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

Hi all, so got dads results from yesterday. His Meld score went up a point.

His INR is still 1.8
Creatine which had gone down for the first time last month to 0.78 shot back up to 0.97
His Bili also shot way up. From 6.5 to 8.6...

Not good numbers and his MELD is now 21. Looks like he will need to start going to get blood work more often.

Could the rise be due to the edema? The concerning thing is the Bili. This is the highest it has been even since his initial hospitalization.

Is there anything that needs to be done once it gets to a certain level? Or is it just something that can't be controlled without a transplant.

Hi Lostson.
Your dad's creatinine level is well within the normal limits even if it went up from 0.78 to 0.97 His bilirubin is definitely concerning. What do his doctors say? Are the whites of your dad's eyes yellow? Does he look jaundice? Also, now that your dad's meld is beginning to increase, have you asked the transplant coordinator where he falls on the transplant list, based on his blood type and meld score? As my mom's meld began to increase, our coordinator would always tell me where she was on the list, whenever I asked.
How is your dad feeling?

Had a great conversation today with one of the transplant coordinators. She took the time to hear me out and give me as much information as possible. Ultimately we both agree it's sad that where we are at a transplant isn't likely until the upper 30's. (for his blood type) and that she estimates his place on the list to be around the 400-500 mark. :-(

She didn't hesitate to sugar coat the situation saying that yes most people by that stage are near death. But that you just never know and she has a person in for a follow up today that has a MELD of 41 and is still up and walking around feeling somewhat fine.

She also said that the best advice is to take it a day at a time and enjoy as much of my dads company as I can now. Because you just never know. I hate hearing the facts but also need to keep things in perspective.

I have also asked the Doctor what her take is on his high Bilirubin numbers. I will wait to hear back.

It has been a rough few days for me, I hate to admit I had a minor breakdown 2 nights ago when I saw my dad with his sad eyes and worse of all is my mom. She is the one that holds everything together and her health is going downhill quickly too. She is on vacation this week and she is so happy with the timing because she feels she can barely continue. If she has to stop working lord knows what will happen. Not to mention caring for my father becomes that much more difficult.

Then work is beating me up mentally. I need a vacation from this place! Maybe I will go and buy a lottery ticket and win enough to get my mom out of work and allow me to quit and care for my dad (One can dream right?)

Good day to all!

Hi LS,

The dual listing is explained here on the UNOS site:

Unos Multiple Listing


It is a bit complicated but check it out if you ever find the time. Everything depends on the length of time it takes to get to another transplant center, luckily they allow more time for livers than they do for kidneys, pancreas. They are divided into local, regional, and national segments. They will first attempt a match locally, then regionally and so on.

When my brother was listed at MGH Boston, he decided to take the advice and go to Mayo in Jax to have a better shot, and he did. Expensive to relocate temporarily and the other TP center will likely require another evaluation (which takes time and insurance needs to agree to pay for the 2nd one).

As I said before, by the time he got on Mayo's list, he waited only 11 days for his liver. I'm sure that is the exception rather than the rule, but there you have it.

Hope dad improves and things look better soon.

Well I will cheer for the bright side! I am glad your Dad is knocking down his documentation. Hang in there...you are a good son. Big hugs

LS, can you come up with a pseudonym so we can stop calling you 'lost'? It has a sad connotation.

I just would rather call you by first name, even if it's fake....after all, we are almost family now :)

Hugs

Hi Alex,
Glad today is going better for you. Some days just start out better. I do understand the ups and downs. Nice name ;) Big Hugs

Carol,

That is a great way to look at it and I do try and tell myself I will be OK no matter what the outcome, but I know I am kidding myself. Deep down I am very optimistic. I hope it doesn't bite me in the rear end.

Yesterday I took off work right after lunch to stop by my dads. We started talking and before I knew it we were out shopping for some steaks and chicken to grill. He wanted to show me his secrets (He is known for being a grill master. ) So I called the office and said I was taking the afternoon off. It was so spur the moment and it turned out to be a great afternoon.

It got even better when we grilled together that night and joked around and best of all am one step closer to filling his shoes! I think I did pretty well if I do say so myself...Then after it all that night I was in bed just thinking how I wish I had done this more often years past and not now just because of the situation. (I need to stop ruining good moments with the what if's) But if nothing else I am sure many of us caretakers here have had an eye opener. I am much more family oriented now. And best of all I am learning to leave work at work. 2 nights ago I put away my work files and resumed writing a book I have been working on.

I am not ready to say goodbye and don't even want to think that way, so I hope there is a happy ending to this story!

One day at a time...

Sounds like you had a really wonderful day with your dad.

Don't worry about what has been, or what might happen. Treasure the good times. The now is what counts.

Hi Alex, I hope your Dad does get his disability. The process for disabled people should not be months or years when they are sick. But get through the process, make the appeals, if needed, and I hope for the best for your Dad. Big Hugs

Is it just his feet? Or his legs too? I remember those days, that was about 2 years ago when my dad would blow up like a balloon. The last 6 months he was like a skeleton. If your dad does get drained please make sure they do it correctly, I think that was a negative with my dad, they were not draining him correctly and losing things your body needs to survive. Thinking of you.

Trying to figure out when to go to the ER and when you just wait and see because it is part of the process is tough. This morning my Mom called saying my dad was feeling pretty bad. Very dizzy, feeling like he wanted to vomit and slight bleeding from his nose.

I went to check on him and he said his heart beat was high and he was walking very slow and obviously dizzy. He said he felt like passing out. I offered to take him to the ER but he said he wanted to lay down a while to see if he felt better.

I had to get to work for an 8 oclock meeting but am thinking of trying to leave early to come keep an eye on him.

His paracentesis procedure isn't until Monday morning. I am hoping that helps.

Kidney stuff can creep up on those with End Stage liver disease also. I'd take him in if you can convince him to get checked out.

If he has fever or cannot be roused frim sleep call 911.

Hugs

ML