It’s been way too long since I posted to my blog. Been doing most of my updating via my asthma support group on Facebook.
So anyways, after 6 months of going around and around with the insurance company, they have finally agreed to pay for a full lung transplant evaluation. My appointment is scheduled for August 15th at Stanford. Not sure if Stanford will accept me right away as a transplant candidate ( I think I’m probably still at least 1-2 years out), but at least I’m in the system now and can have regular follow ups with them if need be.
There were several reasons we were having a hard time getting the insurance company to pay for this. The biggest hang up stemmed from the fact that the medical group that I belong to does not have a transplant evaluation program, hence I had to go “Out-of Network”. Most insurance companies will only cover out-of network consult expenses if you are doing so for a 2nd opinion. In my case, I was seeking a 1st opinion, but couldn’t get that opinion “within” my own medical group. Secondly, there’s a huge difference between a regular Pulmonologist and lung transplant Pulmonologist. In the insurance companies eyes, I already have a “Pulmonologist”, so why would I need to see another one out-of network for a transplant eval. Finally, there’s this kinda of vague unwritten rule that asthma is not an accepted qualifying diagnosis for lung transplant surgery, when indeed it is. Traditionally, asthma is not considered an ultimately fatal disease.. though often times it is. Very few asthmatics have ever been or ever will be transplanted, because unlike a patient with CF or PHT, it’s difficult to tell how long a severe asthmatic will live if they don’t get a transplant. Asthma for the most part, is controllable in which most of it’s sufferers live fairly normal lives. But then there are the weirdos like me out there whose lungs have been so scarred by years and years of severe exacerbations, that nothing really works anymore and we slowly ( or quickly) suffocate to death. I think in those rare situations, transplant should be an option.
Another consideration is the financial impact on everyone involved. My medical bills total nearly 3/4s of a million dollars a year, and it keeps going up. With the average cost of lung transplant at one million dollars plus, the insurance company would actually save money for every year that I survive after transplant.
In the end , and with lots of letter writing and recommendations from all my wonderful physicians, including Dr Sally Wenzel, we were able to convince the insurance company that a lung transplant evaluation at this time was indeed a reasonable request. Ultimately, it’s up to the lung transplant team at whatever institution I end up going through to determine whether or not I will eventually be a suitable candidate for transplant and/or whether the benefits would outweigh the risks of this last resort treatment option. If so, I hope the insurance company won’t add to the stress by making me jump through too many more hurdles. We’ll see what happens.
As a side note, I was just discharged on Friday from my 106th hospitalization for asthma and my FEV1 now ranges from 26-33%, a 10% drop in 2 years.