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My official cry for help

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I'm posting this update here on the "front page", because, frankly, nobody ever scrolls down to check the updates.
Hubby actually did live to celebrate our anniversary on August 26th. Your generous donations helped me to cover some of not only the lost income from my business while caring for him, but also enabled me to pay copays, buy prescriptions, cushions, compression socks, glasses and the little things that made him more comfortable.
Every time there was a donation, I would tell him - he'd smile, and look a little more relieved. Even in his condition, he was worried about me and how we were going to manage this sudden upheaval in our lives. Your generosity allowed him to focus on just staying alive and me to focus on just taking care of him. For that, I will be forever grateful.
So, the dialysis helped his heart somewhat by taking the fluid off that was crushing it. His Ejection Fraction had improved slightly. His color was good. My "energizer bunny of husbands" was back, I thought.
He "graduated" from using a wheelchair to a walker. Transport became me and our little old truck three times a week.
He was actually getting so much stronger that I purchased a small turkey for Thanksgiving, and he was truly excited and looking forward to go in for one additional procedure on October 13th to place a more permanent dialysis catheter (a graft, actually) in his thigh so he could get rid of the temporary "permacath" in his chest.
Apparently, the outpatient surgery was just too much for his already weakened and incredibly damaged heart to handle.  While he made it through the procedure itself with "flying colors" and even joked with the OR staff, he just never bounced back. He was weak, nauseous, dizzy.
We talked about whether this was too much for him, if he wanted to just call hospice. He said no. With the same determination I'd seen countless times in our 22 years, he said I want to fight. And... He fought. He fought with the heart of a champion until the very end.
On the afternoon of October 21st, I brought him home from the Friday session of his three times a week dialysis. Got him in his comfy chair, and gave him a homemade popsicle. He ate it, and settled back for a nap.
At 7:20 p.m., he asked for another popsicle. I handed it to him, walked out of the room to get him a change of clothes out of his dialysis shirt and pants (which, again your generous help allowed me to get for him) and was going to do some laundry.
I wasn't more than 10 feet down the hall, when I heard him say "AAHH!", ran back in, and found him slumped over in his chair, a half eaten popsicle on his lap.
Despite my panicked call to 911 and frantically doing CPR he was gone.
His final "gift" to me was to wait until I had walked out of the room to leave me forever.
So, I grossly underestimated how much of a hit my business would take over the last three months; and I am still somewhat in shock over what seems like the "mailing list of medical bills" we somehow ended up on.
Because it was an "unattended death" the ambulance service, paramedics, police and coroner were all called out. I'm pretty certain that I will be getting invoices from them as well, and his insurance didn't cover ambulance.
So, we've come full circle back to where we started when we began this journey in August.
Now that I am a much-too-young-widow (IMHO), I'm once again hearing from much loved friends and acquaintances "Let me know what I can do".
So, I am reprising my earlier plea. The GFM is still open. If you've donated, thank you from the bottom of my heart. If you've prayed, know your prayers have sustained us. And if you can share this, I would be most grateful.
Thank you again for everything.
[Update to the update - dang - funerals are expensive.
I thought I had "budgeted" enough, but I need to accomodate hubby's 90 year old father as well. My plans for a simple graveside service need to be tweaked to allow for using the chapel at the cemetary with attendant costs, because Dad cannot walk on the grass.]

If you didn't read it before, the original post is below:

For the many if you who've said "let me know if I can help" - this is my official cry for help.
Here's where we are:
Hubby's heart, kidneys and liver have all failed.
However, after an agonizing Saturday with a poopyhead hospitalist with zero bedside manner, and whose stupidity threw hubby into a full blown panic attack - I was able to corner both the cardiologist and nephrologist at the same time. That meeting of the minds resulted in this:
We're bringing him home with palliative care not hospice (yet).  The nephrologist has put in orders for outpatient dialysis. The cardiologist said no more heart meds - it's holding its own and any meds they'd give him would only further damage the kidneys. He said that he'll more likely pass from kidney failure than from heart failure. But their joint decision is that the dialysis might keep enough fluid off his heart to keep him alive.
We will take those odds.
We met with the palliative/hospice people this afternoon. To continue dialysis, he cannot be on hospice. And he wants to continue dialysis as long as it helps him to have a few more weeks or months with me. 
But, palliative care won't pay for dialysis - we have to do that out of pocket. From talking to our insurance carrier today I "think" that the maximum we can get hit for dialysis is $4300.00.
Hubby's conversant, he's aware, he's relatively pain-free. He's just horribly weak. But, he wants to come home. He does not want to die in a hospital with wires, tubes and strangers. I'm going to move heaven and earth to make that happen.
He is not in denial. He knows he's terminal and he's accepted that. I have as well. His new goal is just to pass at home and, if possible, spend one more anniversary with me on the 26th.
That brings up a whole host of new problems.
Problem #1. I have no clue how to transport him from home to the dialysis clinic. I'm making calls and trying to arrange transportation.
Problem #2: I am pretty sure I'm going to get hit with huge bills from hospital and consulting docs. He wants to live as comfortably as he can for as long as he can and I'm bound and determined to not let money dictate how long he's going to live.
Problem #3: I'm self employed. Heck, some of you were kind enough to help me out almost 18 months ago so I could get my new state-mandated license to help people. You have no idea how much pride I've swallowed to have to ask for help again. My husband comes before our business and this time (whatever it is) is guaranteed to wipe out our meager savings. But, it's also an opportunity for me to send some quality last time with my partner in life.
Problem #4: He's been in such not-great health for so long and really all of our "expendable" income has gone to co-pays and prescriptions - oh heck no we don't have life insurance (or even burial insurance for that matter).
I'm lost. It's bad enough that I'm losing him, but being put in an untenable position of being forced to lose him sooner is breaking my heart even more.
So - yes, help.
I'm open to suggestions. I'm determined not to run out of options. I just want to honor his wishes and do the right thing.
We already have grave plots (at least it's something, right?) And yes, we fell into the "I'll do it someday" trap as far as pre-handling the rest of the funeral expenses. I still have no grasp of how much that will be, so I'm estimating $1000 (probably low). Hopefully, the funeral won't hit for a while, if the dialysis works - so I'm not as worried about that. Update - several friends just reamed me and said I should increase the amount. I am way underestimating funeral expenses.
If you're in a position to help, thanks from the bottom of my heart.
If all you're able to do is send a prayer or positive thoughts, thanks for that too.
And most importantly, if you still have loved ones - go hug them. Right now.

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    Organizer

    Judi Sheeks
    Organizer
    Colorado Springs, CO

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