Lung Transplant Evaluation Approved.

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.

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  1. Zim says:

    I read Your earlier notes in this blog. And I was surprised, because first time I met with lung transplantation as treatment of asthma. I read about it in the context of cystic fibrosis (a few transplantations were made also in Poland, but it is still very rare), but not asthma. But – as my doctor says – people study by whole life 🙂
    I don’t have account in Facebook now, because of personal causes.
    May God bless You in this time.
    Greetings for You.

    • Stephen says:

      Hi Zim,

      Contrary to what you read on the internet, severe asthma IS a qualifying diagnosis for transplant,at least here in the US, but is rarely done because asthma is not considered a fatal disease.

      • Zim says:

        I’m not severe asthmatic, only moderate (as my doctors said) – but one of my doctor said me real story from the 80’s, the times of deepest communism in my coutry and also martial law. He told me that in hospitals and pharmacies there was simply almost nothing – for asthmatic there was only hydrocortisone in injections. It was really fatal for every asthmatic – severe, mild and moderate… My doctor told me story about one teenage girl with asthma, who was treated by this “only” medicine this time. She became so obese, that my doctor couldn’t make her next injection. One day he came to the dispatcher from emergency and said: “Perhaps we will come to this girl again” and his chief said: “We will not come to her”. “Why?” – my doctor asked. “Because she died” – told dispatcher.
        I wrote You this story just as testimony – we live in really good times! Sorry if it was too long.
        Reading Your blog I can learn and know something new.

  2. kerri says:

    Ah, glad to see you are visiting ye olde blog again ;). I miss having you around in the blogosphere.

    Happy that the insurance company is finally taking this step with you. Hang in there and stay outta that hospital, Mr. L!

    • Stephen says:

      Hi Ms L,

      I feel kinda feel obligated to document this process. There’s a lot of misinformation ,or just plain lack of information out there on this topic. Of course I’ll know a lot more as I get further into it. 🙂

  3. Fran says:

    Hey Steve,
    Just dropping by to see what’s up and new with you. Good luck with the evaluation. Hope it works out in your favour.

    • Stephen says:

      Wow, Hello Fran. Long time no see. Hope you’re well. I don’t blog as much as I should anymore. Have other interests now.

      Didn’t do Boston this year, kinda lost the desire. Even walking only 4 miles is tough now. Maybe I’ll be able to RUN someday 🙂

      Take care my friend!

  4. Steve Ferkau says:

    Hey BreathinStephen!!! BreathinSteven here… I’m so glad you leapt this hurdle – I’m sorry that it was a bit of a struggle, but I think we’ve both dealt with the insurance beaurocracy over the years – and this is a BIG request… Though, as you pointed out – it could and should be the most economically viable when things work out…

    I hope that your journey is as freaking amazing as mine has been… I hope you get to the point, like I have, where you worry about your lungs MUCH less (or in a completely different way…) And I hope yours amaze you like mine amaze me… I still think about it constantly – I’m still in awe – and it’s been over 12 years! And 12 years of the immunosuppressant drugs have gradually trashed my kidneys and I’d been in kidney failure for the last year plus… Two months ago, a beautiful girl who was a friend, neighbor and volleyball teammate of the girl whose lungs I breathe with, gave me one of her kidneys… Can you imagine?!?

    You take care, Steve… You KNOW I’m in your corner… I’ll be looking forward to bopping back to this blog and hearing what you’re doing with your beautiful, new lungs… I hope the evaluation goes smoothly. Evaluations can be a little frustrating at times – as you’re completing various tests, they flush out other concerns they have to evaluate, causing more tests… But you already know that story. You seem healthy in so many other respects – so I hope that helps you sail through this. And I hope your journey to and through transplant is as awesome as mine was… You’re in my thoughts…

    Love, Steve

    • Stephen says:

      Hey Stevie, Thanks always for the good vibes. You’re the only one who ever tells me about the positive stuff.

      You must have an angel on your shoulder. You gotta be the luckiest guy Ive ever known. I actually read about your Kidney transplant ( I forget where). There was a photo of you walking around the hospital with a big grin on your face…like it was no big deal to have a kidney transplant. Geeze, aren’t you ever in bad mood? lol
      I just discovered your post here on my blog. ( I dont check my blog very often anymore. Spend most of my time in my FB group.) Yeah, it’s been 2.5 years now since we started the transplant discussion. This is actually my 2nd eval. ( First one was at UCSF). The preliminary message that I’m getting from them, is that I’m probably still another year to 18 months out. But hey, but at least I’m on their radar now. They also told me that Im the the type of patient who would probably do well, but that timing was everything. They’ve also told me that they successfully transplanted another asthmatic back in 2008. though they wouldnt tell me if that person was still alive. Anyways, I meet with the Surgeon and Psychologist on Aug 15th, so hopefully will learn a little more the. So far, all of the tests that they’ve done look really good. (CT scans, echocardiogram , blood work etc).

      Believe me, you’ll be the first to know if and when I get listed 🙂

      Take care Buddy, and take care of that new Kidney..

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