THE LIST

February 15, 2013

After 2 weeks of testing & evaluation, Lee has been accepted as a heart transplant candidate with the Mayo Clinic in Phoenix and will be listed as a Status 2 on the heart transplant waiting list.  There are just a few minor hurdles left before Lee is actually placed on the list.  A visit to the dentist is needed to confirm that there are no infections in the mouth.   Several vaccinations:  Hep A, Hep B and the Shingles vaccination need to be completed.  The vaccinations are important because after transplantation, the patient has no immune system whatsoever.  We also need the all important insurance approval, which is in the works.  In about 2 weeks, Lee will actually be placed on the wait list.

Our transplant nurse said, "You passed GO!"

We were so thankful to have Lee's brother, Mark (Uncle Mark!) accompany us for the consultation with our transplant cardiologist, Dr. Steidley.   Mark's background in reporting and investigating for news stories was put to good use as he took several pages of notes (while my mind went strangely blank) and asked some great questions for us.  Having that extra set of eyes and ears was an amazing blessing.  It was helpful not only at the time of the appointment, but in our "debriefing" on the ride home and throughout the evening discussions.  THANK YOU MARK!

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UNOS --- United Network of Organ Sharing

This is the list on which Lee must be placed to receive a donor heart.  UNOS is a private, nonprofit scientific and educational organization.  It assists the transplant community in allocating donated organs and managing transplant data.  http://unos.org/  Their website is an amazing resource for understanding the wait list, transplantation, and statistics. 

OPTN --- Organ Procurement & Transplantation Network

The OPTN is a unique public-private partnership that links all of the professionals involved in the donation and transplantation system. The primary goals of the OPTN are to:

• increase the effectiveness and efficiency of organ sharing and equity in the national system of organ allocation, and to
• increase the supply of donated organs available for transplantation.

UNOS administers the OPTN under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services. 
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Wait list status (as establish by UNOS)

Status 1A:  these candidates are the most critically ill.  Many will be in the hospital at this time.  Most will have some type of device (artificial heart/LVAD) implanted already.  Qualification for Status 1A must be recertified every 14 days by the transplant cardiologist in order to stay on the list at that status.

Status 1B:  these candidates are second in medical fragility & typically will have an implanted left and/or right ventricular assist device and/or are reliant on a continuous infusion of IV medications

Status 2:  these candidates don't meet the criteria for status 1a or 1b at the current time.  These candidates are medically fragile but are being kept stable with lifestyle choices (diet & exercise as prescribed), medications (lots and lots of medications) and assistance devices (ICD, pacemaker, etc.)

Dr. Steidley gave us some statistics for the Status 2 waitlist.  In a year's time:

• 1 of 5 people will get worse & move to the 1B list
• 1 of 5 people will get significantly worst and move to the 1A list
• 2 of 5 people will stay the same
• 1 of 5 people get better and are moved from the list

Status 7:  candidates who have temporarily moved off the list.  This can be because there has been some medical change which renders the candidate unsuitable for organ transplant at this moment or in the case of the person desiring (and is medically fit) to travel out of the transplant hospital area.  For us, we may mean choosing to travel to the Pacific NW to see family & friends for a month or so.  Grandchildren are God's medicine   for the soul, are they not?
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How does "The List" work?

We were amazed by the organization, fairness, and complexity of the organ donation and recipient process.  This will be my attempt at simplifying the description of the process.

We are in REGION 5 of the OPTN's 11 regions in the USA.  Region 5 includes Arizona, Southern California, Nevada, Utah and New Mexico.

When a donor heart becomes available, the matching information (blood type, body size) is input to the system. 

