In the darkness the trees are full of starlight (henwy) wrote,
In the darkness the trees are full of starlight

  • Mood:

Life is pain, highness. Anybody who says differently is selling something.

'I am glad you are here with me. Here at the end of all things, Sam.'
-J.R.R. Tolkien

Returned from Niagara Falls on Monday and immediately had to zip off to the doctor's appointment. It's sort of sad to contemplate but this is the first trip I think we've had as a full family since I was perhaps 8 or so, even if there were a hoard of new rugrats with us. It's also has a fair liklihood to be the last. Everything that has a beginning, has an ending.

I'm not sure when I'll get around to popping up pictures from the trip since I'm currently having a harddrive space issue and dropbox can't download and synch everything until I get that sorted. It was a nice, though short, trip and all the kids seemed to have a lot of fun which was nice. There was a bit of an altercation at dinner the last night though.... Connie has gotten more and more ornery and less patient over time. I know it's a bit hypocritical for me of all people to point that out, but her frustration tolerance when it comes to family is short. She often makes snide remarks, though mostly in English so I'm not sure just how much goes through and expresses irritation at all of these sort of trips or any family gatherings. Since we had a bunch of those free drink coupons they pass out for the Embassy Suites' evening receptions we ended up cashing all of them in and she downed a few glasses of wine. As some point, Dad made some concerned/obnoxious comment that she was probably drunk and it all sort of blew up. Frankly, I think it's the fact that she's so used to being the drill instructor/general of her own family that she chafes in these situations where people don't simply fall into line. It did tend to end things on a bit of a sour, melancholy note. There's a chance that Jeff will be offered a job transfer to Atlanta where he'll be making even more money and Connie says she'll jump at the chance if for no other reason than to get away from all of us for a while. The ties that bind, unwind.

I spent around 3-4 hours yesterday morning calling doctors galore and every transplant center in the state. It turns out that medicaid will only pay for someone to be listed at a transplant center in new jersey and not elsewhere. It also happens to be that the waiting times in this part of the country tends to be on the more egregious side. I think I've generally read that the average wait time across the country is 4-6 years and considering that I have at least a couple strikes against me, an O blood type and a previous transfusion (assuming everything else is good to go), it's unlikely I'll be anything but on the high side of that range. The two centers I'm getting evaluated at first have wait times of 7 and 8 years on average, respectively. Even worse, it turns out that at least 3 of the 4 centers seem to be on an organ sharing network together so you can only choose one center to join as far as the waitlist goes. This might also be true for the 4th but I have no clue currently. It basically means that you only get one bite at the apple in this area and while others might list at out of state centers, I'm limited by what medicaid will pay for.

It is sort of amazing what the differences in time can be. Barnibus, the first place I called here in jersey has a wait time for 8 years and change, but when we were visiting Niagara Falls we drove past Erie County Medical Center in Buffalo which has a wait time of just 9 months. It reminds me of those stories of how Steve Jobs managed to get an liver transplant. The wait times in his home state of California were abysmal and he would have likely died waiting for an organ. It was sort of insane that he would have gotten a transplant organ anyway considering he had pancreatic cancer and was basically a dead man walking but he had his doctors look to see where the wait times were lowest and basically listed himself there, even going so far as to buy a house there. I guess if you had the resources you could just list yourself at all 83 kidney transplant centers and even offer to pay out of pocket, pretty much guarantee that you'd be back on your feet within a year at the worst. It sounds sort of terrible at first...but maybe life should go to whoever wants it most.

'Some will win, some will lose.
Some were born to sing the blues'
Tags: family, kidney disease, niagara falls, transplant, travel

  • Post a new comment


    Anonymous comments are disabled in this journal

    default userpic

    Your reply will be screened

    Your IP address will be recorded