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...
Friday, November 11, 2011
Same as it never was
My apologies for being slack lately...hopefully this will make up for lost time.
Lee had two important doc appts this week. One with his new Pulmonologist, Dr Gries, and the other with his GI specialist Dr Jobe. We loved Lee's Pulmonologist at Duke, he was great. So we have high expectations. Let's hope she delivers something other than the baby she is carrying.
Dr. Gries thinks he'll be transplanted before January. But like she said, and we've heard countless times before, no one knows for sure. Great. Just great. An answer but not really an answer. All par for the course in transplantland.
The worst part about the transplant for Lee is the dreaded feeding tube. It's been an issue for him from day one. In fact, he almost decided against getting a transplant because of it.
Dr. Gries says that for him, he will more than likely be on a feeding tube for 2-4 months after the transplant. But maybe longer. Maybe for life. LIFE!? Ugh. Not what Lee wanted to hear. I told him he should eat whatever the hell he wants and however much he wants from now on.
More unknowns. Fabulous.
Turns out that there are now 2 people in "competition" with Lee for lungs. There are hundreds waiting, but only 2 others that have the same blood type, chest size, and lung allocation score. So instead of making one person mysteriously disappear, I have two. Got my work cut out for me.
If the waiting and the feeding tube issue aren't bad enough, let me add another crappy factor to this equation. His lame esophagus. It needs fixin'. And the way they intend to do that is with a second surgery called a Fundoplication. Here's the kicker, not sure how long after the transplant he can get this done. Originally, we heard 6 weeks. But now, after his appt with the GI specialist, they are saying anywhere from 6 weeks to 6 months!!!
More vagueness. Awesome.
Gee Leslie, got any good news? Oh yeah, kind of. Lee has been advised to take less Prednisone. The good news is he will now sleep a little better. The bad news, he feels worse and has less energy.
Ummm, sorry guess that wasn't all that good after all.
I'd love to report that we've completely settled in, that we're doing great. But the truth is, we're just ok. Although Lee seems to be handling everything much better than me. It's been tough, I won't lie to you. We can't seem to find a routine. Yet. And we both miss our furry companions something terrible. Mom is taking great care of the cats and Turtle and Waylon are making Stella feel right at home. But we can't help but wish the critters were here with us snuggling and purring and talking.
But no need to worry, everything will be alright. We've got friends coming to visit next week. And before you know it, Thanksgiving will be here and we'll be stuffing our faces with turkey.
Lee had two important doc appts this week. One with his new Pulmonologist, Dr Gries, and the other with his GI specialist Dr Jobe. We loved Lee's Pulmonologist at Duke, he was great. So we have high expectations. Let's hope she delivers something other than the baby she is carrying.
Dr. Gries thinks he'll be transplanted before January. But like she said, and we've heard countless times before, no one knows for sure. Great. Just great. An answer but not really an answer. All par for the course in transplantland.
The worst part about the transplant for Lee is the dreaded feeding tube. It's been an issue for him from day one. In fact, he almost decided against getting a transplant because of it.
Dr. Gries says that for him, he will more than likely be on a feeding tube for 2-4 months after the transplant. But maybe longer. Maybe for life. LIFE!? Ugh. Not what Lee wanted to hear. I told him he should eat whatever the hell he wants and however much he wants from now on.
More unknowns. Fabulous.
Turns out that there are now 2 people in "competition" with Lee for lungs. There are hundreds waiting, but only 2 others that have the same blood type, chest size, and lung allocation score. So instead of making one person mysteriously disappear, I have two. Got my work cut out for me.
If the waiting and the feeding tube issue aren't bad enough, let me add another crappy factor to this equation. His lame esophagus. It needs fixin'. And the way they intend to do that is with a second surgery called a Fundoplication. Here's the kicker, not sure how long after the transplant he can get this done. Originally, we heard 6 weeks. But now, after his appt with the GI specialist, they are saying anywhere from 6 weeks to 6 months!!!
More vagueness. Awesome.
Gee Leslie, got any good news? Oh yeah, kind of. Lee has been advised to take less Prednisone. The good news is he will now sleep a little better. The bad news, he feels worse and has less energy.
Ummm, sorry guess that wasn't all that good after all.
I'd love to report that we've completely settled in, that we're doing great. But the truth is, we're just ok. Although Lee seems to be handling everything much better than me. It's been tough, I won't lie to you. We can't seem to find a routine. Yet. And we both miss our furry companions something terrible. Mom is taking great care of the cats and Turtle and Waylon are making Stella feel right at home. But we can't help but wish the critters were here with us snuggling and purring and talking.
But no need to worry, everything will be alright. We've got friends coming to visit next week. And before you know it, Thanksgiving will be here and we'll be stuffing our faces with turkey.
