My mother's reaction

Hi guys,
I recently returned from visiting/telling my mother abt my liver cancer. U were all correct! Her attitude was fabulous. She will now b another strong and positive advocate for me. She also made it very clear how upset she would have been if I had not told her. I'm going up to unc Monday for a chest ct scan and talk to the surgeon. I have questions so will b armed with more answers.

But, until then I want 2 ask u all something:

What r the predictions post TP, for how long one can live? I know that is very hypothetical, but would it be living out ur natural life? If one did well without major setbacks, is there a rule of thumb that is used to predict? Of course I know no one knows what the future holds, but I'd like to know what the expectations r.
Ziff, u made me laugh with ur comment abt dancing! I know exactly what u mean. I have not danced in over 30 yrs for same reason. I thought i was a fabulous dancer and would dance for hrs at a time. Good god!
And, it was a very good feeling to wake up in the morning and KNOW what I did last night and where my car was:))

Second night without sleep grrrr! I'll be a mess again tomorrow. Sleepy time tea really helps, but it gives me leg cramps. If anyone else gets leg cramps unc told me a very strange fix. I did it the other night and it worked!

Thanks all,
Zoarie

Post Edited By Moderator (hep93) : 8/25/2013 11:28:04 AM (GMT-6)

Zo, Glad to hear your mom's on board and doing well. I can't speak personally to what you can or can't expect post transplant but David obviously felt well enough to go back to work full time.

Yeah, I don't think you'll see me on Souuuuul Traaaiiin!!!! Anytime soon. The wife and kids just kinda roll their eyes when I get started doing my thing. The dog even looks thoroughly disgusted at me.


Ziff

Post Edited By Moderator (hep93) : 8/25/2013 11:30:15 AM (GMT-6)

Zoarie,
I am on a transplant forum. There are people that have had transplants and have lived a very long time. As time has gone by, the meds and treatments have improved. I was told that my transplant is good for at least 25 years. That would take me to 84. Of course, other medical problems, or getting hit by a bus could alter that. It's not worth thinking about. I get up every day and am happy to see the sun. You can't go by how long, but how good life is.

Zoarie, I think David gave you a pear of wisdom. Quality of life is always better than quantity. When someone is young and has young children or is looking forward to having children, then longevity is important. But in the case of liver disease, you can only be grateful for each day on this side of the earth, lived well.

I'm glad to hear that your mom will be supportive. But I had no doubt that she would. I had an overnight visit with my grown daughter Fri. night. I hadn't seen her in over a year due to distance. But she got a true picture of my SOB and fatigue, and was much more understanding and helpful. That visit was good for both of us.

I've forgotten if you have hep C, but if you do then the key is to get good treatment and achieve SVR. I think you probably do have HCV, as that's what causes HCC. And right now, that's the most important thing...to take care of that.

I will tell you that each transplant facility keeps stats on longevity post TP. Even before I was evaluated for TP at Mayo, I was given a sheet with rates of longevity at their facility at 1 year, 5 years, etc. They had good percentages...much better than most. So ask your TP center about this. It will be 2 yrs. in Oct. since my TP. I've had lots of bumps along the way, mostly attributed to hep C, but I'm still here. Because I am older and have not yet been treated for HCV (the goal, once other issues are dealt with), I am hoping to make it another 10 yrs. But I am older and have 3 great-grands, 1 1/2 & 2 1/2. So I don't expect to see them grow up, but had I not had the transplant, I wouldn't have even known the youngest was born. I haven't even seen 2 of them, but am hoping for a visit next Thurs. I do have lots of pics of all of them.

Achieving SVR or making a turnaround from alcoholic hepatitis or taking meds faithfully for fatty liver disease and autoimmune hep, all make living longer a reality.

Big hugs,
Connie

Hugs,
Connie