If the donor heart is in the State of Arizona, the call/search goes out in the following order:
Status 1A (IN ARIZONA) -- if no suitable matches, then
Status 1B (IN ARIZONA) -- if no suitable matches, then

Status 1A (within 500 miles of donor heart) -- if no suitable matches, then
Status 1B (within 500 miles of donor heart) -- if no suitable matches, then

STATUS 2 (IN ARIZONA) -- if no suitable matches, then

Repeat the process/order to the entire Region 5 (Southern CA, NV, NM, UT)
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Because Lee has the most common blood type (A), there are more donor hearts, but also more recipient candidates.  Lee is of larger than average stature (6'3, 200 lbs), therefore he requires a larger than average heart.  A smaller person's body can accept and use a larger heart, but the opposite is not true.  A man of Lee's size cannot function with an average or smaller sized heart.  The conclusion is that as long as he is listed as a Status 2, it is highly unlikely that a heart will become available to him.  We DO believe in miracles.  Our God is big enough to handle this situation.  We just don't know what His will is in this part of our lives.  We put our faith and hope in Him and trust Him to take care of the details.  

In the meantime, Lee has been advised to stay as healthy & active as possible.  A 30 minute walk each day is a good goal.  Lee currently walks every other day, but will aim for a little more.  Golf is a GOOD thing, but no weight-lifting.  HA!  CHF (congestive heart failure) is self-limiting.  It's pretty much impossible to do more than you should. 

And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.  Romans 5:5 -----------------------------------------------------------------------------------------------------

The Mayo Clinic, Days 7 & 8 February 2013

Day Seven, Monday February 11

On Friday afternoon we received a call from a scheduler from The Mayo Clinic.  It seems that our doctor would like Lee to repeat the exercise stress test.  YAY!  (There's no good way to express sarcasm so I'll just tell you ... that was sarcasm.)  The commute, which was in the middle of rush hour, was amazingly smooth.  We gave ourselves 90 minutes to travel and we reached our destination in just one hour!  That was exciting.  We have to take our excitement where we can find it!

9:00am --  Mayo Clinic Hospital -- CARDIOLOGY  Exercise VO2 Max

The pre-appointment instructions say to arrive rested.  OK.  Done.  When Lee got into the lab, taking his blood pressure is the first step.  His initial reading:  84/59   The nurse/technician said she couldn't conduct the test with his bp that low (hmmmm  Lee's been living with this bp for a long time)  Lee told her to try the other arm but she still felt it was necessary to call for the doctor.   Fortunately, our transplant doctor was right next door attending another procedure so he was able to come right in.  Lee's bp was taken on the other arm with a reading of 94/70.  With the doctor in attendance for the testing, Lee was able to hang in there for 10 minutes or so.  This time, the treadmill was started a little slower and gradually increased.  

Another test is now in the records.  Lee was exhausted and we headed straight back home.  He had a good nap but still felt the effects of the exertion for the rest of the evening.
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Anti-coagulation background:   The VA is where Lee normally has all of his medical care, including the monthly monitoring of his INR, because he is on the anti-coagulant, warfarin (Coumadin.)   The goal with warfarin therapy is to maintain a balance between preventing clots (Lee has A-fib & a mechanical aortic valve, both of which cause blood clots) and causing excessive bleeding.  The INR is a lab test that measures the time it takes the blood to clot.  A normal INR would be around 1.0    Lee's doctors like to see his INR between 2.5 and 3.5

When we got home from the exercise stress test, we got a call from the VA about the labs that were taken on Friday.  Lee's INR was unusually high (for unknown reasons.)  His reading was 4.1 and they were concerned.  The instructions were to skip one dose and come back in for re-testing in 10 days.

Around 4:30pm, a Mayo Clinic nurse called.  She was calling to confirm the heart cath procedure tomorrow and to review the protocol.  She asked if Lee was taking his Warfarin.   Well, of course he was.  It seems that someone had forgotten to tell us that he should have stopped taking it for a couple of days prior to this procedure.  Couple this fact with his high INR & we were thinking that the procedure would have to be postponed.  I should insert here that twice before, Lee has had to postpone a surgery because his INR was too high (excessive bleeding during surgery is not a good thing.)  The nurse told him to eat as much Vitamin K (a natural blood clotting agent) as he could tonight and they would check his INR in the morning.  We enjoyed a couple of pounds of Vitamin K rich spinach for dinner, along with MANY cups of green tea.