Tuesday, November 1, 2011
We.are.family....house
It's been exactly one week since we landed on planet Family House. And wow, what a week it has been! A long ass drive to get here, a few hours of alone time at Phipps Conservatory, wheelin' Lee around gems and dinosaurs, an exciting Friday night trip to the ER, a beautiful Saturday snowfall, an annoying UTI for me, several residents giving us the stink eye, weird Halloween, and an afternoon at the Zoo. And that was just the first week! No wonder I'm so tired.
Let me rewind a bit and explain a thing or two. Places like Family House or an extended stay hotel close to the hospital are emotionally good for people like Lee. They get to meet others in the same or similar situations. We've already talked with a handful of people here like this young fella who got a bowel transplant. I didn't even know that could be done! There are 3 or 4 residents waiting for a lung transplant. One older guy has been waiting 5 months but he's 73 and has several other serious issues that make him high risk. A young petite gal needs a liver and both lungs. I remember her from the evaluation week in August. Then there is this young Asian dude. We don't know his story, haven't talked with him yet. He could be Lee's competition. If so, he's small and doesn't speak a great deal of English so I'm pretty sure I could "accidentally" make him "mysteriously" disappear. He's here with 2 caregivers. They are always down in the kitchen cooking up fabulous looking meals. Lee keeps joking about how we should try to befriend those folks. And quick!
Things have gotten better around here. For the last few days, I've been able to park onsite in one of the handicapped spaces. And some of those weenie residents here are well, still weenies but a few of them have warmed up a bit. I will say that Sunday when I was feeling my worst, I HATED having to get dressed and go downstairs to eat. We can't wear pajamas in the communal areas, they must be "street clothes." That sucks. So I bought a pair of lounge pants at Target yesterday with the word LOVE on my butt. I know what you're thinking. LOVE? Really? Look, there wasn't much to pick from and compared to some of the outfits I've seen here, I'll look fashionable. I also bought a nice fluffy pillow and a faux fur throw since the blankets on the beds are paper thin. We've also snuck in snacks but all meals are prepared in the kitchen and eaten in the dining room. So for me, not being able to cook and eat in our room is still annoying.
For those of you who don't know me or don't know me well, there's something you should know. I love to point out the obvious and often say things that get me into trouble. I'm terribly sarcastic and TRY to be funny but we all know often I can fail at that. So if you read my blog where I was bitching and moaning about Family House, don't be alarmed, I'll live. I'll adapt. This experience is not about me anyway.
Let me rewind a bit and explain a thing or two. Places like Family House or an extended stay hotel close to the hospital are emotionally good for people like Lee. They get to meet others in the same or similar situations. We've already talked with a handful of people here like this young fella who got a bowel transplant. I didn't even know that could be done! There are 3 or 4 residents waiting for a lung transplant. One older guy has been waiting 5 months but he's 73 and has several other serious issues that make him high risk. A young petite gal needs a liver and both lungs. I remember her from the evaluation week in August. Then there is this young Asian dude. We don't know his story, haven't talked with him yet. He could be Lee's competition. If so, he's small and doesn't speak a great deal of English so I'm pretty sure I could "accidentally" make him "mysteriously" disappear. He's here with 2 caregivers. They are always down in the kitchen cooking up fabulous looking meals. Lee keeps joking about how we should try to befriend those folks. And quick!
Things have gotten better around here. For the last few days, I've been able to park onsite in one of the handicapped spaces. And some of those weenie residents here are well, still weenies but a few of them have warmed up a bit. I will say that Sunday when I was feeling my worst, I HATED having to get dressed and go downstairs to eat. We can't wear pajamas in the communal areas, they must be "street clothes." That sucks. So I bought a pair of lounge pants at Target yesterday with the word LOVE on my butt. I know what you're thinking. LOVE? Really? Look, there wasn't much to pick from and compared to some of the outfits I've seen here, I'll look fashionable. I also bought a nice fluffy pillow and a faux fur throw since the blankets on the beds are paper thin. We've also snuck in snacks but all meals are prepared in the kitchen and eaten in the dining room. So for me, not being able to cook and eat in our room is still annoying.
For those of you who don't know me or don't know me well, there's something you should know. I love to point out the obvious and often say things that get me into trouble. I'm terribly sarcastic and TRY to be funny but we all know often I can fail at that. So if you read my blog where I was bitching and moaning about Family House, don't be alarmed, I'll live. I'll adapt. This experience is not about me anyway.
Thursday, October 27, 2011
Just the facts ma'am
After waiting almost 2 days, our transplant coordinator FINALLY called today. He had a bunch to tell us. Thought I would share.
Lee is now active on the lung transplant list. Turns out Lee is pretty high on the list too. He's basically "in competition" with one other guy for new lungs. Kind of makes me want to find this guy and throw him down a flight of stairs. Too mean? Sorry, I can get competitive sometimes.
