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CATWOMAN! It's so good to see you!

sparrow

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Catwoman

Catwoman

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Thanks, sparrow!

 

Things are better than we expected in terms of when my dh will need the liver transplant -- I'll post an update in my original thread so no one has to read the whole longwinded story all over again.

 

I still can't believe that the first thread I clicked on when I got back was the bfing one. :eek:

 

Here I was, feeling all sorry for my dh and worried about his health, when in reality I should have been ripping mad at him because he never offered to breastfeed our ds for me. :rolleyes:

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Miss Peregrine

Miss Peregrine

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Thanks, sparrow!

 

Things are better than we expected in terms of when my dh will need the liver transplant -- I'll post an update in my original thread so no one has to read the whole longwinded story all over again.

 

I still can't believe that the first thread I clicked on when I got back was the bfing one. :eek:

 

Here I was, feeling all sorry for my dh and worried about his health, when in reality I should have been ripping mad at him because he never offered to breastfeed our ds for me. :rolleyes:

LOL!

Glad to see you!

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sparrow

sparrow

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Thanks, sparrow!

 

Things are better than we expected in terms of when my dh will need the liver transplant -- I'll post an update in my original thread so no one has to read the whole longwinded story all over again.

 

I still can't believe that the first thread I clicked on when I got back was the bfing one. :eek:

 

Here I was, feeling all sorry for my dh and worried about his health, when in reality I should have been ripping mad at him because he never offered to breastfeed our ds for me. :rolleyes:

 

  :lol: And this, is why we've missed you!

 

Your family still has my thoughts. I'm glad to hear there's some better than expected news.

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Caroline

Caroline

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Welcome back...your dreams were your ticket out...welcome back...to the same old place that you laughed about...

 

((((Huggy-hugs)))

Well the names have all changes since you hung around.

 

But those dreams have remained and they've turned around.

 

 

Ok, not all of the names have changed, but some have. Good to see you back, Catwoman.

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Catwoman

Catwoman

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Awww.... thanks so much for welcoming me back like this!!!  :001_wub:

 

I just updated my original thread with the new info about my dh's condition, but I'll post it here too. Here's the link to that thread, in case my update doesn't make any sense without the details from the original post:

 

http://forums.welltrainedmind.com/topic/474844-71013-new-update-in-post-1-if-you-can-spare-a-couple-of-prayers-or-good-thoughts-today/

 

Here's what I posted there:

 

 

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. 

 

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Chris in VA

Chris in VA

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Glad you are back:-) ,and with better than expected news.

 

Just wondering if you also looked at Pittsburgh? That's where my brother had his double lung transplant about twelve years ago. My mom actually moved with him into subsidized a pts that the hospital maintained.Just throwing that out there.(He lived in Wisconsin and his wife stayed there to continue her job so they could still have an income.I think my mom and bro were in Pitt for four months or so until he got the transplant.)

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Catwoman

Catwoman

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Glad you are back:-) ,and with better than expected news.

 

Just wondering if you also looked at Pittsburgh? That's where my brother had his double lung transplant about twelve years ago. My mom actually moved with him into subsidized a pts that the hospital maintained.Just throwing that out there.(He lived in Wisconsin and his wife stayed there to continue her job so they could still have an income.I think my mom and bro were in Pitt for four months or so until he got the transplant.)

Thanks, Chris!

 

Pittsburgh was one of the first places I thought of, but it looks like their liver transplant success rates aren't what they used to be. From what I've heard, they had a big staff change or something, and now they aren't as good as they were before some of the doctors left. (I'm not sure if that's true or not, but their numbers are definitely down.)

 

It's too bad, because I know a guy who lives in Pittsburgh and he loves it.

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Liz CA

Liz CA

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Glad to read in your update that things are looking better than they appeared at first.

Will you really have to move and will your dh have to change jobs? If so, this is turning into a life-changing event.

There are often housing arrangements for relatives of patients near the Mayo Clinic and other large medical facilities, just in case you feel like looking at those possibilities...or perhaps you would like to move. :)

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