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!
Thursday, September 22, 2011
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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