We're going home.
Just shy of 6 months, we've been told we can leave. Well, truth be told, I HAD to basically threaten Frank, our post transplant coordinator, in order for him to tell us we got the green light. The doctors and Frank we're basically dicking around, not giving us any concrete answers. And yesterday, I'd had it. Lee passed the swallow tests, his Brochoscopy was good, his biopsies were negative...what the hell were they waiting on?!
Ok, now starts the frenzy of cleaning and packing and making sure Lee has enough meds to get us home and I STILL have to send out 2 resumes this week...blah blah blah.
But here's where I have to get a little sappy.
While Lee and I are both thrilled we're going back to NC, we leave behind friends, you might even call them family. An everchanging family made up of diverse backgrounds, cultures, religions and beliefs. People who could understand; who could relate to what Lee and I were dealing with, even if we didn't speak the same language. We sought comfort in one another by sharing stories and experiences and by doing so, learned a great deal. All of us far from home and homesick, patiently waiting on a life saving transplant, hoping we can afford it all, and trying our best to stay sane.
It seems to me that people like us belong to a small group. The unlucky ones, the so called high risk patients, who have to move to another city or state or country to seek medical attention. And often wait many many months, even years in some cases, for an organ.
But while we waited, we conversed, we dined together, we shared knowledge, we even laughed.
And so it is with a sad heart, I say goodbye to these friends. I wish the best for all of them. And I truly hope we cross paths again, but this time, maybe under happier circumstances.
Wednesday, April 11, 2012
Monday, March 26, 2012
Running up that hill
Most of you read my daily updates on Facebook, at least I think you do, which I certainly appreciate. But I don't know if you're getting the full picture. The life-after-transplant-but-still-in-Pittsburgh picture. So I thought it was time to dig a little deeper and show you the seedier side of posttransplantland.
The life of a post transplant patient is not an easy one, especially since it's been less than two months since the surgery. The life of a caregiver is not an easy one either. We both stay busy.
Busy? YES. And I'm not talking about going to museums and seeing the sights kind of busy either.
For Lee, he is required to do exercises. Not just his breathing and swallowing exercises but he needs to move. Walk, walk and walk. He shouldn't sit or lay around too much. Now when he takes long walks, he does get tired and must sit down to rest often but he's out there doing what he's gotta do. And never you worry, he takes all the necessary precautions to stay germ free. He wears a mask and doesn't touch too many things, like doorknobs or handrails. They're gross.
For me, my main focus is still caregiving. Just different than before the transplant. I administer his meds twice a day twelve hours apart. I also give him a daily insulin injection. (I know, me with a needle!) He gets a 1 ounce dose of protein once a day too. Right now, he is taking 12 different medications. 4 of which must be refridgerated. (everything from a blood thinner to a pain med to an anti fungal to an anti rejection med) So we had a small fridge put in our room. All of the meds must be either crushed or measured precisely then mixed together to be given through his feeding tube. The tube is actually separated into two smaller tubes, one for liquid nutrition and the other for meds.
Lee is still not eating or drinking anything. He is allowed to suck on Dum Dums per the Speach docs orders and he sucks on ice but that's it. It's brutal.
His liquid nutrition comes in the form of 8 ounce cans. It's contiuously pumping a bland, beige colored, no flavored goo into his belly. Currently he uses between 8 to 9 cans during a 24 hour period. We have one of those coat rack looking doo hickies to suspend the bag on and it must be completely changed every 24 hours. Sexy isn't it?
Then there's the laundry (which I can NEVER catch up with ) cleaning (our rooms, which again I always seem to fall behind on) grocery shopping for me, cooking, washing dishes, picking up meds, calling docs, taking Lee to various appointments. Plus I must thouroughly clean all the measuring cups, mixing cups, syringes, and tablet crusher after each use. Whew. I got tired just typing all that.
As I've mentioned before, being an organ recipient isn't like most other post surgery lives. The patients, as well as the caregivers, have to change their ways of thinking. Even change habits. And jobs. And hobbies.
