Lost Son's Updates on Dad with Hep C, Part III

Awesome, LS that is great news! So happy for you all :) So nice to hear good news these past days, onward and upward kiddo!

Hugs,
Mae

Thanks Mae

I was reading Scared and Sads thread and I feel the same. It is amazing how one can go through the ups and downs with others. Good, Bad, uncertain hopes and prayers never end. I keep others in my mind and prayers.

Worried Daughter, forgot to answer but as for the jaundice, yes my dad hasn't changed too much there. Not so much the skin anymore as it has gotten better but his eyes have a yellow tint to them.

LS WTG!! such wonderful news.. yes one step.. but an important step!! good news .. so nice to hear!!

Sandia

Thanks all, despite the good news he isn't doing too well. They doubled both of his diuretics and not only is the swelling going away but it is getting worse. His legs are very noticeably much more swollen. Today he went to his treatment class and my mom says he barely made it inside and to the bed because he was so exhausted and his feet hurt.

She got him something to eat (In bed which is where he eats when he is very tired) They also called him yesterday asking him to go get more labs. I was unaware of this and curious as to the purpose of it since he just had one a week ago? I guess I will call Monday and find out. My dad didn't even ask or at least he claims not to know the purpose of it.

I went through what your dad is experiencing a 10 days prior to my transplant. My doc hospitalized me for a week, gave me daily IV lasix, albumin and limited me to half a liter of fluid a day. I lost 29 pounds of fluid, and felt much better, not that I was in good shape, but at least I could walk and bend my legs. Three days after exiting the hospital, I got the "call." Let's hope your dad has equally good fortune.

Thinking of you and your dad lostson. Your in my prayers.

Glad that you got some good news! What MELD score do they typically transplant patients at your dad's transplant center??? It seems that a meld of 20 is pretty high, which probably means he is moving higher on the list. (which can be a positive thing).

Actually I was just reading and it appears that a MELD score of 20 is the national average for a transplant and the average wait time is 12-36 months after being listed.

When I look at it that way it I wish things were different but I am sure he is low on the list with a 20. Maybe a dumb question but wouldn't someone in the mid to high 30's basically be on their death bed? I can't imagine anyone living much longer at that stage.

Is there any way to step up the required documented hours?

Mae,

At this point if he goes to all the classes and doesn't miss. He should be done by mid August. I am not sure my dad is in dire need to get them done sooner. I guess that shows how naive and un-experienced I am with this. In my view I am hoping my dad will be waiting Looooong after he finishes before he needs a transplant.

WD,

I have contemplated the double listing concept but my dad is not willing to go anywhere else. I am blessed he even agreed to be willing and has an opened mind here. He feels that we are in a good place and if it is meant to be it will happen here.

Ziff,

I know what you mean. My dad is "stable" at a 20 but to me he is not in the best shape. I am really worrying about his fluid retention. He is really getting bloated and feels uncomfortable. I don't know if I should wait the 2 weeks before his visit or if it is a cause for concern.

Ziff,

Luckily right now, my dad is able to attend all his meetings. He is walking around and doing all his own daily functions. Up until 2 weeks ago he was living "a normal life" then he started the fluid build up. His legs look like balloons. I emailed the doctor tonight and hope to hear something tomorrow.

Good news he is keeping up with his program.

Please remember that getting through the 6 months is important and with the meds, no alcohol, and healthy life style changes one may have Ziff's experience and sail along just find for YEARS.

BUT, like David, one can be sailing along and have a crisis....David had several brain bleeds that were life threatening and he went down hill suddenly...and was all prepped for the transplant after some YEARS of waiting and zip zip zip had his TP and has done very well.

My Mike was so very sick, MELD 25 or 26 when he arrived at a TP center one month sober and at death's door. The meds and sobriety quickly stabilized him and dropped his MELD to mid teens, I think 17 for a while. But while he was doing his 6 months of AA, his MELD started creeping up again. By the time the 6 months were finished, they had found a tumor in the liver and they were fighting against time and the Milan rules (< 5cm.). His first AA meeting was November 1st, 2010 though he had been sober since September 27th (how those dates stick in my mind so well). His TP was May 1, 2011...and he was MELD 25 again. In the nick of time.

So one never knows...Mike didn't have YEARS left. Recommendation: get those meetings behind him, have whatever quality of life he can have, and keep an eagle eye out for any emergency.

Hugs,
ML