First, my apologies to anyone that receives thie message more than once as I'm merging a few different address books. Second, feel free to share this with anyone you think we may have left out of the loop. It has been a little while since Eileen and I gave you an update on my health status (maybe since last Christmastime) and we have had some pretty eventful weeks of late.
The last Thursday in September I had an asthma attack come out of the blue, ironically immediately after completing a breathing treatment at home. My oxygen levels dropped very quickly and dangerously low so we called 911 and the paramedics rushed me to Good Samaritan Hospital in Cincinnati. I came within a blink of being intubated and fortunately pulled through after a two night stay in the ICU. I can say that I stared death in the face that night and at least this time I wasn’t the one to blink. Apart from the seriousness of the whole situation, the fact that we still don’t know what triggered the attack weighs on the back of our minds.
After consulting with my doctors in Cincinnati and Cleveland (Clinic), I spent the first week of October making my first national conference presentation at the American Physical Therapy Association’s Educational Leadership Conference in Connecticut. I “celebrated” the standing-room presentation with a trip to the Stamford Hospital ER, this time with kidney stones which while equally debilitating, were not as life-threatening as the previous hospital visit. (Though the ER doctor’s casual disregard for my compromised lung function made the trip a bit more precarious than it needed to be). I’ve been told that kidney stones are the closest experience a man can have to child birth and that some women prefer labor to passing a stone. At the very least, I know what “10 out of 10” pain feels like and since my stones still haven’t passed yet, I may know it but again.
So this week Eileen and I made a previously scheduled visit up to the Cleveland Clinic to see my doctors there and to trial an immunotherapy treatment to see if it might help my breathing. About three quarters of the way through the treatment my body started into intense shivering/tremors (not an uncommon side effect of this treatment) which were enough physical activity to cause my oxygen levels to plunge again. At least this time we were already at the hospital and I recovered quickly after just a one night stay.
In the short term, these weeks have been very trying for our family. Eileen and I are worn out and Adah certainly has a sense that things are not right, at least in so far as her parents not being around so much the past few weeks. Thank you to everyone who has made a phone call, said a prayer, sent an email, dropped off a meal, or played with our children. We are truly blessed with great social support both near and far from us.
These developments also mean some very practical, but very hard changes to my daily life. I use a handicap hang-tag on my car and take the elevator instead of the stairs. I really need to be using oxygen for any activities above and beyond walking short distances. I need to be much more cautious about my activity levels traveling to visit my Mount St. Joseph PT student interns, treating my own patients in the clinic, playing with the kids, and doing chores around the house. These are not the life choices that any 31 year-old expects to face in the prime of his or her life. I think these sacrifices are that much harder knowing that I was a fairly competitive athlete through college and still look healthy enough that nobody would ever expect me to be as sick as I am. (Even new doctors onto my case tend to do a double-take).
And the path doesn’t seem to get any easier heading forward. The pulmonologists in Cleveland seem just about out of any new therapeutic ideas. I had an official consult with the lung transplant team at Cleveland Clinic this afternoon and my next step is to do the formal testing to see if I might qualify for transplant (whether that would be sooner or later). To be clear, transplant may be my best hope, but it is not an ideal outcome. It is a very risky procedure with all kinds of life-long side effects and the survivor rates for lung transplant are simply not very good.
The other kicker right now is that our insurance company considers Cleveland Clinic “in-network” for typical medical and hospital care, but “out-of-network” for transplant services. Not to get too political, but this feels like a very arbitrary decision by the insurance company which ultimately limits my choice to see the providers I already know and trust. What’s more, with a million-dollar pre-existing condition my ability to pursue coverage with a different employer, through Eileen's employer, or another insurer is precarious pending the outcomes of the election and further healthcare reforms. Cleveland Clinic is literally the world leader for lung transplant both in terms of the numbers of cases they have done as well as patient outcomes. Between those statistics and our growing rapport with our Cleveland doctors, the Clinic would be our far superior preference. However, we may have to cross the very troublesome bridge of trying to fund a seven figure procedure out of pocket or going to another medical center with less experience and lower outcomes. We still do have some other avenues to pursue yet in this regard.
We are sorry to share this news so impersonally via email, but know that people have picked up bits and pieces through the grapevine. We appreciate your support and concern in whatever ways you have offered it. We love you and appreciate your presence in our lives.
Pete, Eileen, Adah, and Eamon