Day Eight

 7:30am --  Mayo Clinic Hospital -- Registration
We are both getting a little weary of the long commute in the dark.  

7:45am --  Mayo Clinic Hospital -- LAB
Lee was not too convinced that his INR would be low enough for this procedure but away he went to have his blood drawn anyway.

9:00am --  Mayo Clinic Hospital --  Cardiology Cath Lab
As suspected, Lee's INR was high -- 4.2   Lee was pretty well convinced that they could not do the procedure.  The doctor who was doing the procedure said, "I think we can still do this."  I am SO glad I was not in the room when he said that .... you "THINK???"   Oy!   This test is essential for the determination of the health of the heart and therefore an essential part of the heart transplant evaluation.   After some consideration and discussion, the procedure was performed without incident.

The transplant doctor wanted to see both the left and right sides (or INsides) of Lee's heart.  The heart catheterization http://www.mayoclinic.com/health/cardiac-catheterization/MY00218/DSECTION=what-you-can-expect was done through 2 different entry points.  The right of his heart side was accessed  through an entry into the artery of his right wrist.  The left side was done through an entry into the artery in the neck.  Lee said the procedure was quite uncomfortable and one he hopes will not need to be repeated anytime soon (or ever.)  Because of the danger of lack of clotting, he had to lay still for a number of hours after the procedure.  He was sure glad to be done and on his way back home.  As for me, I was a bit anxious because of the high INR but Lee behaved himself and didn't lift anything heavier than a fork for the rest of the night.  There was no extra bleeding or problems.  Praise the LORD!


I Peter 5:7  "cast all your cares on Him, for He cares for you."

The Mayo Clinic Adventures Continue ...

Scottsdale Campus

Day Four

Today we go to the Mayo Clinic in Scottsdale for the first time.   The Scottsdale campus was the original Mayo Clinic building in Arizona and was built quite a distance from town.  The town has since nearly caught up to it but it's still a very beautiful setting in the Sonoran Desert.

Campus activity in Scottsdale is centered around a beautiful five-story outpatient clinic. The facility contains 240 exam rooms, an outpatient surgery center equipped for general anesthesia, a full-service laboratory, a pharmacy, a patient-education library, an endoscopy suite and a 188-seat auditorium for patient, staff and student education programs. Services in more than 66 medical and surgical disciplines are provided, including programs in cancer treatment and organ transplantation.

The commute today was a little MORE difficult.  At one point it took 35 minutes to travel 2/10th of a mile.  This was the week of the Phoenix Open golf tournament which is held about midway between the Mayo Clinic in Phoenix and the Mayo Clinic in Scottsdale.  The day we traveled to Scottsdale, 179,000 people attended the tournament.  Traffic was a little congested.  This was the only day we were not on time for one of our appointments, but still we were only 10 minutes late.

One of MANY clinic check ins

It is a BIG place ...

VERY big ... 

9:00am -- Scottsdale Campus -- Radiology.  Bone Mineral Analysis to determine bone density.

10:00am -- Scottsdale Campus -- Pulmonary Testing.  Pulmonary Function Test to determine health (or disease) of the lungs and airways.

11:30am -- Mayo Clinic Hospital -- Registration.  I know, right?  Just making sure we know what we're doing I guess.

12:00pm -- Mayo Clinic Hospital -- Cardiology Testing.  Exercise stress test with mVO2 measures capacity for exercise as your heart's ability to provide oxygen to your muscles during exercise.   This one didn't go so well, as Lee was able to last less than one minute.  In the past, this test generally started out slowly & the treadmill speed was gradually increased.  In this particular test, the speed was set for a trot almost as soon as he began. Within a few seconds, the treadmill was elevated (as if climbing a hill) and Lee's bp dropped to 70/? and the test was stopped immediately.  hmmmm  What does THAT mean?

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Day Five

It's FRIDAY!!  Once again we are heading out to Scottsdale in the dark of the early morning, our Christian radio station keeping us company.