Anyway, Paul our transplant coordinator, told Lee he shouldn't have to wait too long. Within 3 months, but probably sooner.
We could get "the call" at any time, day or night. So we ask that unless it's an emergency, please do not call or text Lee. Want to keep the line open. When we do get the call, it's up to me to get him to the hospital, which luckily is just a few blocks away. ( one of the perks of being so close to the hospital ) Once we arrive, Lee will be whisked away for prep. That will take about 4 to 5 hours. During that time, I can hang out with him. I plan to take embarrassing photos of him. Then post them on Facebook! Or not.
False alarms are common. So don't be surprised if I tell you he's going in for surgery only to tell you later that the lungs couldn't be used after all. It happens.
If it turns out not to be a false alarm, then the surgery itself will take about 8 hours. While I wait, I'll post updates on Facebook and call our family and friends.
If all goes well after surgery, he'll stay in the hospital 3 to 4 weeks. We've heard that 6 weeks after the lung transplant, he'll then get the Fundoplication surgery on his esophagus. More time in the hospital. So all tolled, we'll be in Pittsburgh 2 to 3 months after the transplant. Again, if nothing goes wrong.
Lung transplants are the most difficult and dangerous transplants. And there is always the possibilty of rejection of the organs. Which is very common. Infections can pop up too. But we don't want infections. Simply put, they are bad.
Lee is now active on the lung transplant list. Turns out Lee is pretty high on the list too. He's basically "in competition" with one other guy for new lungs. Kind of makes me want to find this guy and throw him down a flight of stairs. Too mean? Sorry, I can get competitive sometimes.
Anyway, Paul our transplant coordinator, told Lee he shouldn't have to wait too long. Within 3 months, but probably sooner.
We could get "the call" at any time, day or night. So we ask that unless it's an emergency, please do not call or text Lee. Want to keep the line open. When we do get the call, it's up to me to get him to the hospital, which luckily is just a few blocks away. ( one of the perks of being so close to the hospital ) Once we arrive, Lee will be whisked away for prep. That will take about 4 to 5 hours. During that time, I can hang out with him. I plan to take embarrassing photos of him. Then post them on Facebook! Or not.
False alarms are common. So don't be surprised if I tell you he's going in for surgery only to tell you later that the lungs couldn't be used after all. It happens.
If it turns out not to be a false alarm, then the surgery itself will take about 8 hours. While I wait, I'll post updates on Facebook and call our family and friends.
If all goes well after surgery, he'll stay in the hospital 3 to 4 weeks. We've heard that 6 weeks after the lung transplant, he'll then get the Fundoplication surgery on his esophagus. More time in the hospital. So all tolled, we'll be in Pittsburgh 2 to 3 months after the transplant. Again, if nothing goes wrong.
Lung transplants are the most difficult and dangerous transplants. And there is always the possibilty of rejection of the organs. Which is very common. Infections can pop up too. But we don't want infections. Simply put, they are bad.
Eric Idle and The Holy Grail
Come on everyone, sing along with me!
"Always look on the bright side of life...Always look on the light side of life...
If life seems jolly rotten
There's something you've forgotten
And that's to laugh and smile and dance and sing.
When you're feeling in the dumps
Don't be silly chumps
Just purse your lips and whistle - that's the thing
And always look on the bright side of life..."
Thanks Eric Idle. I needed that.
So......I've been trying, really trying, to look on the bright side of life. It's been a rocky start to our stay here in the big city of Pittsburgh. Lots of little things that add up to one big annoyance for me. Call me prissy, call me demanding, I know what I like and I know what I can put up with. A 9 minute walk to my car in 42 degrees and rain is NOT something I want to put up with every day. Especially now that winter is fast approaching. Plus there is no way Lee can walk that far. Yep, we can't park on the Family House premises. Have to use one of the hospital parking decks. So I talked with one of the staff here, explained the issue, and she told me we can use one of the handicapped spaces out front( we have a placard for the car )but they could be taken. Basically, it's a crap shoot. fabulous.
This place we're residing is odd. I guess it's really a hospitality house for the University of Pittsburgh Medical Center or UPMC. There are 4 near the hospital and this one used to be racket ball courts and lockers. The showers are what you might find in a gym. We got the "suite" at this location. Two rooms with two bathrooms. The bedrooms are sparely decorated with furniture that screams the 1970's. Lots of faux wood. And the rooms are quite small. I can't imagine if we only had one room. I would hang myself...in one of the creepy bathrooms. Oh yeah, we sleep in twin beds with pillows as flat as pancakes. Or hotcakes as they call them here.
The lobby, the communal kitchen, the laundry room and the fitness room ( 1 treadmill and a stairmaster....more like a fitness closet ) are on the 8th floor. If you're like me and value privacy, then this is NOT the place to stay. The staff and volunteers are all very nice and helpful but some of the residents are dicks. Some are not.
