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Apr 12, 2018 Latest post:
Aug 5, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Summary of my losing battle with IPF -- Idiopathic Pulmonary Fibrosis
Less than a year and a half ago I was diagnosed with Idiopathic Pulmonary Fibrosis, an incurable disease that gradually calcifies the microscopic air sacs where gas exchange happens in the lungs, rendering them incapable of cleansing the blood of carbon dioxide, and exchanging it for the fresh oxygen required for muscle function, repair of damaged tissues etc. An X-ray of my lungs looks like they’re filling with spider webs from the bottom up.
About 40,000 new cases of IPF occur every year in the US. IPF progresses at various rates, sometimes it takes 5-10 years to ruin its victim’s lungs. Sometimes it works much faster, as in my case. When I was diagnosed in October of 2016, I had already lost 40% of my lung capacity. My lung capacity now is in the range of 30% of normal, and I am dependent on a constant supply of supplemental oxygen to function. Upon careful consideration of my future, the option of gradual suffocation appears particularly unappealing. The only other possibility -- lung transplant -- seems an easy choice until you think through the process (i.e. you get cut nearly in half, then trade formerly trusty, but dying lungs for a new pair that your body will spend the rest of its life trying to kill). Not for the faint of heart, but it didn’t take long for me to come around. A lung transplant now sounds like my idea of a good time!
Fortunately, over the last 20 years, lung transplantation has become a routine procedure, with over 1,200 successfully performed in the US each year. After researching a dozen options on-line, one of the most active lung transplant hospitals in the country turned out to be St. Joseph’s Medical Center in Phoenix. The University of Utah’s program is also highly respected. So, in late December, when my pulmonologist told Deb and me that my ‘fast-tracking’ IPF needed a transplant asap, we began pursuing both the UofU and St. Joe’s vigorously. St. Joe’s rose to the top because of its high volume and their astoundingly short wait time, less than 30 days for 80% of their accepted patients, as compared to 3-6 months at the UofU.
After the holidays, we made appointments for pre-transplant interviews and testing at both facilities as soon as possible.
Fast-forward through flying to Phoenix in early February, and a week of intense testing at the UofU (results got transferred to St. Joe’s). By mid-February it became clear that fighting for breath in the cold and snowy loveliness of our 6,400 ft. mountain home at Jeremy Ranch was too much stress for my heart, and the rest of me too. When the first round of testing was completed at the UofU on March 3rd. We packed up the essentials, including our too-cute puppy girl Ivy, and headed south. (Our other dog, Andy, is in the tender, loving care of our daughter Alison and her big puppy, Hanu, in Salt Lake City.)
It took just minutes of our first week in Phoenix to settle into the 800 square feet of our frill-free, two-door (not Tudor), as it has just two doors - entry and bathroom. mini-pad/holding cell.
After 10 days of warmth, sunshine, and poking around Phoenix, March 19 started a my final run of testing. Feedback from what, in sum, is certainly the best physical I never wanted to have, dashed all illusions that failing lungs were my only imperfections.
The really great news is ... they want me anyway!!!
On Good Friday, March 30, I got the call we'd been hoping for since before Christmas. I made the final cut!! I will be on their transplant roster as a receiver, not the water-boy, by the first week of April.
And, oh by the way, just a few more tests. April 3, I visit the transplant tailor shop to get fitted for my new pair of custom lungs. They also need another 1/2 pint of blood for infectious disease testing. After an appointment with a cardiac surgeon I could get the "call to install" at any time.
The plan is for the heart surgeon to patch an ASD (Arterial Septal Defect) while they are transplanting the lungs. (An ASD is a small hole between the right and left sides of the heart, partially covered by loose flap of the heart wall. 25% of us have an ASD and never know it, but it's highly unfashionable in the transplant world.)
We thank you all for the great support, kindness, and the much needed help that has been pouring our way since we began this process. The hardest part of moving to Phoenix is the distance it puts between us and many of our dear friends and family, though we are very fortunate to have a several good friends and family who have made us feel very welcome here in the Phoenix area. We eagerly anticipate hearing from, and seeing many of you while we are here. Our new address is:
Steve & Deborah Lewis
535 West Thomas Road, unit #303
Phoenix, AZ 85013
ON APRIL 30TH WE'LL MOVE TO: 6894 East Thirsty Cactus Lane Scottsdale, AZ 85266
Of course, we will send updated information as things progress toward, and beyond that "call to install." If you’re thinking of visiting before the surgery, we welcome that, and should be free until sometime in mid-April (just guessing).
After transplant we’ve been advised that one or two helpers at a time will be very useful, and much appreciated, with the understanding that I will be completely flattened for the first two weeks or more, and Deb will be 100% focused on my care. We both will need help and support in a carefully coordinated way. She will not be able to ‘entertain’ visitors, nor be responsible for their lodging or transportation. It will also be essential after transplant for me to avoid exposure to any infections.
We look forward to hearing from you, and coordinating visits through Deb.