If Lee gets to feeling well enough to work again, he can't be a teacher or a nurse or work in any field that might compromise his health. Remember, he will be on immunosuppressant medications for the rest of this life. It sucks but it's all for a good reason.
Once we get home, Lee can't cut the grass or rake leaves, due to to Aspergillus. Kind of thinking he can't go into our basement ever again. For those of you who have never been in our basement, it's kind of scarey. We desperately need to improve the drainage down there. Have a little water damage. 'nuff said. And once he's back to eating and drinking, he shouldn't drink from water fountains, because of the stagnant water and bacteria issue. And food bummer, he can no longer eat grapefruit, because it can alter the affects of a few of his meds.
And being around sick people, forget about it. That's a biggie. If you want to hang out with Lee but are sick, stay away. Period. If you believe you MIGHT be sick, then don't even think about getting near Lee.
Another biggie, smokers. If you want to hang out with Lee, you can't smoke around him. Not even in our backyard. He has what the doctors refer to as "baby lungs". They are in the early stages of being used by Lee, they haven't reached their full potential. So we gotta take extra special good care of them.
Based on what the doctors and home health care nurses have told us, the lungs probably came from a young person. Possibly a teenager or person in their twenties. So we're going to treat them with the utmost respect. And you should too.
There are a ton of other restrictions and guidelines but I don't want to bore you. I'm sure I do that enough already.
It takes a strong person to adjust mentally to the restrictions. Thankfully Lee fits the bill. However, don't be fooled. He has moments, sometimes hours or afternoons when he gets frustrated or even depressed. His mind wants to do more, his body is not yet ready. And he desperately wants to go home. Me too.
And as a caregiver, I have my worries, my concerns, my stress. Not just about Lee but about all my responsibilities. I do my best to keep my chin up. I look for cool places to visit. But at the end of the day, it can still be very tough. Don't get me wrong. I really like Pittsburgh. My love of big cities comes from growing up in one. The museums and culture and of course the international cuisine. But shit, I gotta get a job. And I miss my cats.
Then there is the constant negative energy here at Family House. It's no ones fault. The patients are sick and their caregivers are stressed. Everyone wants to talk about their why they are here, which is good because we've learned a great deal from others. We recently met a lady who had a double hand transplant.(A DOUBLE HAND TRANSPLANT!) And luckily we've met some wonderful people here. My hope is that we stay in touch with them long after we leave.
But sometimes we HAVE to get the hell outta here. We have to go outside and smell the roses. So those posts and photos of Lee and I trolling the city for exciting and neat places...those few moments are our escape. We can pretend, sort of, that we're here on vacation just hanging out. I'd love to tell you that we're having a blast up here in Pittsburgh but that's really not the case. We're just trying to make the best of an unusual sitution.
The road to wellness for Lee is a long one. It takes anywhere from 6 months to a year for the new lungs to reach their full potential and for the body to heal. He may face lung infections and maybe a rejection or two along the way but that's just par for the course.
The life of a post transplant patient is not an easy one, especially since it's been less than two months since the surgery. The life of a caregiver is not an easy one either. We both stay busy.
Busy? YES. And I'm not talking about going to museums and seeing the sights kind of busy either.
For Lee, he is required to do exercises. Not just his breathing and swallowing exercises but he needs to move. Walk, walk and walk. He shouldn't sit or lay around too much. Now when he takes long walks, he does get tired and must sit down to rest often but he's out there doing what he's gotta do. And never you worry, he takes all the necessary precautions to stay germ free. He wears a mask and doesn't touch too many things, like doorknobs or handrails. They're gross.
For me, my main focus is still caregiving. Just different than before the transplant. I administer his meds twice a day twelve hours apart. I also give him a daily insulin injection. (I know, me with a needle!) He gets a 1 ounce dose of protein once a day too. Right now, he is taking 12 different medications. 4 of which must be refridgerated. (everything from a blood thinner to a pain med to an anti fungal to an anti rejection med) So we had a small fridge put in our room. All of the meds must be either crushed or measured precisely then mixed together to be given through his feeding tube. The tube is actually separated into two smaller tubes, one for liquid nutrition and the other for meds.
