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Stage IV HCV Disease with Stage I Hepatoma 
Started by Shell92108
05 Nov 2013, 8:13 AM

I am approaching the second year of the roller coaster ride of awaiting a liver transplant in Southern California approximately 2,600+ nautical miles away from my family and everyone I know.  We're originally from the Northeast including New England and Washington DC areas, my husband up-state NY and my extended family British Canada (Vancouver), New Jersey and Connecticut.  I was originally diagnosed with biliary cirrhosis in Sept. 2006 and learned shortly thereafter that at age 9 I had contracted HEP C from a blood transfusion at Wiesbaden AFB from a Vietnam vet.  That was 1967.  I'm now in my 50s and my grandmother and her three sisters all died of hepatoma arising from biliary cirrhosis before age 50 so the genetics aren't positive for my longevity.  Any coping suggestions would be welcome.
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Reply by NatR
05 Nov 2013, 2:49 PM

Dear shell92108,

thank you you for joining the forum.  Thank you for sharing a bit about you, your family, your diagnosis.

you didn't mention if you have any children.  If you do, do they live near you?
sounds like most of your family is spread out across the country, and into canada - it seems that today that is the case, we all kind of live independently, and far from each other.

the gift of the Forum is that we can be miles apart in actual distance, but through the magic of technology, you and I can share thoughts and offer a listening ear, encouragement, and sometimes I may even come up with a good idea! ( that's my funny side coming out)

there is nothing funny  about the reality of our stories of sickness, loss and isolation.
you will find a circle of support here where different people with different skills will reply to you and offer help, and friendship.

You are younger than I, I am mid 60's.  i want to encourage you to keep writing, ask questions, (there are professionals on this website) also knowledgeable writers on this forum.

i think that surrounding yourself with good friends, your husband, leaning on the support, talking to us (strangers) when you really want to vent,  cry, let things out.  All those things help.

we all want every day to count, none of us know what awaits us today, next week, next year.
for me, keeping busy with things I love, crafts, friends, music, movies, that kind of thing - helps me to keep focussed on today, make a small plan for tomorrow, little steps, not trying to plan far ahead.

what I am trying to say is, live in each moment, there will be good days and I am sure bad.  You aren't going to be alone.  Real life and VIrtual Hospice forum members will keep you feeling connected and become a sort of routine, part of each day when you can check in, say how your day is going, etc.

for now, I just want to say you aren't alone, and you can type messages any hour of the day, so feel the friendship and support.

you will be in my thoughts today,
I will be watching for your notes;)
sending you a cyber hug - not the same as the real thing, but still sent with energy that is real.

NatR ;) 
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Reply by JennJilks
05 Nov 2013, 3:52 PM

I would echo my dear friend, Nat's, ideas.
Journaling has been proven a great way to allevieate stress.
Also, blogging. There are many parents who face the death of a young child who have been writing out what is happening. THis helps family and friends to check in when they are unable to visit, or do not want to annoy family with numerous phone calls.
My daughter's friend has a son, age 8, who has a palliative brain tumour. It is better for them when they talk to one another. We know this is true.

I would suggest you find counselling. If you are Stave IV, you have access in the US to services. Take advantage of them. It cannot hurt. It might help. As a patient advocate, I find talking with my clients most assists them.
Find new things to hope for.
Write your obituary. I find this helps my clients, as they realize the great things they have done. Many focus on mistakes, rather than successes, and this helps.
take care 
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Reply by eKIM
06 Nov 2013, 4:13 AM

Hi Shell

I am sorry to hear about your health challenge that you are facing.  I hope that you find support here at Virtual Hospice.

I wonder if you can elaborate on what you mean when you asked for "coping suggestions".  Are you looking for specific suggestions from people who are in a similar situation as yours?  Or were you looking for general techniques on coping with stress?  I am a hospice volunteer and I have a series of "coping" techniques that I use to prevent emotional burnout.  I could share these with you, if that is what you are seeking.  if not, that's ok.  I will follow your postings and send you my best wishes.  

- eKim
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Reply by moderator | modératrice
09 Nov 2013, 8:00 PM

Hi Shell,

How are you doing today?
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Reply by eKIM
12 Nov 2013, 2:14 AM

Hi Shell,

I submitted a posting entitled, Coping With Stress - One Person's Viewpoint in the "Reflections and Inspirations" section of V.H. Forum.  I don't know if is what you are looking for, but, I tried.  Let us know how you are doing.  - eKim


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