I can Swype now. I've responded to a few posts. Maybe it's just an OP thing...she's got her 5 year follow up soon. Seems like yesterday. Was :-\ afraid I was going to lose her. But..yano what? I...
Good to see you! I'm sorry to hear about David......
5 years ago, y'all where the reason for my sanity. Well, 5 years later, the wife is still here. Transplant, total success. She's doing well. Kidneys are still limping along and no change, so that's...
Been away a bit, been a busy summer. Looks like it was for ya'll as well! SO HAPPY TO HEAR THIS! How's he doing?...
Mama is right, if he is in ESLD then he has to be sober to be on the UNOS list. My wife had a serious combo (at age 39) of hemocromatosis and AIH. And drank. That sober requirement is very serious....
AIH is very difficult to find, it hides rather well. Yes, you may need a biopsy. From the sounds of it, one can hope it is just gallbladder related (fats do make that flare up!) My wife has AIH and...
Sorry you are dealing with this, many here have. It is the most difficult thing to watch someone you love become someone you do not know, especially when they are there some of the time. My wife...
My honey is 2 yrs out and kidneys aren't the best but her prograf doesn't seem to make much difference. They monitor but they seem to be holding steady at 'just ok.' Thing is, she is pink, eats food...
Be thankful the PICC is in. My wife did not have that option so had an emergency one placed. in the femoral. When they went to take it out? Paperwork got mixed, I was at work, I can't do everything....
I am here all the time, now and then something tells me to speak up. Marti's pain is too close to home for me. And yes, she is doing great. I have a brand new kitchen I have total control of now....
Hiya. I don't post often, although I did a LOT 2 yrs ago. I felt like you do, overwhelmed and overworked, underfed and underslept. I was working full time, so I quit that job, took a 3rd shift in...
The wife was diagnosed AIH and Hemocromatosis, but it was not found till after a transplant. Prior to that, well, let us say they viewed her as a problem alcoholic until we both stressed how that was...
You might be tired, but we are not tired of hearing about your waiting. It will happen soon. The perfect one will show up :)...
It was early afternoon when they thought they had a match, they did the testing all afternoon/evening and we were told it was a GO about 10PM. They prepped her all night (she was seriously dying,...
What this forum gave me through that insane all too fast ride (I mean, total health to deaths door in days, matter of months then transplant or death....) I will always be stopping in here. Things...
Not odd at all. My wife told me several times the few days before she got the gift of a transplant that she knew she couldn't hold on, this was it. And she was right, they kept her alive by a...
This whole forum, and especially your story, Ziff...kept me sane while my wife was going through this whole mess. Thank you....
Sooner you get him in, the sooner you can start documenting sobriety. That will be the most important thing that he can do. Get labs started before it is too late. I watched my wife almost bleed out...
Any moment now! Such good news to hear :)...
I watched when my wife needed dialysis. It was hard on her, took a very long time. Yet she felt much better once the poisons were filtered out. That is a very hard one as it seemed once you started...
Hi all. My wife got a liver transplant on April 3rd. We, luckily, already lived within an average walking distance to some of the brightest minds in medicine, and two of the largest transplant...
Oh, we would have a donor. That would not be a problem. Prograf is hell on kidneys. But needed, so we all just deal. They just want to drag hers out as LONG as possible, since a transplant would...
And BTW, she is cleared to have 6 month appointments with her liver docs now! Last she went in was the first time they really got to see her, it was really cool the reactions since the last time they...
We are now under the care of a kidney team, no big deal but more for keeping a very close eye on them. There will be another transplant (kidney) in the future but it could be ten years. We knew this...
:) Rest well and enjoy having you together!...
It is very hard to deal with the aftermath, after all I had fought so hard for and her getting her transplant...I was a bit lost. And I did what I normally do. Bounce back and do THINGS. He will be a...
What was so scary was HOW sick she got in so short a period of time. Things people see accumulate over years happened in months. Such a blow to the psyche. But all is well now, and this made us both...
