Seriously needing some prayers, positive thoughts...whatever you can send!

As I've mentioned before, Robert had said that he didn't think he'd go through another transplant. Well now that his options are pretty slim and his docs have given him 6 months, I started thinking about it again. During the same visit that they gave him his expiration date, his doc also said that a second transplant wasn't an option because the same thing would just happen again (virus becoming so aggressive). That seemed logical to me, but I didn't really think much more about it at the time - I was still trying to process the other news. But after a few days, when I could think clearly again, a thought occurred to me. Wouldn't there be a decent chance at a good outcome if he was able to get a second transplant - and then (knowing how aggressive his virus is) begin treatment as soon as possible (probably with the new treatment regimen)? I believe so.

My thoughts, opinions, and suggestions about all of this do not come from a place of desperation (although of course, I desperately want him to live!) - they come from the hours of research I do, every day - and also from plain old common sense. I didn't ask his coordinator right away, mainly because we had already been told that another tx wasn't an option. But the more I thought about it, the more it made sense. So I sent her an email. I wasn't holding out much hope because I figured they had probably considered that scenario already and ruled it out. Well to my surprise I received an answer from her the other day - she said that discussion of a second tx for Robert will be brought before the committee on Tuesday! I couldn't believe it - his doctor had made it clear to us that it would have to be a viable option before they would even take it to the committee, and that it was NOT a viable option. HAH - don't tell me, Mr. M.D., that I'm just supposed to accept what you say and not keep fighting!

I fully understand that my scenario is a long-shot, but I have to keep advocating for Robert, for our family. I can't, and won't give up. I won't stop til I've exhausted every single option.

I really didn't mean for this to be so long and involved! I haven't told anyone what I've been doing - or about the committee on Tuesday, not even Robert. He's not doing too well emotionally, so I'd rather see if it is even possible before I tell him - no need for added stress.

So anyway, I am asking for as many prayers and positive thoughts as humanly possible - that the committee will agree that a second transplant IS an option. If they do agree, the final decision would of course be Robert's - I just want him to have that choice. Ok, I'm exhausted! Forgive me for any typos - I just don't have the 'oomph' to read over what I've written! Lol

Have a peaceful day......

 "The squeaky wheel" pays off once again. Albeit still just a chance they will go ahead with the next TP, It's better than saying you didn't give it 100 percent in the fight. Whatever the decision, Know you did the best. You have my support and I will keep your family in my thoughts.

 Ziff 

Hi Splashdancer,

I am sending lots of prayers and hope that Robert gets his chance at another transplant.

Miracles happen everyday so why not one for Robert.

Gentle Hugs,

Kitt

Connie, of course I understand that it's ultimately Robert's decision (last paragraph of my original post) - and that is why I am fighting so hard on every front - I want him to have every viable choice available to him. As for the HepC treatment - that is part of what they will be discussing at committee on Tuesday. There was definitely a window of opportunity that he could have begun treatment, but since the virus was 'behaving', it was thought there was time to wait. Then the virus suddenly ramped into overdrive, and it was too late for treatment.

Yes, there is a lot to be considered. All I am doing is making sure that every option is explored and that he has every available opportunity to fight this horrid disease. He knows that I will support whatever decision he makes - we've had each others' backs for 14 years.

WD, thank you. I will never stop advocating for Robert - he would do the same for me. And I don't know about being an 'amazing' caregiver - I just do what needs to be done, and believe me, I have my moments when I just want to find a cave to hide in, stick my fingers in my ears, and say, "I can't hear you!".

Thank you also, Ziff! Yep, I tend to be really squeaky when it comes to caring for my family - not enough WD40 to shut me up! And yes, I need to be able to look at myself in the mirror knowing that I've done everything possible.

Thank you, Emma and Kitt - your prayers and positive thoughts are VERY much appreciated! Years ago, I witnessed what I consider to be a miracle, so I know they can happen......

Thanks, SyXx! Robert has always depended on me to help him make decisions about certain things, and this illness is one of those. Any decision that is made affects our entire family, but I've always told him that he needs to do what's right for him, because he is the one who has to physically live with the decision. I would never want or expect him to do something just because it's what I (or the family) wants.

I am sending you and Robert all the positive thought I can so that the committee makes the right decision and gives him the option of another transplant!!!!!!!

Thanks David, I will mention it to our coordinator, although I know that interferon is off the table because of his large-volume ascites.

Thank you so much, Susie! How are you feeling? I know I've said it before, but I am SO happy that you got your new liver!

I thought you might have missed the last sentence, Connie! Lol There is a definite reason that I haven't said anything to Robert about this. He has a habit of building things up in his mind and 'obsessing' about them - and then when whatever it is doesn't pan out, he gets VERY upset/depressed. Since I know this is such a long-shot, I didn't want to tell him - this way if they say "yes", I'll tell him and he'll decide if he wants to do it or not - and if they say "no", then it's done and he never knows it was even a possibility.

And again, if anyone has any ideas, opinions, or suggestions - please let me know! Thank you everyone....

Hey Splash!

I would not take this as totally negative. Remember, they have not said no to re transplant right off the bat. It also gives you and your friends here at Healing Well some time to do more research on the new drug treatments that are rolling out. If I can help in any way, let me know. I don't have Hep C so I am not as knowledgeable about it as others are but I am good at research. It must be my educational training ! Lol.

As the TC said, hang in there!!!!

Post Edited By Moderator (hep93) : 10/8/2013 5:53:40 PM (GMT-6)

Many, Many Prayers

If his liver is cirrhotic, he's already beyond fibrosis. Fibrosis is the precursor to cirrhosis. Somebody correct me if this is wrong.

Call me selfish, but I would be like "thanks, we really appreciated that first liver, but seeing as it didn't work out, how about following up with a redo??"

A person goes through the epic ordeal of ESLD, the eval, the transplant, and then comes the earth-shattering news that Robert got, don't you give him every opportunity to make him whole?  Just a tiny little recital after the rehearsal?

My heart goes out to you Splash, Robert and the whole family.  It's a nightmare, to be sure!  Sending all the good mojo your way :)

 

I need to ask a favor. While talking to our coordinator today about re-transplant and subsequent HepC treatment afterwards, she told me that there is no real research about treatment AFTER transplant (I'm assuming she's talking about with the new regimens). I know that's wrong because during my searches I have found info about treatment post-TX. For some reason, I didn't 'Bookmark' the sites. So now I want to find as much information I can about it to forward to her. If any of you know of a site, sources, whatever - could you please let me know? I understand that many of you are busy with your own stuff, but if you get a chance and can look, I'd really appreciate it! Thank you.

(BTW, Robert knows about it now - he called our TC and it came up in the conversation. He thinks he wants to try again, if he's given the option. He just says that he doesn't want to die at 48 and he can't handle the thought of leaving us.)

Mae, treatment would be AFTER transplant. I'm not sure they would consider treatment if a transplant is not done.

You are correct, Splash. The two new treatments I have mentioned, Sofosbuvir with Ribavirin and with and w/o Interferon, and the study which includes Sobosbuvir and Ledipasvir with and w/o Ribaviron are specifically for post-transplant patients with aggressive hep C. I believe it was Barry who originally posted the links to these treatments. You might try Googling them with these specific names or use the Search feature here.

I am so glad that Robert now knows he is being considered for transplant and that he is okay with it. He's right: 48 is way too young to die.

Hugs,
Connie