Posted 9/30/2015 5:41 PM (GMT -6)
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 place of, at full time. I worked the occasional weekend gig (I am a chef) to help keep all our 'stuff.'
I could do this since my wife was in the hospital so much she got to come home as a 'reward'....code word for she is going to die when she comes back, so let her go home for a few days.
And she didn't. She lived. She made it through and got a liver transplant. At about 5 months into this rollercoaster so many here have lived, or was at the side of. Screaming in your head. I felt like if I started screaming I would never stop. I probably wouldn't have.
I watched her basically exsanguinate three times. And they put it back. And stopped the whole' dead' thing. I watched while they came up with amazing drug treatments that are not really heard of, but worked...well, enough. I felt so dammed HELPLESS. But, being there, her knowing I was there, every day. That helped more than I can say.
Keep a GOOD record as this goes on, so many docs, SO many teams. Things get lost in the cracks. I am disturbingly good with facts and times and all (chef thing) and not all are, so keep a good file on everything so that 'things' don't happen....Like when they sent her back upstairs covered in Heparin and removed her temp dialysis port. And she tried to bleed out AGAIN. I could not have stopped that, but I did stop/suggest many things that did work.
This forum...is priceless. She got transplanted and has been good (but for just not having the same life, she was a Pro Dancer, the ballet kind, not stripper, lol and just being easily tired.) But life will never be the same.
YOU need a support network, this is part of how we got her where we did. We have a Facebook page where I could keep everyone from our lives and beyond updated on what was going on, day by day. This was considered mightily when they made the decision to put her actually on the list, instead of just letting her go. She is now 42, that would have been terrible, yet happens everyday.
It sounds like you are about to experience what I did. Strong person, lot of damage, lot of possible outcomes. When she got to the last bit, they made her MELD a 50+ They called her 'the perfect storm' since she was basically dead but still going. And knew it (Trust me on this, remember 'lactulose enema'....just make sure that there is a LOT of protection around, lol, oh, just one of the well received suggestions I made.)
This was the most difficult thing I ever did. Many asked me HOW I could. I said, simply, HOW COULD I NOT.
Either way it goes, be not afraid to USE the internet. Use this forum. USE that search function. I did and learned SO much so fast. Even pulling 50-60 hr weeks, hanging at the hospital and taking care of 'things and stuff.' This is not a long haul, like I said, looks like you get to experience what I did. From Wha? To Holy F *** in 2.2 seconds. Be there, be here, go ahead and give yourself time now and then but do go overboard. It can mean the difference between life and death for him, if you are in for being a caregiver. LEAN on this forum, it's a great place to let it go when you need. Look at my past posts, lol. I was a BASKET case.
I do stop in here now and then to check up on people I feel very close to now. Feel free to ask me anything.
The people here, they are more than family now. They kept me sane as I could during that time.