The only things here that are free are coffee and tickets to a few museums. Otherwise, we're going out for lunch and dinner every day. I just don't feel like cooking in the communal kitchen. yet.
Did I mention that it's 75$ a night and not 60$ as was advertised on their website? More expensive than I thought.
Alright, alright. Enough bitching. Let me point out something good, actually something great. We're here so Lee can get new lungs, The Holy Grail. That's really all that's important. We can learn to live with these small annoyances, I hope.
"Always look on the bright side of life...Always look on the light side of life...
If life seems jolly rotten
There's something you've forgotten
And that's to laugh and smile and dance and sing.
When you're feeling in the dumps
Don't be silly chumps
Just purse your lips and whistle - that's the thing
And always look on the bright side of life..."
Thanks Eric Idle. I needed that.
So......I've been trying, really trying, to look on the bright side of life. It's been a rocky start to our stay here in the big city of Pittsburgh. Lots of little things that add up to one big annoyance for me. Call me prissy, call me demanding, I know what I like and I know what I can put up with. A 9 minute walk to my car in 42 degrees and rain is NOT something I want to put up with every day. Especially now that winter is fast approaching. Plus there is no way Lee can walk that far. Yep, we can't park on the Family House premises. Have to use one of the hospital parking decks. So I talked with one of the staff here, explained the issue, and she told me we can use one of the handicapped spaces out front( we have a placard for the car )but they could be taken. Basically, it's a crap shoot. fabulous.
This place we're residing is odd. I guess it's really a hospitality house for the University of Pittsburgh Medical Center or UPMC. There are 4 near the hospital and this one used to be racket ball courts and lockers. The showers are what you might find in a gym. We got the "suite" at this location. Two rooms with two bathrooms. The bedrooms are sparely decorated with furniture that screams the 1970's. Lots of faux wood. And the rooms are quite small. I can't imagine if we only had one room. I would hang myself...in one of the creepy bathrooms. Oh yeah, we sleep in twin beds with pillows as flat as pancakes. Or hotcakes as they call them here.
The lobby, the communal kitchen, the laundry room and the fitness room ( 1 treadmill and a stairmaster....more like a fitness closet ) are on the 8th floor. If you're like me and value privacy, then this is NOT the place to stay. The staff and volunteers are all very nice and helpful but some of the residents are dicks. Some are not.
The only things here that are free are coffee and tickets to a few museums. Otherwise, we're going out for lunch and dinner every day. I just don't feel like cooking in the communal kitchen. yet.
Did I mention that it's 75$ a night and not 60$ as was advertised on their website? More expensive than I thought.
Alright, alright. Enough bitching. Let me point out something good, actually something great. We're here so Lee can get new lungs, The Holy Grail. That's really all that's important. We can learn to live with these small annoyances, I hope.
Tuesday, October 25, 2011
The sound of music
Our Sunday evening ended as it had began, with smiles and hugs and well wishes. The Lungs for Lee benefit show was simply wonderful. Our musician friends serenaded Lee and surrounded him with lyrical love. He couldn't have been happier. Well, maybe if he had new lungs.
For those of you who couldn't be there...we sold Lungs For Lee tees ( the one I was wearing had been bedazzled with rhinestones by yours truly ) gave out info on Pulmonary Fibrosis and organ donation and sold raffle tickets to win a fantastic guitar. Lee and I did our best to speak with as many people as we could. Lee would later describe it, "like being at your wedding and trying to talk with every one of your guests." And Lee was able to stay the entire time. Which was quite a feat. It was all the love and compassion and kindness that kept him going. But it did take him a solid 3 days to recover.
There was an odd element to the evening. One that bothered Lee a bit. The Blind Tiger was filled with people who had come out to support a man who needs new lungs to survive. Yet about a third of them were outside smoking. Smoking and lung disease, not a particularly good mix. He and I live a life filled with lung health do's and don'ts, mostly don'ts, so we couldn't help but be perplexed by it.
Smoking aside, the night was truly fantastic. Watching our friends on stage belting out songs all in the name of Lee was awesome. And Lee even made it onstage with Ronnie Levels and His Genius Band to sing a Big Star song, Thank You Friends. An obvious thank you to everyone for their support during this difficult time in his life.
For those of you who couldn't be there...we sold Lungs For Lee tees ( the one I was wearing had been bedazzled with rhinestones by yours truly ) gave out info on Pulmonary Fibrosis and organ donation and sold raffle tickets to win a fantastic guitar. Lee and I did our best to speak with as many people as we could. Lee would later describe it, "like being at your wedding and trying to talk with every one of your guests." And Lee was able to stay the entire time. Which was quite a feat. It was all the love and compassion and kindness that kept him going. But it did take him a solid 3 days to recover.