8:00am -- Scottsdale Campus -- Psychiatry Consultation.  Need I say more??  Seriously, though this was an intense hour of questioning and probing to determine the emotional stability of a transplant candidate.  Kind of a rough way for a person (Lee) who says of the early morning doings, "not my finest hour."

There is beautiful art everywhere

10:00am -- Scottsdale Campus -- Cardiology.  Vascular Testing.  This was another test Lee has never undergone before.  A type of probe (like for oxygen monitors on the fingers) is placed on the toes and blood pressure cuff-like devices are place on both upper arms, thighs, and calves.  A Doppler probe is placed below each cuff as they are individually pressurized and held then released.  Lee found this test fascinating as well.
It's especially nice to have someone who will explain what they're doing and why as the testing is conducted.

12:00pm -- Mayo Clinic Specialty Bldg -- Transplant Social Worker Visit.  We were assigned our own social worker (well, we have to share her with some other folks in the transplant program).  Her job is to assess our family for ability to cope with the stress of transplantation and the ability to follow a rigorous treatment plan, both before and after transplantation.  She also discussed need for a support system, especially post transplantation.  It was a very informative meeting and we took home several pamphlets to read and glean.

2:00pm -- Mayo Clinic Specialty Bldg --  Transplant Dietitian Assessment.  Transplant Nutrition services.  Wow!  This was a very fact filled meeting.  I thought I had a pretty good handle on nutrition but there is so much more to learn.  We have a renewed appreciation for label reading, particularly for sodium, fats, and sugars.  Our dietitian gave us an overview of the diet after transplantation ---- WHEW!  more to learn.  Two foods that may never touch Lee's lips again post transplantation are pomegranates and grapefruit.  Never. Ever.  I really do not remember why.  It was the end of 5 grueling days and my brain could hold no more.

I want to make sure I thank all of you who have prayed for us throughout this week and will continue to pray for us in the months and years to come.  It is a blessing beyond measure.  Thank you also to family and friends who sent text messages and emailed notes of encouragement this week.  Even though I had little energy or time to respond, it meant so very, very much to us.  Thank you. Thank you.
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On the concourse level in Scottsdale

Day Six

Okay.  It's Monday again.  We've had 2 days to rest and try to regroup a bit.  Today is the not so fun test.  All of you over 50 will understand.

Scottsdale Atrium

10:00am -- Scottsdale Campus -- Colonography.  Look it up.  

10:00am -- Scottsdale Campus -- Radiology.  CT of Chest, Abdomen and Pelvis to help rule out the possibility of other diseases or tumors.

DONE and out of there!


Day 6 was a Monday.  The next few days there were calls back and forth several times.  Finally, towards the end of the week, we have a schedule for the next week.  Monday Lee will take another exercise stress test. Tuesday, he will have a heart catheterization.  

Thursdays are the days that the heart transplant team (doctors, nurses, specialists) get together to determine if a new candidate is ready and cleared to be place on the "List."  We will meet with our transplant doctor on Friday morning for the results of all of our testing and where we are in the transplant list world.

Prayers gratefully accepted.

Isaiah 41:10 fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

Our Adventures at the Mayo Clinic

The Mayo Clinic Hospital, Phoenix AZ

Lee was referred to and accepted for evaluation for the Heart Transplant Program at the Mayo Clinic in November, 2012. This initial appointment included meeting the transplant doctor and transplant surgeon.  They concurred with our UWMC transplant doctor that Lee would, in all likelihood, be placed on the heart transplant  waiting list as a STATUS II.  There are 3 levels (depending on severity of illness, symptoms) on the transplant waiting list:  1a (the highest priority), 1b (second highest priority) and 2 (least priority.)

Status 2 patients do not require intravenous medications while waiting for transplantation and, for the most part, are not hospitalized while they wait. Donor hearts would be offered to Status 2 patients when there are no Status 1A or Status 1B patients who would be suitable recipients.

