posting the story of Don Wood. Merry Christmas to all
of you and may 2008 bring new hope for all with CF and
for all that love them!
Don Lynn Wood died on December 20, 1997 of cystic
fibrosis. He was 46 years old and loved by many, many
people here in Utah.
A few years before Don died, he wrote up an
experience that he had that answered for him many
questions about his life and about why he had cystic
fibrosis and what purpose having that disease had in
his life. I stumbled across his account in a book on
near-death experiences that my husband gave me for
Christmas -- right after Don had died, and right after
our Johnny had been diagnosed with CF. I read his
account to the whole family, and it touched us deeply.
In honor of Don, I would like to share his
experience with the wlgroup2 list. Please be warned
that the account contains religion. Don was a Mormon,
and the beliefs of that Church are woven into his
account. Wherever Don is at this moment,
I think he would be happy to know his words reached
other pwcf and their families.
The form of the account is an interview
between Don and the editor of the book (Arvin S.
Gibson, Echoes From Eternity, Horizon Publishers,
Don had stopped off at the University of Utah
Medical Center for a brief check up when I first met
him in March 1993. He smiled and shook hands as we
sat in the hall to conduct our interview.
Having read a little of Don's experience
before meeting him, I knew that he had severe chronic
health problems. When he joined me, therefore, I was
unprepared for the vigorous, lively man who shook my
hand with aggressive good nature. He was shorter than
the average man, but his youthful appearance and
energetic nature dispelled my preconception.
Don was born in October 1951 at the Utah
Valley Hospital in Provo, Utah. Upon his birth, the
medical people observed there was something wrong with
his body. He was secreting excessive salt, and he was
having sevre intestinal and pulmonary problems. These
problems ultimately led to a diagnosis of cystic
During much of his youth Don was raised in the
Orem, Utah area where his family founda physician who
could treat Don's disease. Until the age of five or
six, Don was not able to eat normal foods; he grew up
on liver, rice water, and fruit. His diet allowed no
milk, no greases or fats, and no whole grains. This
restricted diet was largely the cause of his short
Don was the oldest of four brothers and one
sister. All of the children were adopted so the
genetic origin of his disease was unknown. He and his
brothers and sister were raised in a typical Mormon
Both of Don's parents had obtained higher
degrees. Don's father had a doctorate in chemistry,
and Don's mother had a master's degree. Because of
their educational status, they actively sought
information concerning Don's symptoms in medical
journals -- at the time, cystic fibrosis was not well
understood. It was not discovered as a genetic
disease until 1945, and most of the research was in
the eastern part of the United States. Don was ten
years old before they identified his problem as cystic
After attending high school in Orem, Don went
to Brigham Young University where he obtained a
Bachelor of Science degree. His education was
interrupted by a two year mission for the Church of
Jesus Christ of Latter-day Saints to the Florida South
Spanish Mission, which included Puerto Rico.
During his youth and later, Don and his
parents learned how to minimize problems with the
disease. Diet was a primary control factor, and he
learned to avoid excessive sun or heat. However, Don
believes that there was another factor that
contributed to the long-term control of his disease.
I will let him tell his story from this point.
"By the time I was five years old, my parents
had faced many crises with my health. Neither they
nor the medical community knew what was the real cause
of my recurrent health problems. My parents were
concerned about my long term survival; consequently,
one day my father sat me down on the sewing stool in
our home and gave me a blessing. In the blessing he
promised that if I remained faithful to the Lord, as a
little boy, and later as a responsible adult, I would
receive all of the blessings of a nromal person. He
told me that I would be able to go on a mission for
the Church, I would be married, and I would live a
"Had my father known how serious my disease
was, he might not have promised all the things that he
did. As it was, since he was largely ignorant of the
real implications of my illness, the blessing he gave
was unrestricted. I still remember the promises as he
gave them. The blessing has had an enormous impact on
"Concerning the promise of marriage, I met a
returned sister missionary in the Salt Lake City
Mission Home where we were both teaching classes.
This young sister was a superb teacher and I was
impressed and attracted to her. At the time, we were
both dating and engaged to separate fiances. We were
each having trouble with our respective relationships.
We used to get together and commiserate over our
respective problems. It took me about three years to
get my head togethr and ask my friend to marry me. We
were married in July 1977 and have since adopted our
two boys, who are now eleven and seven.
"After we were married, I fell ill with
pneumonia and other difficulties related to cystic
fibrosis, but nothing life-threatening until January
of 1985. For one week I couldn't pass anything, and I
felt very ill. I was not sure what the trouble was.
It turned out I had a blocked bowel -- common with
cystic fibrosis -- and it was a serious blockage. It
got bad enough that I couldn't even stand up.
"My wife took me to the Utah Valley Regional
Medical Center after I collapsed on the morning of
January 10. The doctor examined me and said that he
had to operate immediately or I would die. I doubted
that my illness was that serious. He again assured
me, with the utmost urgency, that there must be an
immediate operation or they could not save me.
"They operated right then, and they found two
liters of black sewer water in a gangrenous bowel.
They removed the diseased portion of the bowel -- the
appendix burst. I was in very serious condition, but
I recovered. That was the first major operation that
"Because of the severity of the disease I had
in my bowel, and because of scar tissue from the first
operation, one and a half years later the bowel became
blocked again. I returned to the same hospital and
the same doctor, and he operated again. Two days
after that operation it abscessed, and they had to
operate a third time.
"The third operation was on my hospital bed.
They could not put me under anesthesia because that
would have killed me."
"Did they use a local anesthetic?" I asked
"They used no anesthetic at all. My surgeon
instructed one of the three nurses to lie on my legs
and hold me so that I wouldn't move. The other nurse
was instructed to hold my hand and tell me when to
breathe in order to keep me from hyperventilating.
The third nurse was the surgeon's operating assistant.
"After disinfecting the area, the surgeon
retrieved a pair of surgical scissors which he plunged
into the abscessed area in order to reopen the
incision. There was a crunching feeling throughout my
body as he slowly cut through the abdominal wall. I
was writhing in pain. Finally he stopped cutting and
pinched open the abscess. The scene was so gruesome
that the nurse lying on my legs passed out. After
cleaning out the infected area, he sewed me up with
rough catgut thread. When he tied the knot, the
thread broke, upon which he ordered a larger needle
and thicker thread. Needless to say, the entire
process was extremely painful and emotionally
"After that series of operations I recovered
and resumed life. In November of 1988 I was admitted
to Utah Valley Hospital with a moderately high
temperature, pneumonia, and a severe sinus headache.
They let me go home for Thanksgiving dinner; however I
felt so bad and my teeth were hurting so much that I
couldn't eat. I went back to the hsopital. The next
day I went to my dentist and had him take X rays,
thinking I might need root canal work on my teeth,
"My dentist said that I had the worst case of
sinusitis he had seen. He urged me to see an ENT
specialist. I returned to the hospital and they had
an ENT specialist examine me. Upon completing the
examination he explained that I must have an emergency