There was an odd element to the evening. One that bothered Lee a bit. The Blind Tiger was filled with people who had come out to support a man who needs new lungs to survive. Yet about a third of them were outside smoking. Smoking and lung disease, not a particularly good mix. He and I live a life filled with lung health do's and don'ts, mostly don'ts, so we couldn't help but be perplexed by it.
Smoking aside, the night was truly fantastic. Watching our friends on stage belting out songs all in the name of Lee was awesome. And Lee even made it onstage with Ronnie Levels and His Genius Band to sing a Big Star song, Thank You Friends. An obvious thank you to everyone for their support during this difficult time in his life.
Wednesday, October 12, 2011
Time flies
The clock is ticking. We've now got less than 2 weeks before the temporary relocation to Pittsburgh. I have a hundred and one things to do. Most of which only Lee or I can take care of. Otherwise, I'd be calling our friends and family to get the hell over here.
As I walked through the college campus to the radio station today, wearing my Star Trek The Next Generation tee and carrying my IPAD, I felt like a student again. For a brief moment, I felt young again. But then, just as quickly as that feeling had come, it left. And I giggled. After all, I was over 20 years older than the kids around me. And I was getting ready to talk about a great cause for a serious situation. It was a strange but wonderful moment. One I wished had lasted much longer.
For those of you who didn't get to listen to the shows, Turtle, Lonnie and I were promoting this weekends benefit concert for Lee. Of course, I also tried to throw in a little education about Pulmonary Fibrosis too. It bums me out that I won't be here to help spread the word on future benefits for Lee as I have no problem being on the radio or TV or whatever. I don't know a lot about a lot of subjects but Lee and Pulmonary Fibrosis I know.
Several people have asked about our housing situation and/or have suggested renting an apartment while we are in Pittsburgh. I gotta be honest, it would be more trouble than it's worth. We're only taking the bare necessities with us and would prefer spending a bit more money on safety, a shuttle service, close proximity to the hospital, free meals every now and then, a fitness room and a maid. Apartments can't give us those things. But Family House and Residence Inn can. Plus I just have WAY too much to worry about. Trying to make life easier.
Even though we'll be far from our home and living in hotels, we'll have family and friends visiting from time to time. My Mom is coming up sometime in Dec., and maybe a few friends for New Years. One of my oldest girlfriends lives in Philadelphia and is planning on at least 2 trips to see us. Time will fly by.
As I walked through the college campus to the radio station today, wearing my Star Trek The Next Generation tee and carrying my IPAD, I felt like a student again. For a brief moment, I felt young again. But then, just as quickly as that feeling had come, it left. And I giggled. After all, I was over 20 years older than the kids around me. And I was getting ready to talk about a great cause for a serious situation. It was a strange but wonderful moment. One I wished had lasted much longer.
For those of you who didn't get to listen to the shows, Turtle, Lonnie and I were promoting this weekends benefit concert for Lee. Of course, I also tried to throw in a little education about Pulmonary Fibrosis too. It bums me out that I won't be here to help spread the word on future benefits for Lee as I have no problem being on the radio or TV or whatever. I don't know a lot about a lot of subjects but Lee and Pulmonary Fibrosis I know.
Several people have asked about our housing situation and/or have suggested renting an apartment while we are in Pittsburgh. I gotta be honest, it would be more trouble than it's worth. We're only taking the bare necessities with us and would prefer spending a bit more money on safety, a shuttle service, close proximity to the hospital, free meals every now and then, a fitness room and a maid. Apartments can't give us those things. But Family House and Residence Inn can. Plus I just have WAY too much to worry about. Trying to make life easier.
Even though we'll be far from our home and living in hotels, we'll have family and friends visiting from time to time. My Mom is coming up sometime in Dec., and maybe a few friends for New Years. One of my oldest girlfriends lives in Philadelphia and is planning on at least 2 trips to see us. Time will fly by.
Tuesday, October 4, 2011
It's the final countdown
Well folks, it's official, we're leaving for our temporary move to Pittsburgh on October 25th. Just days before my favorite holiday, Halloween. To my friends, I'm sorry I won't be there to host my annual Halloween party. But I promise to make next years twice as fab!
We're driving up so we can have my car to get around the city when we want. And yes, we've got a place to stay. At least for awhile. We're staying at Family House. It's for people just like Lee and I, patients and their caregivers. People who are waiting for a transplant, or another specialized hospital treatment. And it's only 60$ a night. Believe me, that's the best we could find that fit our needs. The plan is to move to the Residence Inn after Lee gets the transplant. Of course, that could change. See, Family House is a great choice but there a few things about it we're not too keen on. Like we can't eat or drink in the rooms. They have a communal kitchen area where you dine. Maybe you're thinking, that's no big deal. But it is to us. There are MANY times Lee doesn't feel well and decides to either stay in bed or rest in the living room. You know how it is when you're not feeling good, you want privacy, and we'll have very little. But we know that our stay will be temporary and we know that it's the right the thing to do. Plus the price is reasonable.