There was some preliminary red tape to get out of the way, so the actual evaluation was set to begin in January 2013.  We live over 50 miles from the Phoenix Mayo Clinic.  To get there, we take the I-10 freeway to the Loop 101 to the very most northeastern part of Phoenix.  During rush hour.  Being from the PNW, I thought I'd been in traffic.  Ha!  The HOV lane was a sanity saver for us as we drove to and from the Mayo every day for 6 days.  The commute averaged about an hour and 15 minutes each way, although one day took an hour and 40 minutes one way.  We tried to live life in the fast lane for a week but it seems that traffic didn't always cooperate with us.

This is a long process and one that is still on-going.  I'm going to attempt to give an accounting of what the process of evaluation is like and hopefully answer some questions along the way.  We learned a LOT of things we had not previously considered. Not everything will be included due to my lack of literary skills, my overloaded memory cells, and some things are simply too personal to share in this public format.

Walking path outside the hospital

Day One

We were up before the mourning doves starting their cooing.  The first 30 minutes of the drive was in the dark and we moved along pretty well.  The sun began to creep up as we headed north on the Loop 101.  By the time we headed east again the sun was smack in our eyes, making the rush hour drive even MORE exciting.  Boy do our windows need cleaning!!  Lee was to go in fasting (no food after midnight the night before) for the labs to be drawn at 9:15am.  I packed a snack of peanut butter sandwiches and apples since there didn't seem to be much time between appointments.  As it turned out, the Mayo is very good at providing breaks for eating, resting, and getting from one place to another.  With our 12 page itinerary in hand, color coded for which building we were to report, we bravely (not really ... we were a little timid actually) stepped forward into the world of the Mayo.

8:00am  -- Mayo Clinic Specialty Bldg -- Met with Stacie, one of our heart transplant nurses.  The nurses we are assigned to work only with liver and/or heart transplant candidates.  Stacie went over some basic history with us and gave us an overview of the heart transplant program.  Our transplant team includes transplant doctors, surgeons, a transplant coordinator, a clinical nurse specialist, nurses, social workers, physical therapists, occupational therapists, cardiac rehab specialists, infectious disease doctors, dietitians, pharmacists and a financial rep.  Once listed, we will need to stay within 2 hours of the Mayo Clinic.  Our district covers CA, AZ, UT, NM, and NV.  A donor heart could come from someone in any of those states.  Besides all the tests and procedures at the Mayo, Lee will also need to get certification from his dentist that he has no infections in his teeth.  EVERYthing is checked out.

9:15am --  Mayo Clinic Specialty Bldg - Check in and LAB "visit"   HA!  I found it amusing that they call it a "visit" to the lab.  21 .... yes TWENTY-ONE vials of blood later, Lee came out looking a little pale.  I'm glad I packed those sandwiches!

9:30am -- Mayo Clinic Specialty Bldg -- LAB again.  This time for urine collection.  Lots of information can be found there.  ;-)

BREAK TO THE CAFETERIA --- I was looking for some liver to give Lee after all that blood, but he opted for some scrambled eggs instead.

and THAT's the rest of the story...

Harvey Atrium/Main Entrance Mayo Clinic

11:00am -- Mayo Clinic Specialty Bldg --  Transplant photo "visit"   Again with the "visiting!"   The technician asked if he minded having his photo taken.  Lee said, "As long as I don't end up on the wall of the post office."

11:15am -- Mayo Clinic Specialty Bldg --  Transplant Pre-certification.  We had no idea what this meant going in but it turned out to be an overview of the financial aspect.  Our financial coordinator (specialize only in heart and liver transplant candidates; so nice to have experts there) reviewed our insurance coverage and some general information.  We still have MUCH to learn about this part of the process.  One thing we have discovered is that our Medicare Advantage plan will cover a heart transplant (of course there are deductibles, limits, and co-pays) and the initial evaluation and tests but nothing else is covered at the Mayo Clinic.  Our primary care is done at the VA

12:15pm -- Mayo Clinic Hospital -- Registration appointment.  Yep.  Had to register separately from the Specialty Bldg

1:15pm -- Mayo Clinic Hospital -- Pulmonary Procedure/pulmonary testing - OXN.  Each appointment came with preparation instructions.  This one said to remove nail polish from one finger prior to testing.  We had fun with that one.  Lee picked up a piece of equipment to be taken home.  A monitor is placed on his finger and worn all night to track his oxygen.  He had to sign his life away before leaving with the equipment.

