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.
Thursday, October 27, 2011
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."
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