Lung Evaluations
Over the last 2 weeks I have been experiencing what my new pulmonologist, Dr Concerned, calls a “flare up”. And yes, in case you are wondering I fired my previous pulmonologist, Dr Busy. It seemed like he had all but given up trying to find ways to get me more comfortable. I believe he was great at solving the riddle of my lung issues but once diagnosed, I found him to be way less interested in my ongoing welfare.
Back to the “flare up”....I had begun to go downhill again and 2 weeks ago my wife and I had serious discussions about checking me back into the hospital. I held out an extra day as I already had an appointment scheduled with Dr Concerned. I’m glad I waited.... he immediately prescribed me some antibiotics that I had not used before and boosted my Prednisone over a 10 day period. It took a couple of days to take effect but I now feel a whole lot better. In fact, the best I’ve felt in the last 3 months. My resting heart rate is the lowest it had been since leaving the hospital the very first time.
The other big news of the last couple of weeks is that my insurance company let us know that I would not be covered to have an evaluation or transplant at Duke Hospital in Durham NC....the closest and one of the best lung transplant hospitals on the East Coast. Even though it is “in network” they said I had a “Narrow Policy” which I purchased through the exchange which did not cover a transplant anywhere in our state. The options given were to go to Vanderbilt in Nashville or Charlottesville Virginia. The reality is that would mean moving our whole family to a place where we would have no network of help or assistance. That simple fact would probably rule me out for a transplant due to insufficient back up.
This situation triggered my wife to a level of “determined” that I have never seen or experienced before. She launched a social media campaign of staggering proportions aimed squarely at the insurance company and the lack of options on their own website that would have drawn our attention to an optional plan. By the way the plan we should have got (with the extra transplant coverage at Duke) has exactly the same name and details so there is no obvious way to tell the difference and you must buy it direct from them and not through the exchange. There is clearly no option to do that through the exchange website so us and many others have been caught out by this anomaly.
The campaign evidently triggered something in many of our close friends and even their own friends. Phone calls were made, emails sent, the insurance company’s Facebook page was overloaded with posts about our story, TV stations and other media were contacted, and local political identities were drawn into the fray. It was a pretty impressive display of the little guys being heard.
Finally, after a week or so of lobbying on many fronts, the insurance company succumbed to all the pressure and granted us a “gap exception” so that I can have my lung transplant assessment at Duke Hospital and be covered by my insurance. I still have to change my insurance to the same policy with the transplant stipulation included on Jan 1st. Duke have already contacted us and I am scheduled to be assessed over a week of testing in November.
In the meantime we have also heard from National Jewish Hospital in Denver who we are trying to schedule a visit with to completely assess my MAC Lung Disease and Alpha 1. At this point we are in the process of getting all the doctors to send the relevant information over to them so that they will know which particular tests they will need to perform during my time there. They are saying the trip could be anywhere from 5-10 days depending on my testing requirements.
At this point we really don’t know if the trip will ultimately be necessary given that I am seeing Duke in the very short term. If I get on the transplant list then the need to go to Denver may diminish. It also depends on the length of time I’m likely to be on the list. If the doctors at National Jewish find a way to make me more comfortable during the wait for a transplant then it would totally be worth the effort to get out there.
The other issue is physically making the trip. I am so up and down at the moment that it’s difficult to predict how I will feel on any given day. My wife will not be able to come with me as we have a young family so luckily one of my closest friends has stepped into the breach to accompany me there and back and stay with me should I need to go. It’s such a kind and unexpected offer and a sign that your closest friends will always have your back when you need them. In fact this month we have seen many of these signs in the struggle to get me back to being healthy again.
One step at a time.....