2:15pm -- Mayo Clinic Specialty Bldg -- Cardiology Testing.  Cardiology Electrocardiogram ECG, EKG shows the heart's rhythm and rate.

We left the Mayo Clinic around 3pm and headed for home.

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One of MANY check-in areas

Day Two

Another beautiful day in southern Arizona and we're on the road by 6:15am.   We made a quick stop at McDonald's for coffee and an egg mcmuffin to enjoy on the drive.

8:00am --  Mayo Clinic Hospital -- Pulmonary Procedure.  Basically, just returning the equipment from last night.

9:00am --  Mayo Clinic Hospital -- Radiology.  General chest X-ray helps to determine the health of the lungs.

BIG BREAK in the schedule due to having to rearrange several appointments.  We spent this time getting something to eat and shopping at a nearby mall.   It was a beautiful day so we got to stroll around a bit too.

2:30pm -- Mayo Clinic Specialty Bldg -- Radiology Ultrasound 3.  An ultrasound taken of the Carotid Artery.

3:15pm -- Mayo Clinic Specialty Bldg -- Radiology Ultrasound 3.  This ultrasound is for the veins in the legs; from the groin to the ankles.  

By the time we were done here, it was smack in the middle of the rush hour.  We decided to go relax at the Islands restaurant nearby.  It was delicious and just what we needed before the hour drive home.  We drove west into a gorgeous red sunset.  Even if I had taken a picture, it could not have captured the glory of the display.  It soothed my soul to see God's amazing handiwork at the end of this long day.

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Beautiful art, inside & out

Day Three

We were able to sleep in a little bit this morning.  YES!

8:50am --  Mayo Clinic Hospital -- Cardiology.   Echocardiogram shows the pumping action, size and valves of the heart.

11:00am --  Mayo Clinic Hospital -- Psychology Testing.  hmmmm this was interesting.  After taking a test mostly dealing with emotional stress, stability, etc.  Lee met with the psychiatrist to review his answers and for a little more probing.  SHEEESH!  They leave no stone unturned.  In all seriousness, 

1:00pm -- Mayo Clinic Specialty Bldg -- Lab.  Another laboratory "visit."

2:00pm -- Mayo Clinic Specialty Bldg -- Infectious disease consultation.  This was very interesting.  Some of the blood taken earlier in the week was to determine what diseases Lee has had and/or been immunized for -- measles, mumps, rubella, TB, Hep A, B, C and a host of other diseases, some of which I had never heard of.  There are some immunizations that Lee must have before being transplanted, since after transplantation the immune system is non-existent.  We are making arrangements to have these immunizations done at the VA, since our Medicare Advantage plan does not cover these to be done at the Mayo.

Our hands are raw ... 

2:45pm -- Mayo Clinic Hospital --  Transplant Caregiver Class.  This class was just for me and the 8 or 10 other family members who have a loved one undergoing evaluation for a heart, liver, or kidney transplant.  Did you know that the Mayo had a "transplant house" on the premises?  It's a building set up for families to stay in right after their loved one has a transplant.  It's set up with individual bedrooms/bathrooms with a shared kitchen and "family room."  What a blessing for those who have come a long distance.

3:15pm --  Mayo Clinic Specialty Bldg -- Cardiology.  Pacemaker interrogation.  This was one of Lee's favorites.  I am not kidding.  Being in electronics his entire adult life, he is still fascinated by the technology of the pacemaker and internal defibrillator.  The technician doing this test was really, really good and was able to show Lee so much that he had not know before.  There is a vast amount of information that can be gathered from the data collected by this small device.

By 4:15 we  were on the road home, once again enjoying a beautiful sunset.

The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge.  He is my shield and the horn of my salvation, my stronghold.    Psalm 18:2

Life in the slow lane ...

