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7/10/13 NEW UPDATE IN POST #1 -- If you can spare a couple of prayers or good thoughts today...


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7/10/13 -- NEW UPDATE ON MY DH


I'm putting this right on top so no one has to read the whole thread to find it  (or even this whole LONG post!)


Here's the latest -- 


After a whirlwind several weeks of visiting doctors and doing a ton of research, things are still not great but are better than we originally thought they were. My dh definitely has cirrhosis and will probably need a liver transplant... but it will probably be at least a few years until he needs it, unless there is some sort of decompensating event in the meantime. His liver looked awful in the photos, but is functioning better than expected, so that's a huge positive thing, and thankfully there is no cancer.


The doctors ran a bunch of tests, and again, the results weren't great, but were quite good in an "all-things-considered" sort of way. The consensus among the doctors is that my dh should get on at least one liver transplant list, and preferably more than one, so that when he really needs a liver, he'll have a better chance of getting one. So my dh is in the process of being evaluated by the Mayo Clinic, the Cleveland Clinic, and Indiana University Hospital, all of which are supposed to be excellent. He will also be evaluated at University Hospital in NJ, just because it's the closest transplant center to us (and the NY transplant list is so long that it's not worth trying to pursue, when we have better options elsewhere.) The NJ hospital has decent survival statistics, but the others I mentioned are better, so ultimately we probably won't end up in NJ.


There are lots of hoops to jump through, so we are very blessed that my dh is feeling well right now, and that we found out about the cirrhosis before he started having bad symptoms that would have made it very difficult and uncomfortable for him to travel. I keep thinking about all of the people who find out what's wrong with them when they're already terribly ill, and it must be absolutely overwhelming for them and their families. We feel overwhelmed, and we're fortunate enough to be able to try to find the best doctors and to relocate if necessary.


So that's the story so far. 


I'll probably be starting threads soon about what it's like to live in Rochester, Minnesota (by the Mayo Clinic) or Jacksonville, Florida (by the other Mayo Clinic) or Cleveland, Ohio or Indianapolis, Indiana, because at some point we will probably need to relocate to an area near one of the major transplant centers, and I am entirely clueless about all of those places. My feeling is that once we have visited the different centers, one or two of them will stand out as being the best for my dh, and it would be best to live near one of them, so he can get to know the doctors and feel comfortable and familiar with the hospital and the environment. I figure it will be one less stressful thing for both of us when it's time for the transplant, if we have a home in the area and already know the doctors and feel confident in them.


I just wanted to say thank you so much for all of your kind words and prayers. They mean so much to me.  :001_wub: 

It feels so nice to be back. 














My dh is having his gall bladder removed this afternoon, and if anyone could say a quick prayer that everything goes smoothly, I would really appreciate it!

Heading out to the hospital now!

Thank you!!!

UPDATE: Thank you so much for all of the prayers and good thoughts -- I can't begin to tell you how much I appreciate them.

We got some very unexpected news at the hospital today. It turns out that my dh's gall bladder is the least of his problems. The surgeon told us before the surgery that he didn't like the way my dh's liver looked on the ultrasound he'd had last week, and that he was going to check it out while he did the gall bladder surgery. As it turns out, my dh has advanced cirrhosis of the liver, to the point where the surgeon has told us that my dh will probably need a liver transplant (assuming he meets the requirements.) He took a biopsy of my dh's liver, and also took several photos of it, and he said that although he wasn't able to see the entire liver, he didn't see anything that would suggest cancer.

This is really scary. The surgeon said that this isn't so immediate that my dh will need to fear for his life within months or anything like that, but since my dh's mother died of liver failure, I keep imagining him going through the same things she did -- and although I'm trying to be encouraging to my dh, I'm having a hard time processing the whole thing.

Obviously, my ds13 is very worried, even though both my dh and I are trying to be very positive about how people with cirrhosis can live for several years, and that dh will probably be a good candidate for a transplant. (DH never drank, doesn't have hepatitis, and has no other major health problems that we know of.) If you could spare some prayers for my ds, it would mean so much.

So anyway, it has been quite a day. I don't have any real details about the cirrhosis yet, because my dh has to go see the specialist and get an MRI. Hopefully that will give us a few more answers. Right now, it seems like everything is up in the air.

Thanks again for the prayers -- I'm trying to keep reminding myself that the news could have been worse, and that even though this is really bad, dh is home and feeling pretty well, and we have time to figure this stuff out. Had dh not gone in for the surgery today, we might not have found out about the problem until it was too late to even try to do anything about it, so I'm trying to be thankful for that.

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Prayers to you and DH! And his doctor.


Beware the "gas bubbles" post-surgery. It may take a while for him to find a comfortable position, so once he finds it, for the love of Hippocrates, don't make him move! It gets better after a few days.

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Oh Cat!


What a big thing to wrap your heads around.


You are right, of course, that as scary as it is it is a positive to know.


I will be praying peace for all of your family, wisdom and compassion for all of the medical professionals you will interact with, that your husband's recovery from this surgery will be quick.



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I'm praying for all of you. My dd had a hard time when I had my gallbladder out and with it a blood clot that went to my lung. It's a tough age to not have your parents in command. I'll keep him in my prayers. :grouphug:

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I'm sorry to hear about this new diagnosis. It is encouraging that his physicians feel he will be a good transplant candidate and I will pray for strength and guidance for him and your family through that process.

Hang in there.

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Oh, goodness Cat... what a day. It is a good point that had he not gone in today, you might not have learned of this until it was much more advanced. It's still a lot to process though. Thinking of you as well as DH and DS... wishes for strength, comfort, and wisdom. :grouphug:

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