The positives. Family House offers free shuttle service to the hospital. Which will definitely come in handy. Plus on site laundry facilities.
My Mom will house and pet sit for us while we are gone, however long that is. She's starting her house sitter training this week. Tons of things she needs to know before we leave. And until we leave I'll be cleaning and organizing the house. Some people "winterize" their homes, I'll be "housesitterizing" ours.
Here's the real sucky part, we won't be able to take any of our pets with us. We don't have children but we have furry companions. And they mean the world to us. It's going to be very difficult without them. All of them have wonderful little personalities. There will be less sunshine in my life while we are gone.
Perhaps you're asking, what are you going to do while you're waiting for "the call?" Well, Lee is taking his Nook with him. He FINALLY gets to use it! Plus he's looking into buying an IPOD so he can listen to music, which is something he does every day, many times a day. I am planning on possibly taking an ice skating lesson or two. Something I've wanted to do since I was a little girl. Pittsburgh has an outdoor ice skating rink downtown. Supposedly bigger than Rockefeller Center. Pittsburgh also has a glass center. Might take a class or two there. Yep, for years I've wanted to learn how to create blown glass art. Every Summer for the past 8 or 10 years, I've tried to figure out how I could get accepted to and pay for a semester at Penland. (located in the NC mountains) But it was VERY expensive and you had to stay in a dorm for weeks or even months. Anyway, Pittsburgh offers 2 hour workshops. Less time and loads less cash. Plus there are several museums we can visit, a botanical garden, the national aviary, a zoo...we'll be fine.
Our hope is that friends and family will visit us. My Mom is already planning on flying up during Christmas. Crazy to think we'll be celebrating all the major holidays in a strange city. But you know, I'm kind of looking forward to the experience. It will be like a vacation, except that Lee has to undergo a MAJOR life altering surgery at some point. Let's call it "transplancation."
We're driving up so we can have my car to get around the city when we want. And yes, we've got a place to stay. At least for awhile. We're staying at Family House. It's for people just like Lee and I, patients and their caregivers. People who are waiting for a transplant, or another specialized hospital treatment. And it's only 60$ a night. Believe me, that's the best we could find that fit our needs. The plan is to move to the Residence Inn after Lee gets the transplant. Of course, that could change. See, Family House is a great choice but there a few things about it we're not too keen on. Like we can't eat or drink in the rooms. They have a communal kitchen area where you dine. Maybe you're thinking, that's no big deal. But it is to us. There are MANY times Lee doesn't feel well and decides to either stay in bed or rest in the living room. You know how it is when you're not feeling good, you want privacy, and we'll have very little. But we know that our stay will be temporary and we know that it's the right the thing to do. Plus the price is reasonable.
The positives. Family House offers free shuttle service to the hospital. Which will definitely come in handy. Plus on site laundry facilities.
My Mom will house and pet sit for us while we are gone, however long that is. She's starting her house sitter training this week. Tons of things she needs to know before we leave. And until we leave I'll be cleaning and organizing the house. Some people "winterize" their homes, I'll be "housesitterizing" ours.
Here's the real sucky part, we won't be able to take any of our pets with us. We don't have children but we have furry companions. And they mean the world to us. It's going to be very difficult without them. All of them have wonderful little personalities. There will be less sunshine in my life while we are gone.
Perhaps you're asking, what are you going to do while you're waiting for "the call?" Well, Lee is taking his Nook with him. He FINALLY gets to use it! Plus he's looking into buying an IPOD so he can listen to music, which is something he does every day, many times a day. I am planning on possibly taking an ice skating lesson or two. Something I've wanted to do since I was a little girl. Pittsburgh has an outdoor ice skating rink downtown. Supposedly bigger than Rockefeller Center. Pittsburgh also has a glass center. Might take a class or two there. Yep, for years I've wanted to learn how to create blown glass art. Every Summer for the past 8 or 10 years, I've tried to figure out how I could get accepted to and pay for a semester at Penland. (located in the NC mountains) But it was VERY expensive and you had to stay in a dorm for weeks or even months. Anyway, Pittsburgh offers 2 hour workshops. Less time and loads less cash. Plus there are several museums we can visit, a botanical garden, the national aviary, a zoo...we'll be fine.
Our hope is that friends and family will visit us. My Mom is already planning on flying up during Christmas. Crazy to think we'll be celebrating all the major holidays in a strange city. But you know, I'm kind of looking forward to the experience. It will be like a vacation, except that Lee has to undergo a MAJOR life altering surgery at some point. Let's call it "transplancation."
