Tale of Two Bagels


Tale of Two Bagels

It was the best of times, it was the worst of times, it was
the age of wise bagel makers, it was the age of foolish bagel chain stores, it
was the epoch of unbelievably good bagels, it was the epoch of incredibly bad
bagels, it was the season of light bagel inner dough, it was the season of
darkness wrought by heavy bagel dough (like lead), it was the spring of hope
(actually it was July, but better late than never), it was the winter of
despair (yes it was, almost dead in Santo Domingo), we had everything before us
(in faith), we had nothing before us (but faith), we were all going direct to
Heaven, we were all going direct the other way (that is indirect to Heaven by
way of Delray Beach, FL).


Yes, we completed our move to South
Florida, and I forgot how good the food is down here. Especially
the bagels, and the Cuban food, and the Italian food, and the deli’s, and the
produce markets, et cetera, et cetera, et cetera!!!!! But I digress from the purpose of my
updates…. However, better food, means that I will eat more and put on some
weight. That is good for my health. My current challenges are headaches and
nose bleeds, but I am breathing much better than 3 months ago. My health and
specifically my breathing is very sensitive to getting
enough rest and nutrition, and the food here is sooo
good. Like the Italian pastries with espresso, and the abundance of great bread
with real crust. But again I digress.


We made the move for several reasons, but the primary reason
that prompted us to consider the move in the first place, is my health. As I
wrote in a previous update, the doctors at Vanderbilt basically gave up on me
and offered no new options. The next day we began the journey to a stem cell
procedure off-shore. ( if you are new to these updates,
you should be able to find all precious updates in my FB group that Terri
Gilley Gilchrest created – thanks Terri, or on my personal website, www.angelodistefano.com – thanks Larry Hawkes).


For some history of lung function as measured by the
pulmonary functions test, I have numbers going back to 2008. For the key
indicator of lung function for a chronic obstructive pulmonary disease such as
Cystic Fibrosis, the doctors look at FEV1, which is the Forced Expiratory
Volume 1st second. This is measured while the patient takes a full
deep breath, and exhales as quickly as possible. The air volume measured in the 1st
second of exhaling is the FEV1. It is measured in actual volume and as percent
of predicted. The predicted volume is the volume that a healthy person can
exhale in the 1st second. My
function was hovering at about 28% of the predicted/healthy volume since 2008. This
is what I am referring to when I say 28% lung function.


The doctors will consider patients for lung transplant when
they drop to 30%, so strictly from an FEV1 standpoint,
I have qualified for lung transplant for many years. I have never believed that
was the right option for me, and I am glad now that I did not go that
route. In the late fall of 2010, my lung
function dropped to 24%. In March of 2011, I had the near death experience with
the new drug Cayston. By April, the FEV1 had dropped
to 18%, the lowest it has ever been. If not for any options, I was a dead man
with only days to live. Then on May 4th,
I received the stem cell transplant in the Dominican Republic.


Today was my initial visit with my new primary care
physician in FL. They did the pulmonary functions test today, exactly 3 months
after the stem cell procedure. Are you
ready for this……Are you sitting………drum roll please……………


My FEV1 as of August 4, 2011 is ………..

and we hesitate for drama just like the
talent show singing and dancing contests……..


More drum roll……………….




A long way to go, but this
is remarkable and truly, life from the dead. Thank you Lord, and thanks to all of you for prayers and financial contributions to save my life. On Aug 12, I have a phone appt with Dr. Grekos to discuss the next treatment. When I get to 60%, I will plan a ski trip. Who will join me? I can smell ski slopes in the not too distant future. Blue diamond slopes, here I come.



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