Transcript from Suzanne Davis' presentation at the Donor Appreciation Luncheon at Harmonie Club, NYC on September 18, 2008.
I’m not a former patient; I’m a lifelong patient – and lucky to be one. I'm delighted to have the opportunity to tell you how I discovered National Jewish Health, and how it has saved my life.
I am 65 years old, married for the first time 5 years ago on my 60th birthday, retired just 3 years ago from working over 40 years as an executive in three different companies. That’s when I finally had the time to explore National Jewish Health. I have bronchiectasis and COPD, along with MAC and that dreaded super-bug: pseudomonas.
How I Found National Jewish Health
I had a respiratory condition for 20 years but never took any time off to take care of myself – no sick days for me! When I retired, and I was STILL coughing - I realized I needed to become proactive, so I looked up National Jewish Health. I heard about it when I was Executive Director for 22 years of the The J.M. Kaplan Fund, a foundation that supported civil liberties and the arts and the environment in NYC – but each year we gave a $10,000 out-of-program grant to this hospital in Denver at request of a senior trustee, Mr. Austin – the only grant he ever recommended. I always wondered why we did this. Now I know. None of the many doctors I had consulted here in NY over the years had been able to resolve my condition – mainly lots of coughing, sometimes coughing blood, and getting out of breath more and more. I remembered National Jewish Health, and when I researched them on the web, I found they were [the] #1 [respiratory hospital in the nation]. Made application – they were very helpful in getting my insurance company to pre-approve it before they accepted me. Waiting to hear if I was accepted onto their schedule was like waiting to get into college. And when I got there I realized that the experience, in fact, was not so far off from going to college. It’s been an education. I’ve been there five times since February 2006.
The facility itself is warm and welcoming; the people; the building, still expanding, in fact, since I first started going there; great cafeteria, cozy library with free use of computers, nice campus. All the most advanced equipment. Everything is thought through to make your stay comfortable. So each time I return to National Jewish Health, I feel as if I’m returning to a familiar alma mater.
Dr. Chuck Daley is in charge of my case. Aside from his being one of the world’s pulmonary experts – he is approachable, warm, chatty, accessible, not rushed. And caring. He answered one email from me when he was in Amsterdam. In my appointment this March – my phone rang a month before – it was Dr. Daley calling me from Denver airport en route to Botswana – wanted to be sure I had a confirmed appointment. When I was out there for a couple of weeks this March, when I had gotten very sick – he not only took care of me in the hospital, but also phoned me from his skiing weekend in Vail to see how I was doing. Does YOUR doctor do that???
Another of my favorites: Dr. Ben Young. We bonded instantly, like old friends. He made extra daily visits to check on me. During this last visit I was there for 9 days, and I had at least five or six doctors monitoring my condition – each was dedicated and pro-active in trying different drugs and approaches to fight my then raging pseudomonas.
I left there with an oxygen tank and in a wheelchair – and it took me another 2 months to regain my strength. At one point I had to ask my husband to slice a baguette – I was that weak. Today I feel good and can do pretty much what I could before – mind you, I was never running marathons anyway. I am grateful for everything I can do today that is just “normal” – like schlepping home 4 bags of groceries, or visiting 2 museums in one afternoon. My lung capacity is reduced because of the surgery and the resident infection – but it’s not a problem for me. I will surely have recurrences of my infection, for example, if I catch pneumonia again, so I have to be very careful – but at least I’ll know just where to go for the best care.
When I got home in March, I wrote thank you notes to each one of the doctors for taking such good care of me. They said I’d get better, and I eventually did – look at me now!
The first doctor I consulted here in NY, back in 1986, identified that there was a MAC infection in the middle lobe of my right lung. Twenty years later, and after countless X-rays and consultations with several different doctors here in NY – not one of whom, by the way, ever suggested that I reach out to National Jewish Health - when I got to National Jewish Health, Dr. Daley determined that that very same part of my right lung had severe MAC infection and should be removed to prevent further deterioration and to improve my overall health. No doctor here was so aggressive; I had total confidence that my life depended upon following Dr. Daley’s approach. And he was right.
Another out-of-the-box treatment: In Denver they had me use something called The Vest, an electronic vest that inflates when hooked to a vacuum-cleaner like contraption – it vibrates and shakes my chest so that the bacteria can’t host there and cause more damage. I have The Vest at home now – it cost $17,000, but they helped me to get my insurance to cover it. I use it every single day – 20 minutes in the morning and 20 minutes at night. It is my lifeline. Too bad it didn’t come in red.
What It's Like to Go There
The first-time evaluation visit lasts nearly two weeks of appointments and tests – very thorough – everything from X-rays and CT scans to meetings with physical therapists, psychologists, dieticians, pharmacologists, and advisers on how to manage in the home. I have to laugh about the therapist who came to counsel me on how to save energy; I quickly told her that we’d already replaced our light-bulbs and unplugged our chargers – before I caught on that she meant how to save MY OWN energy! In fact, her tips on how to make a bed or unload a dishwasher proved to be useful, as there was a point at which I had trouble making the bed.
So far I’ve been out to National Jewish Health five times and am about ready to schedule my regular checkup for early next year.
A Different Medical Culture
You may have seen the New Yorker article in the Aug. 11 issue about “SuperBugs”. It was pretty depressing – talking about the “doomsday bugs” like my pseudomonas for which there is no cure and insufficient funding for research. But I know that the smart people at National Jewish Health are working on this, and if I’m lucky they will find a cure in time for me to use it.
The New Yorker article also refers to an interesting phenomenon that my husband and I consider ourselves to be in the vanguard of. I go regularly to Denver; and my husband and I recently went to the Minneapolis Heart Institute to consult the expert there on HIS heart condition. The New Yorker calls this: “clinical tourism” – traveling long distances to get the best care. It’s curious, living here in NYC, that we should have to travel far to find the creative thinking, expertise, and innovative techniques for severe medical conditions, but I assure you, it’s worth the trip.
My Role as Advocate
I’m a networker by nature, and one of the causes that is a high priority for me is spreading the message of National Jewish Health. I thought my situation was unique, but since I discovered National Jewish Health, quite a number of friends have referred people to me who have unsolved respiratory problems, and I have told them of my experience in Denver. At least a couple of them have gone on to National Jewish Health. Just a couple of weeks ago I was at a family wedding and was introduced to someone: “You should meet Wayne; he has respiratory problems, too.” Wayne said he was told he has sarcoidosis, but thought he should get a second opinion. I told him he certainly should, and that he should waste no time in going to the #1 place in the country. “Don’t mess around with this,” I told him.
I believe so strongly in the mission and the approach of National Jewish Health and the results I have seen for myself that I can do no less than make myself available to tell my story and encourage others to seek the same care. You who are here obviously have some connection with National Jewish Health – maybe as patients, or supporters, or maybe you are just considering whether you should go out there. I can’t say too strongly how important it is to take care of yourself and to get yourself to the very best hospital in the country for respiratory diseases. And how important it is to support the vital work they are doing.
In closing, let me give one more example of how attentive they are to detail. After my last visit I sent in a contribution – it was big for me, but not big in terms of hospital fundraising. I, as a former foundation executive, was astounded and delighted to receive FOUR acknowledgements of my modest gift – including a call from Hugh Williams, which is how I came to be here today. Very impressive! So I think back to my days at the J.M. Kaplan Fund, and why our Mr. Austin recommended an out-of-program grant every year to National Jewish Health. I have found the answer, and I am grateful that because of that history I came to know about National Jewish Health, which has prolonged my life and, equally important, given me peace of mind. I will continue to support their efforts, and to help spread the word of the important work they do.
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