Lee is still not eating or drinking anything. He is allowed to suck on Dum Dums per the Speach docs orders and he sucks on ice but that's it. It's brutal.
His liquid nutrition comes in the form of 8 ounce cans. It's contiuously pumping a bland, beige colored, no flavored goo into his belly. Currently he uses between 8 to 9 cans during a 24 hour period. We have one of those coat rack looking doo hickies to suspend the bag on and it must be completely changed every 24 hours. Sexy isn't it?
Then there's the laundry (which I can NEVER catch up with ) cleaning (our rooms, which again I always seem to fall behind on) grocery shopping for me, cooking, washing dishes, picking up meds, calling docs, taking Lee to various appointments. Plus I must thouroughly clean all the measuring cups, mixing cups, syringes, and tablet crusher after each use. Whew. I got tired just typing all that.
As I've mentioned before, being an organ recipient isn't like most other post surgery lives. The patients, as well as the caregivers, have to change their ways of thinking. Even change habits. And jobs. And hobbies.
If Lee gets to feeling well enough to work again, he can't be a teacher or a nurse or work in any field that might compromise his health. Remember, he will be on immunosuppressant medications for the rest of this life. It sucks but it's all for a good reason.
Once we get home, Lee can't cut the grass or rake leaves, due to to Aspergillus. Kind of thinking he can't go into our basement ever again. For those of you who have never been in our basement, it's kind of scarey. We desperately need to improve the drainage down there. Have a little water damage. 'nuff said. And once he's back to eating and drinking, he shouldn't drink from water fountains, because of the stagnant water and bacteria issue. And food bummer, he can no longer eat grapefruit, because it can alter the affects of a few of his meds.
And being around sick people, forget about it. That's a biggie. If you want to hang out with Lee but are sick, stay away. Period. If you believe you MIGHT be sick, then don't even think about getting near Lee.
Another biggie, smokers. If you want to hang out with Lee, you can't smoke around him. Not even in our backyard. He has what the doctors refer to as "baby lungs". They are in the early stages of being used by Lee, they haven't reached their full potential. So we gotta take extra special good care of them.
Based on what the doctors and home health care nurses have told us, the lungs probably came from a young person. Possibly a teenager or person in their twenties. So we're going to treat them with the utmost respect. And you should too.
There are a ton of other restrictions and guidelines but I don't want to bore you. I'm sure I do that enough already.
It takes a strong person to adjust mentally to the restrictions. Thankfully Lee fits the bill. However, don't be fooled. He has moments, sometimes hours or afternoons when he gets frustrated or even depressed. His mind wants to do more, his body is not yet ready. And he desperately wants to go home. Me too.
And as a caregiver, I have my worries, my concerns, my stress. Not just about Lee but about all my responsibilities. I do my best to keep my chin up. I look for cool places to visit. But at the end of the day, it can still be very tough. Don't get me wrong. I really like Pittsburgh. My love of big cities comes from growing up in one. The museums and culture and of course the international cuisine. But shit, I gotta get a job. And I miss my cats.
Then there is the constant negative energy here at Family House. It's no ones fault. The patients are sick and their caregivers are stressed. Everyone wants to talk about their why they are here, which is good because we've learned a great deal from others. We recently met a lady who had a double hand transplant.(A DOUBLE HAND TRANSPLANT!) And luckily we've met some wonderful people here. My hope is that we stay in touch with them long after we leave.
But sometimes we HAVE to get the hell outta here. We have to go outside and smell the roses. So those posts and photos of Lee and I trolling the city for exciting and neat places...those few moments are our escape. We can pretend, sort of, that we're here on vacation just hanging out. I'd love to tell you that we're having a blast up here in Pittsburgh but that's really not the case. We're just trying to make the best of an unusual sitution.
The road to wellness for Lee is a long one. It takes anywhere from 6 months to a year for the new lungs to reach their full potential and for the body to heal. He may face lung infections and maybe a rejection or two along the way but that's just par for the course.
Saturday, December 31, 2011
The long and winding road
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.
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.
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.
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