2011 began much like any other year. New Years Eve turned into New Years Day. Then bang! We got slapped upside the head. A long time friend became estranged and abruptly "dumped us" and all her other friends too. Started a whole new life. We were hurt. And sad and in shock.
Then before I had to time to wrap my mind around the loss of a friend, the company I was working for, American Express, decided they were closing the Greensboro Service Center by the end of the year. I had the choice to either relocate or take a severance package. Relocating was not an option for us, even though I considered it for like a second. And the severance package would pay me until April 2012. Not too shabby. My last day was in late June.
Turned out this was a good thing for Lee and I.
In March, we left on a weeklong trip to Cleveland for his second lung transplant evaluation. We all know how that turned out. Good thing too. Neither of us liked Cleveland anyway.
Then came time to say goodbye to a close friend and co worker of mine. Jonathan and his
boyfriend were relocating to Florida. Jonathan made me laugh every day! Even when I was feeling my worst. Thank god for Facebook. At least I have his posts to read. I sure do miss him and his fabulous baking boyfriend Josh.
August brought yet another trip. This time to Pittsburgh. For the third and final transplant evaluation.
It took a month to get a response from UPMC but it was well worth it. Finally, good news in a year that so far had disappointed us. But how were we going to pay for it all?
Here's when things began to turn around. We all switched into high gear. Ideas were being
tossed about left and right. I quickly set up a donation page for Lee. And of course the Lungs For Lee Facebook page. And before we knew it, a benefit concert was planned. The stress of how we were going to pay for it all was slowly disappearing.
You know the rest...Pittsburgh. Family House. Waiting. And waiting. And waiting.
With less than 3 hours till the stroke of midnight on New Years Eve, I'm feeling a bit down. I can't help but think about the past year and all the ups and downs we've dealt with. I can't help but think of those who are no longer part of my daily life. I even miss work. Or maybe I just miss the people.
But a great deal of good has happened this year too. I've met new friends, strengthened current friendships and reconnected with old ones. I've learned new art skills. And I'm cooking more. Not that it's good but at least I'm trying. I've also learned how to be a better caregiver. So if any of you get sick...you're on your own. But I'll be glad to TELL you what to do.
To all of you reading this...don't forget to be good to one another, be kind to animals and smile more.
Saturday, December 31, 2011
Friday, December 2, 2011
All I want for Christmas
What do I want for Christmas? A new set of healthy lungs for Lee. And maybe those sparkly earrings I saw at Macy's. But most importantly, lungs for Lee. And perhaps a gift certificate to the glass center. But really, lungs are top of the list.
Like I've said before, we've been told we won't have to wait long. Now, with Thanksgiving behind us and December upon us, we're starting to get nervous. Maybe it WON'T happen before Christmas. Oh no.
Here's why we think that. There are 4 Family House locations plus several hotels close by that house patients waiting for transplants. Each one of them has been assigned a Lung Allocation Score, referred to as "the number" in conversation. (what's your number?) As I've mentioned before, this LAS consists of blood and tissue type and lung/chest size as well as age. If it's a baby or child, points are automatically added to their score because they get first dibs. If they're older, over 60 for instance, they also get points added. Remember the higher the score, the worse off you are physically and the earlier you'll get a call.
Here at this Family House location, there are currently 3 people that we know of waiting for
double lung transplants. There was a 4th but one of her lungs collapsed last weekend and she shot up to the top of the list and got her transplant this past Monday.
Ed, the ex NYC cop who is 73 years old with Pulmonary Fibrosis has a score of 44. Just like Lee. They also have the same blood type. He's only been called once and that was back in May. And it was a false alarm. No calls since then.
Then there is Dennis. He has Scleroderma, an autoimmune disease, and is in his 60's. His score is 61. No calls yet. Been waiting about 3 weeks. This dude is pretty bad off too. He breathes heavy just sitting.
Then there is Lee. 47 years old with Pulmonary Fibrosis and a score of 44. He actually uses more O2 than Ed and physically has more trouble getting around but Ed will, more than likely, be called sooner.