Thursday, September 22, 2011
Lung Transplantation...more info
Several people have asked this question, "when is the surgery?" This got me thinking, maybe I should explain a few things. I mean, a lot of this we didn't know till we HAD to know.
Lung transplants can not be scheduled like other surgeries. Put bluntly, Lee is waiting for someone to die in order for him to get new lungs. It's an incredibly sad thought, that someones life will end so that Lee can live. How that donor will die, we won't know. But when we get the call that lungs are available and we're celebrating, a family somewhere is grieving.
The nature of the surgery requires us, the patient and caregiver, to be on call 24/7. Because organs can only be preserved for a limited amount of time, we have to be in Pittsburgh and ready for the operation 4 hours after we're given the green light. That's not a lot of time.
This is why we can't use Angel Flight and other services like them. They only fly for scheduled appointments and often require 5 to 10 days notice. As as you can tell, nothing about lung transplantation is scheduled. Or easy.
We're still researching our transportation options. And I've even contacted our UPMC transplant coordinator and social services worker to ask more questions.
And of course as many of you already know, we've got our first benefit/fundraiser on Sunday Oct 16th at The Blind Tiger in Greensboro NC. Should be a fab show! Hope to see you all there!
Lung transplants can not be scheduled like other surgeries. Put bluntly, Lee is waiting for someone to die in order for him to get new lungs. It's an incredibly sad thought, that someones life will end so that Lee can live. How that donor will die, we won't know. But when we get the call that lungs are available and we're celebrating, a family somewhere is grieving.
The nature of the surgery requires us, the patient and caregiver, to be on call 24/7. Because organs can only be preserved for a limited amount of time, we have to be in Pittsburgh and ready for the operation 4 hours after we're given the green light. That's not a lot of time.
This is why we can't use Angel Flight and other services like them. They only fly for scheduled appointments and often require 5 to 10 days notice. As as you can tell, nothing about lung transplantation is scheduled. Or easy.
We're still researching our transportation options. And I've even contacted our UPMC transplant coordinator and social services worker to ask more questions.
And of course as many of you already know, we've got our first benefit/fundraiser on Sunday Oct 16th at The Blind Tiger in Greensboro NC. Should be a fab show! Hope to see you all there!
Wednesday, September 21, 2011
More waiting...and big decisions to make
Here's an update for those of you who are interested in where we are in the transplant process.
Two weeks after getting the news that Lee was accepted into the lung transplant program at UPMC, we are still waiting on approval from the insurance company. Which quite frankly is fine with me, as we aren't much closer to making some key decisions.
The first being, to relocate or not to relocate. We've recently been told by our transplant coordinator that if we do temporarily move to Pittsburgh, we might be waiting as long as 6 months to get the call that lungs are available. Lee's "score" is good, which means while he needs a transplant, he's not in a desperate situation. He's not on a ventilator or close to death in other words.
On the other hand, if we wait here and hire an air ambulance or charter a plane to get us up to Pittsburgh when lungs are available, we could easily spend 5,000 or 10,000$. And what if we get a "false alarm?" Meaning the hospital tells us they have lungs ready, so we get all the way up there and for whatever reason the lungs are deemed unusable. Then what? We're out of a shit load of cash and have to come home and wait again.
And, well we just don't have the funds to do either in the next month or two. I can't tell you how much this sucks. It's not like we need a few hundred dollars, we're talking a heck of
a lot more. Enough to buy a fancy car. Enough to take a 6 month trip to Australia. Enough to buy a house.
The good news... Our spirits are still high. We remain positive. We have wonderful friends and family who are helping in all sorts of ways. The future is just a little fuzzy right now. But we'll be ok.
Two weeks after getting the news that Lee was accepted into the lung transplant program at UPMC, we are still waiting on approval from the insurance company. Which quite frankly is fine with me, as we aren't much closer to making some key decisions.
The first being, to relocate or not to relocate. We've recently been told by our transplant coordinator that if we do temporarily move to Pittsburgh, we might be waiting as long as 6 months to get the call that lungs are available. Lee's "score" is good, which means while he needs a transplant, he's not in a desperate situation. He's not on a ventilator or close to death in other words.
On the other hand, if we wait here and hire an air ambulance or charter a plane to get us up to Pittsburgh when lungs are available, we could easily spend 5,000 or 10,000$. And what if we get a "false alarm?" Meaning the hospital tells us they have lungs ready, so we get all the way up there and for whatever reason the lungs are deemed unusable. Then what? We're out of a shit load of cash and have to come home and wait again.
And, well we just don't have the funds to do either in the next month or two. I can't tell you how much this sucks. It's not like we need a few hundred dollars, we're talking a heck of
a lot more. Enough to buy a fancy car. Enough to take a 6 month trip to Australia. Enough to buy a house.
