So today I went back to the asthma specialist who might do the lung surgery. I was supposed to see her last week but she had to cancel. I did go in and get the testing done that she had ordered, a chest X-ray and a pulmonary function test, the full length version (it had been about 3 or 4 years so she wanted a baseline).
We reviewed those results and the results of the tweaks to my regimen. There was minor improvement, enough to be encouraging, for her anyway. I was less sure but she seemed pleased. I got excited thinking that maybe now we could talk surgery dates but no, not yet.
Apparently, and this was NOT made clear to me at our first visit, if I am approved for this surgery, I will be part of a research project. So, my next step is to meet with the research protocol nurse for, oh yay, more testing and screening. Those, according to the doctor, will be at their expense, not mine. The really awesome news? If I am approved, I don't pay for the surgery, they do. :) Although the procedure was approved by the FDA in 2010, most insurance companies are not covering it yet, so if I want the surgery, I need to meet the protocol requirements. Oh please, oh please, oh please!!!!
So, still no firm decision, much less a date of any kind, but slow progress forward. The research nurse had today off so I'm waiting to hear from her to set up an appointment. There's a part of me that wishes I had picked a doctor at a hospital closer to home. It's a 52 mile round trip, with traffic it can take up to 90 minutes to get there, and parking at the hospital is not cheap. Add in the time I miss at work for each appointment and it's rapidly getting expensive. But if I get the surgery, and the surgery works, it will be worth it.
in my last blog post about my lungs, I mentioned a 3D model that the doctor had showing asthmatic lungs versus normal lungs. I remembered to take a picture today.
I am, of course, the one on the far right, labeled "severe". See all those extra dark pink layers? That's the smooth muscle and the more asthmatic you are, the more of it you have. The surgery will burn away some of those excess layers, which should make my lungs less reactive and thus cause fewer flares and attacks.
So, more waiting, not something I've ever been good at. I'll update the blog as I know more.
We reviewed those results and the results of the tweaks to my regimen. There was minor improvement, enough to be encouraging, for her anyway. I was less sure but she seemed pleased. I got excited thinking that maybe now we could talk surgery dates but no, not yet.
Apparently, and this was NOT made clear to me at our first visit, if I am approved for this surgery, I will be part of a research project. So, my next step is to meet with the research protocol nurse for, oh yay, more testing and screening. Those, according to the doctor, will be at their expense, not mine. The really awesome news? If I am approved, I don't pay for the surgery, they do. :) Although the procedure was approved by the FDA in 2010, most insurance companies are not covering it yet, so if I want the surgery, I need to meet the protocol requirements. Oh please, oh please, oh please!!!!
So, still no firm decision, much less a date of any kind, but slow progress forward. The research nurse had today off so I'm waiting to hear from her to set up an appointment. There's a part of me that wishes I had picked a doctor at a hospital closer to home. It's a 52 mile round trip, with traffic it can take up to 90 minutes to get there, and parking at the hospital is not cheap. Add in the time I miss at work for each appointment and it's rapidly getting expensive. But if I get the surgery, and the surgery works, it will be worth it.
in my last blog post about my lungs, I mentioned a 3D model that the doctor had showing asthmatic lungs versus normal lungs. I remembered to take a picture today.
I am, of course, the one on the far right, labeled "severe". See all those extra dark pink layers? That's the smooth muscle and the more asthmatic you are, the more of it you have. The surgery will burn away some of those excess layers, which should make my lungs less reactive and thus cause fewer flares and attacks.
So, more waiting, not something I've ever been good at. I'll update the blog as I know more.
Good luck!!!!!!!!!!!!!!!!!
ReplyDeleteIt's a long haul. I guess that want to make sure that all the i's are dotted and all the t's are crossed since you would be part of a research study.
ReplyDeleteSo far, you're doing fine.
Yeah, I get that they need to be thorough, and it's a good thing, but I'm really impatient. :D
DeleteAck! That kicks rocks, Bea. I am so sorry progress is so slow. But at least it is forward moving if only a little. Keeping my fingers crossed for you. :)
ReplyDeleteMy fingers are crossed for you babe, paying for that would be horrendous. *hugs*
ReplyDeleteThanks Kendra, thanks Tammy.
ReplyDeleteGood Luck Bea..i hope it all works out!
ReplyDeleteThanks Kimba :)
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