Interesting fact: When someone gets that precious call, there is a back up or secondary patient who also gets the call. So if the lungs don't fit the primary or if the primary decides against taking the lungs (they may be considered high risk...say the donor was a drug user) then the back up may have them.
Since it's the holiday season, things are supposed to "pick up." In other words, more people are going to die. I've joked that a busload of people, maybe a group of really mean prisoners, needs to drive off a cliff so that those waiting for organs can get them.
I know that's horrible to say but shit, I'm tired of waiting. I'm getting impatient.
Several people have asked me, do you get bored? Nope. I've experienced every emotion and every state of mind there is since we've been here and boredom isn't one of them. I am CONSTANTLY busy. I clean, I shop, I do the laundry, I occasionally cook & bake, I do all of the driving around town, I take Lee to appts., I write emails, I send cards, I pay most of the bills...no time to be bored.
Oh yeah, and I've been eating a lot more. Great time to eat more, right? The holidays with their delicious and fattening sweets calling my name plus the added benefit of stress. Yep, I need to start exercising. Guess that's why I now own 4 pairs of lounge pants. yikes!
To recap, all I want for Christmas are a sparkling pair of earrings, a gift certificate to the glass center, diet pills and the superhuman power to say no to sweets but most importantly and hopefully sooner than later...NEW LUNGS FOR LEE!
Now if I can just find the keys to that bus parked out front...
Like I've said before, we've been told we won't have to wait long. Now, with Thanksgiving behind us and December upon us, we're starting to get nervous. Maybe it WON'T happen before Christmas. Oh no.
Here's why we think that. There are 4 Family House locations plus several hotels close by that house patients waiting for transplants. Each one of them has been assigned a Lung Allocation Score, referred to as "the number" in conversation. (what's your number?) As I've mentioned before, this LAS consists of blood and tissue type and lung/chest size as well as age. If it's a baby or child, points are automatically added to their score because they get first dibs. If they're older, over 60 for instance, they also get points added. Remember the higher the score, the worse off you are physically and the earlier you'll get a call.
Here at this Family House location, there are currently 3 people that we know of waiting for
double lung transplants. There was a 4th but one of her lungs collapsed last weekend and she shot up to the top of the list and got her transplant this past Monday.
Ed, the ex NYC cop who is 73 years old with Pulmonary Fibrosis has a score of 44. Just like Lee. They also have the same blood type. He's only been called once and that was back in May. And it was a false alarm. No calls since then.
Then there is Dennis. He has Scleroderma, an autoimmune disease, and is in his 60's. His score is 61. No calls yet. Been waiting about 3 weeks. This dude is pretty bad off too. He breathes heavy just sitting.
Then there is Lee. 47 years old with Pulmonary Fibrosis and a score of 44. He actually uses more O2 than Ed and physically has more trouble getting around but Ed will, more than likely, be called sooner.
Interesting fact: When someone gets that precious call, there is a back up or secondary patient who also gets the call. So if the lungs don't fit the primary or if the primary decides against taking the lungs (they may be considered high risk...say the donor was a drug user) then the back up may have them.
Since it's the holiday season, things are supposed to "pick up." In other words, more people are going to die. I've joked that a busload of people, maybe a group of really mean prisoners, needs to drive off a cliff so that those waiting for organs can get them.
I know that's horrible to say but shit, I'm tired of waiting. I'm getting impatient.
Several people have asked me, do you get bored? Nope. I've experienced every emotion and every state of mind there is since we've been here and boredom isn't one of them. I am CONSTANTLY busy. I clean, I shop, I do the laundry, I occasionally cook & bake, I do all of the driving around town, I take Lee to appts., I write emails, I send cards, I pay most of the bills...no time to be bored.
Oh yeah, and I've been eating a lot more. Great time to eat more, right? The holidays with their delicious and fattening sweets calling my name plus the added benefit of stress. Yep, I need to start exercising. Guess that's why I now own 4 pairs of lounge pants. yikes!
To recap, all I want for Christmas are a sparkling pair of earrings, a gift certificate to the glass center, diet pills and the superhuman power to say no to sweets but most importantly and hopefully sooner than later...NEW LUNGS FOR LEE!
Now if I can just find the keys to that bus parked out front...
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