The good news... Our spirits are still high. We remain positive. We have wonderful friends and family who are helping in all sorts of ways. The future is just a little fuzzy right now. But we'll be ok.
Saturday, September 10, 2011
Good Day Sunshine
YES. Wow, wasn't sure we'd ever hear that. But here we are with a firm yes.
Since Tuesday, I've been in high speed. Filling out applications, researching websites, creating a Facebook page for Lee, ( almost done ) looking at our housing options, trying to figure out how we're gonna pay for it all...I've been very busy.
Here's where we are:
* Waiting for insurance to approve the transplant. Could be another 2 - 4 weeks. Until then, Lee is NOT on a waiting list for lungs.
* Several friends are putting together a benefit concert for Lee on Oct. 16th at The Blind Tiger. The bands and band line up have not been finalized. As soon as I have details, you'll know.
* I'm creating a Facebook page called Lungs for Lee. It isn't done yet but should be by Monday. This page will serve as a first point of contact for all of you on Facebook. I'll keep you up to date on benefit shows, other events etc. I also encourage you to send messages to either myself or Lee on this page.
* I've applied and was accepted for assistance from the NTAF. ( National Transplant Assistance Fund ) On that site will be a page about Lee and his illness. My goal is to have ONE place where our friends and family can go to donate money if they wish. Should have it up by early next week. http://www.ntafund.org/
* Researching air ambulances - ongoing process. AngelFlight's regional office Airlift Hope only flys for scheduled appointments. And transplants are not scheduled. We need someone on call who can get us to Pittsburgh within 4 hours after receiving "the call." Air Ambulances are not free like Angel Flight so that sucks. But it's worth looking into.
* Housing - we'll stay at The Residence Inn if a room is available. They are the only extended stay hotel close to the hospital. And I would want to be close by. We stayed there during the evaluation and liked it.
The big dilemma we're facing is whether to pick an air ambulance and pay the 6,000$, 8,000$ or 10,000$ and stay here in Greensboro until we get the call that lungs are available OR relocate to Pittsburgh and stay in the hotel for what could be months. Staying at the hotel would be approximately 2800$ for just ONE month. What if lungs aren't available till December or January? Then we'd be paying for about 3 or 4 months of hotel bills which would be about the same, or a little cheaper, than arranging for an air ambulance.
Right now, we don't know the exact amount of time we'd be in Pittsburgh AFTER the transplant. His Endoscopist may try another surgery on his esophagus and we aren't sure what's involved just yet. Recovery time is usually, if there are no complications, around 2 months give or take a few weeks.
Since Tuesday, I've been in high speed. Filling out applications, researching websites, creating a Facebook page for Lee, ( almost done ) looking at our housing options, trying to figure out how we're gonna pay for it all...I've been very busy.
Here's where we are:
* Waiting for insurance to approve the transplant. Could be another 2 - 4 weeks. Until then, Lee is NOT on a waiting list for lungs.
* Several friends are putting together a benefit concert for Lee on Oct. 16th at The Blind Tiger. The bands and band line up have not been finalized. As soon as I have details, you'll know.
* I'm creating a Facebook page called Lungs for Lee. It isn't done yet but should be by Monday. This page will serve as a first point of contact for all of you on Facebook. I'll keep you up to date on benefit shows, other events etc. I also encourage you to send messages to either myself or Lee on this page.
* I've applied and was accepted for assistance from the NTAF. ( National Transplant Assistance Fund ) On that site will be a page about Lee and his illness. My goal is to have ONE place where our friends and family can go to donate money if they wish. Should have it up by early next week. http://www.ntafund.org/
* Researching air ambulances - ongoing process. AngelFlight's regional office Airlift Hope only flys for scheduled appointments. And transplants are not scheduled. We need someone on call who can get us to Pittsburgh within 4 hours after receiving "the call." Air Ambulances are not free like Angel Flight so that sucks. But it's worth looking into.
* Housing - we'll stay at The Residence Inn if a room is available. They are the only extended stay hotel close to the hospital. And I would want to be close by. We stayed there during the evaluation and liked it.
The big dilemma we're facing is whether to pick an air ambulance and pay the 6,000$, 8,000$ or 10,000$ and stay here in Greensboro until we get the call that lungs are available OR relocate to Pittsburgh and stay in the hotel for what could be months. Staying at the hotel would be approximately 2800$ for just ONE month. What if lungs aren't available till December or January? Then we'd be paying for about 3 or 4 months of hotel bills which would be about the same, or a little cheaper, than arranging for an air ambulance.
Right now, we don't know the exact amount of time we'd be in Pittsburgh AFTER the transplant. His Endoscopist may try another surgery on his esophagus and we aren't sure what's involved just yet. Recovery time is usually, if there are no complications, around 2 months give or take a few weeks.
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