Hefron Backgound

Mike Hefron is a 47 year old male, married and a father of 4 children
(ages 17 to 6). He is an executive with IBM and is responsible for major
accounts WW. Mike is very active and coaches competitive soccer. He was
a tri-athlete and competed in 100+ mile bike races before his illness.
In high school and college, Mike played football and soccer.

Words that Mike does not like:

Thrombolytic

DVT and PE

Heparin

Lovenox

Warfarin

Heterozygous prothrombin mutation

\*\*\*Now these are part of my life\*\*\*

Words that Mike likes:

Work hard...play hard

Sweat

Work out

50 Mile Bike Rides

Soccer

Anything Physical

\*\*\*\*Now these are not a major part of my life\*\*\*\*

History of illness

On Oct 23, 2003, I believed to have broken my right foot (seasmoid bone)
on a 9 mile training run in Boston. I walked on my foot for over a week
hoping the pain would go away. On Oct 31, I went to the orthopedic
doctor in Charlotte NC and they determined that I broke the Seasmoid
Bone in 3 places and that a cast was required on my right leg up to the
knee. Dec 2, a second cast put on. Discussion of discomfort in my calf
after keeping my foot elevated during sleep and then putting the leg
down to shave and brush my teeth. Aching feeling developed in my calf.
On Dec 9, I traveled to Dallas on business and developed Flu like
symptoms (aching feeling in my chest and developed night cold sweats).
Leg swelling occurred that I could not control. Dec 12, I traveled home
and cast leg was 2 inches bigger (swollen) than normal leg and felt
sick. Elevated foot and controlled swelling with aspirin/ice. On Dec 13,
my leg felt ok but had a solid night of heavy sweating. Went to
Orthopedics and take off cast when severe swelling was occurring. Sent
to Ultrasound (Charlotte NC) and determined extensive DVT in right leg.
Sent to Mercy South Hospital and started on Heparin and Comadin after CT
scan, bilateral PE were found and I was admitted into the hospital.

On Dec 23, the hospital staff managed blood levels with Heparin and
Comadin. Finally managed therapeutic levels and was discharged with a
INR of 2.1. Went home on 7.5mg of Comadin. Dec 26 - Readmitted into CMC
Downtown by my internist for lyses of DVT by the interventional
radiology. The Doctor performed the procedure using Ridevase and
ultimately cleaned out the clot with a Saline Jet stream. Both the
Popliteal and CFV were cleared of the clots. I was put on Heparin and
Comadin as soon as procedure was completed. Dec 29, I was discharged and
sent home on Comedin10mg.

On Jan 2, I had an INR 3.7, Lovenox was stopped. Became very ill in the
afternoon and spent the day in bed with severe cold sweats. Severe ache
in calf developed during the day. Dec 3, the hospital ultrasound
determined EXTENSIVE CLOT DEVELOPED IN THE FEMORAL AND POPLITEAL VEINS.
Readmitted to the hospital and put on Heparin and taken off Comadin. On
Jan 6, a 2nd attempt of lysis occurred with by the CMC Interventional
radiology. They used the Ridevase again and the procedure was a complete
success WHERE THE POPLETEAL AND CFV WERE COMPLETELY CLEARED. Placed on 5
days of Heparin and bed rest.

On Jan 9, the initial Ultrasound showed narrowing of the Popliteal to
the CFV. It was unclear if this was a result of the procedure on the 6th
or the clot was reforming

Jan 11 I was discharged from the hospital and Jan 12 - Second Ultrasound
concluded that there is ONCE AGAIN A RECURRENT THROMBUS EXTENDING FROM
THE POPLITEAL TO THE CFV. THE CFV THROMBUS IS NON-OCCLUSIVE AND THUS
NARROWED.

It was also determined that I had a genetic blood disorder called
Heterozygous prothrombin 20210 mutation which was inherited from my
father's side of the family. Currently two of my siblings show the same
deficiencies.

At this point, I began an extensive search on how to treat my DVT
because I did not want the rest of my life to be hampered with limited
use of my right leg. I contacted Duke University, Cleveland Clinic, UNC
Hospital, and many other institutions. I ultimately planned to go to
Cleveland Clinic on Monday, Jan 27 to meet with staff and discuss next
steps. On Sunday, Jan 26^,\ ^Dr. Moll called at the halftime of the
Super Bowl and agreed to see me that week at UNC.

I was admitted to UNC Hospital on Jan 29 and the staff performed the
first Lyses procedure and completed the process the next day. I was
placed on 15 days of Heparin and bed rest, initial indication was that
the Popliteal to the CFV were clear. On Feb 12 an ultrasound was taken
and unfortunately the CFV had narrowed significantly and there was
nothing else that could be done at this point. I will be on long term
Comadin for the rest of my life.

I still have pain in my calf and behind my knee. I am limited in my
exercise and I am very careful of not getting in a position to fall and
bruise. Recently I had my right hip replaced due to wear and tear over
the years.

How am I doing today?

I have to manage this illness day to day. I can't sit for long periods
of time (about 1 hour) without having to walk around to get the blood
circulating. I travel extensively for my job and I need to mindful of
getting up when my leg tells me to during travel (I need to move around
in an airplane each hour of travel and I last about 1 to 1 ½ hours
automobile driving before I have to stop and walk around)

I can exercise for about 1 hour a day but no longer or I will be in pain
for the rest of the day.

I need to be mindful of outdoor activity and chores. I can't take risks
that will hurt me in the long run (i.e., getting up on the roof)

I experience night sweets from time to time and still get the restless
right leg once in while...but these are manageable.

Future for Mike Hefron and Lessons learned

When the onset of pain and swelling occurred with my leg in a cast, I
should have:

\* Listened to my body (pain means something)

\* Wish I knew about DVT and PE and the risks/signs of the illness

\* Gone to UNC and had the Lyses performed immediately after clots were
detected (I

listened to bad advice form my doctor vs. being a proactive advocate for
myself)

DVT's and Comadin will always be a part of my life...I need to make
major adjustments in my life going forward.

What do I worry about?

\* Getting hurt somewhere in the world and the people trying to help me
who have no clue

of my illness (and actually complicate the injuries). I would like to
see a patient

centric care model that allows anyone to access my medical records if
they need them.

\* My children getting this illness, especially my son who was born with
a Congenital

Heart defect. How can medicine advance to help him? How can we fund the

development of research to stop this killer?

\* How can we expand awareness of this illness...people need to listen!