She is on 3 MG of Prograf and 100 MG of Gabapentin and doing fantastic. Still very easily worn out. Very mentally there *(huge relief as where she was she should NOT be) and happy as she can be....
Caregiving....it is not expected and handed to us. We accept and we are in for the long haul, then...well, poo happens. There will be so many times you question your own sanity. I though alcohol must...
BTW, Those out there...her MELD was set at 50. As in there is no way to measure. They were amazed she still lived (much less was able to do anything, like walk with help and go to the bathroom, with...
Watching the kidneys, as of today (she only has to get drawn once a month now) they said they were not where they would like, but acceptable. Even more when they found her kidney docs took her off...
I don't know if you can travel but Swedish, in Seattle, has a three month clause on sobriety. They found that someone who has lived that long, in that condition, has a mental clarity to say. "Yeah,...
Be their support, let them vent on you as it is very hard to caregive in this type of thing. The person you knew can be back, but they have a hard journey to get there and they can forget...who that...
I would have here, we had a line of people who wanted to donate. But this program only uses the entire liver. I hear good things, hope you find someone. Turn to social networking. A friend of ours...
It has now been a year. Thanksgiving looms and the memories come back. Hard. My wife, who has always been so strong and healthy, suddenly was not. She was throwing up blood, she was out of her head...
Oh, Jodi. My heart aches for you and your family. I reiterate what others have said: your dad knew/knows how much you love him and you did all the right things by him. I wish there were magic words...
Jodi, I haven't been posting much, but I have been following along with your posts. I just wanted you to know that I do daily keep you and your family in my thoughts and prayers. Hugs, Shannon...
Dear Scared and Sad, My prayers go out tonight to your father and to yourself and your family. There is always hope, especially now that he is in the hospital, has a history of being a strong,...
S & S, About the blood work: if they cannot get even one vial of blood from him, he is dehydrated (even if his abdomen and legs are super-swollen, that fluid is not where it should be.) Get him to...
Wow. Even after being in a coma he still refuses to go back in when it is clearly needed? Yes, he wins the stubborn award. I wish I had a magic answer for you. Just keep working on him and keep the...
I am more than happy to offer support and just share my experience. A lot of technical questions about my treatment pre-transplant (from December 2013 till transplant) are somewhat murky to me, not...
I confess I have only read parts of this thread so far, but have you tried calling the hospital or his liver doctors and having them send informed EMT's with an ambulance to get your father, who is...
About my current meds: There have been lots of changes, stops, and new Rx's, but this is my current cocktail: Tacrolimus (Prograf) 2.5mg - 2X a day Myfortic (Mycophenolate) 180mg - 2X a day...
Thank you all! I do my very best to follow my doctors instructions precisely. That means if I am tired or feel like I'm over-doing things, I stop and rest or nap. My doctors keep saying that I'm...
Dear Scared and Sad, Get your Dad to the hospital now. I would not be sitting here 2+ months post liver transplant if I got my way when I refused to go to the hospital. Luckily, my wife, neighbors,...
Hello, This is RKayne's wife posting. I had my transplant on April 3rd, so I am about 9 weeks post-op. Last I met with my doctors, they were very pleased with my progress and recovery - said that my...
Hi S&S. My wife had a meld calculated at 50 at one point. yes, they stop at 39 but that is what I overheard. She spent about 6 months in the hospital. it was autoimmune hepatitis and possible...
Yes, NEVER give up. You are the most important thing to her right now. I went all out as my 40 yr old wife was dying. I even had her inpatient transferred to another hospital system here as they...
It is official, her kidneys are fine! The dialysis port was removed Friday and everything so far is good. After her doc appointment we will have to post about all this :)...
Not Hep C. Autoimmune Hep. An a new twist, it's twin, this sort of monster carries something insidious behind, along with, but hidden. THE FOUND IT. Hemochromatosis. Iron is the enemy. But, there are...