a... - Liver4Life

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Liver Transplant Patient

KLINUS profile image
6 Replies

Hi

I am Kathy. I am a liver transplant patient. I had transplant 3 years as of July 2015. I had HepC since 1974 but did not know until 2014. By than I had only discovered this as a result of going to Dr. because I’d been home with bronchitis and needed a doctors note. That began the tests which uncovered my hepc. I was by than 4 stage cirrhosis and 2 cancerous tumers.

Soooo my reason here is because I went for a fibroscan today and the scan showed 8.2. The doctor said I should be a 7.0 and said my transplant doctor would get the results. I guess I have to wait until next week now so thought I’d ask.

Thank you for any information

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KLINUS
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AyrshireK profile image
AyrshireK

Just wondering, you don't mention if your Hep C was treated and eradicated. A Fibroscan score of 8.2 with Hep C or recurrence of Hep C post transplant would indicated some fibrosity beginning in the liver (F1-F2 stage).

KLINUS profile image
KLINUS in reply to AyrshireK

Yes I was cured of the hepc before the transplant. I received a liver of a 21 year old, (Sweet Jesus I grieve for her family as I lost a son a few years back) so to see this 8.2 today has me concerned.

AyrshireK profile image
AyrshireK in reply to KLINUS

Fibrosis is generally regarded as reversible so providing they can identify the cause then you should be able to turn this around. Perhaps diet is coming into play post transplant etc. I wouldn't worry too much just now.

Look after your liver, healthy diet, exercise etc.

Katie

KLINUS profile image
KLINUS in reply to AyrshireK

Thank you very much for all this info. May you be Blessed❤️

L4LKelvin profile image
L4LKelvin

Dear Kathy,

I collapsed in February 2010 in Bali with what turned out to be Hep C. I didn't know I had it, and on reflection the only way I could have caught it was around 1974 - 76 while travelling overland to India, where during those 2 years I donated blood in Persia, Afghanistan and Pakistan and had back street dentistry in Delhi.

Like you I was badly cirrhotic when diagnosed and between February 2010 and April 2012 I failed on double and triple Hep C therapy before carcinomas were found. So I went through 2 liver transplants within 3 days at Birmingham QEH in December 2012 (first one failed) while still having Hep C.

This pernicious virus (used to living in the equivalent of a derelict London squat) now entered my new liver (the equivalent of a Mayfair penthouse) and trashed the place. During this journey over 34 months from diagnosis to transplant, my Fibroscan reading at worst was 25!

Needless to say, I haven't touched alcohol since the day I collapsed, and never will again, and through strict attention to diet by cutting out all meat and dairy, plus anything containing refined sugar like cakes, biscuits, sweets and chocolates, and cutting out processed foods as much as possible, I replaced all that junk with as much fresh fruit and vegetables as I could eat and juicing at least once a day (sometimes two or three times).

This reversed my liver decline enough to be considered a suitable candidate for a Harvoni trial in May 2014 and I finally cleared the virus in 6 months.

I have continued to juice daily and maintain my healthy diet, and my last Fibroscan reading in July 2017 had come down to 8.1, a reduction of 17 points!

So although our current Fibroscan scores are similar, I consider mine to be a major positive result, and hope to have a score of below 7 by my next follow up clinic in July, which in my view would be yet another miracle. Now that our Hep C has gone, our clinicians have done their job, now it's down to us.

You are also blessed by knowing about your donor, I tried to get in touch with both donor families through the liver coordinator's at Birmingham hospital, but neither family wanted contact, which although perfectly understandable, has left a gap in my recovery journey.

I now run the Helpline for the liver charity LIVER4LIFE, and if you want to have a chat about liver health, or diet and juicing, please call the Helpline FREE on 0800 074 3494.

I wish you all the best Kathy on your own recovery journey back to the best of health.

Kelvin Marshall

KLINUS profile image
KLINUS in reply to L4LKelvin

Kelvin,

Thank you for your message. I felt the presence of the Lord as I was reading it. I know I would not be sitting here today if I had not went to the doctor that day because of bronchitis as I wasn’t one to go to Doctors. I only went because I needed to have a doctors note for work.

As it turned out I selected a doctor whom was a man of Faith and encouraged me the entire year before I received the organ that saved me life for I did not have much time.

I do not know whom my donors family are but knew of the donors age from my Transplant Surgeon. I have not tried to contact them as my transplant was in July 2015.

I lost my only son a few years before my transplant. He was only 31. He had a head injury while in the Military. I know the grief that comes with the loss of a child, it is gut wrenching sorrow you never get over. I felt the donors family had unexpectedly lost their daughter and because of the anguish I know they are in I have not contacted them as yet. I was told when I do write them a letter it has to go through transplant to be given to the family.

I will keep you in my prayers as I am a fervent prayer warrior.

May the healing hands of God touch your life daily Kelvin.

Blessings,

Kathy

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