Being referred to the University of Washington Medical Center Cardiac Transplant Program was a huge step for us.  The "transplant cloud" that had hung over us like the grey Seattle mist since that day in 1992, had burst into a downpour, showering us with "what ifs" and "what now?".  After numerous tests and consultations, it was determined that Lee's health hovered right outside the need for transplantation.  Over the next few months there were many adjustments to Lee's medications, many of them making him feel much, much worse before he began to feel better.  Eventually, he DID feel better than he did in January, 2001 but he was still very limited in his daily activity.

• December 2002 - ICD (pacer, Medtronic GEM w/implanted defibrillator) surgery
• July 2007 - BiV/ICD surgery - Wire placed in left ventricle so pacer is now pacing both sides of his heart.  Implanted defibrillator still in place

... and so it goes.  We adjusted to "life in the slow lane" and enjoyed the life the Lord has blessed us with.  Our children are grown and serving God in their own churches.  We have 2 beautiful grandchildren.  When the gray drizzle of Western Washington's fall and winter and spring settles in, Lee had a difficult time getting out and walking as he should.  We both tend to hibernate, so we sold our beloved Genesis and now have a small home in the sunny desert of southwestern Arizona.  In Arizona, the sun shines nearly every day so Lee has been out walking, nearly every day.

January 17, 2012  Lee had not been feeling well for quite some time.  He just felt "off."  This day, he was determined to walk anyway.  When he was only about 1/2 mile from home he felt "funny."  He stopped, rested a few minutes, then turned around to head back home.  A few steps later he heard the ZZZZZZZZZZZAP of the ICD and felt the kick of the defibrillator.  Being the always level headed athlete that he was, he crouched down and rolled onto his back, avoiding a nasty head-knocking.  This was the first time his defibrillator had ever gone off and it saved his life.  He spent the next 5 days in a local hospital where he was placed on a new and powerful drug, Amiodarone.  This amazing  drug has suppressed the V-tach (ventricular tachycardia) that caused the ICD to fire but has many undesirable, long term side effects.  We hope Lee will be off of them soon.

When we went from our home in Arizona to the Pacific NW for the summer, we checked in at the UWMC and Dr. Levy for more tests and evaluations.  By the fall of 2012, Dr. Levy's recommendation was for Lee to be listed as a Status II (more on that later) on the heart transplant list.  Since our permanent home is now in the Phoenix area, we would need to try the Mayo Clinic for their heart transplant program.

1992 - 2001

The years that followed Lee's original open heart surgery for aortic valve replacement were filled with ups and downs.  We were on a learning curve for physical limitations, medication intolerance & interactions, the joys (NOT) of living with anti-coagulants in Lee's system and the progression of heart failure.  Still, the Lord is always good and we had been blessed with such a degree of health that we were able to enjoy life.  We just enjoyed it at a necessitated slower pace than most people.

One of the struggles Lee faced was being constantly tired, having diminished strength, and lacking energy to accomplish all that he wanted to in a day.  Everything he did took effort and at the end of each day, he was exhausted.  A dear friend, Roger, was a hospital chaplain at the time of one of Lee's surgeries.   He gave Lee an analogy that was SO helpful and has stayed with him, even until now.  It went something like this:

Just imagine that God gives you a bag of 10 coins (representing your energy) each day.  Each activity you do will cost.  You will need to determine how much energy equals one coin and budget accordingly.  If you choose to spend 8 coins by mowing the lawn in the morning, that leaves you only 2 coins of energy for the rest of the day.  If that's the case, then you're probably going to start the next day in "energy debt."  We all know that getting out of debt is very difficult.  The moral of the story is:  spend your coins wisely and distribute them as evenly as possible throughout the day.  

Such a simple idea and for many years, we used this "bag of coins" analogy to gauge where Lee was energy/fatigue wise.  He would do some work on a car, for example and come in just exhausted.  He'd say "I used 5 coins on that job."  I knew exactly what that meant ... he needed to rest and recuperate before he did ANYthing else.   Each day was different, but by keeping track of his "coins," he was able to live a fuller life with less frustration.  Lee calls it "Life in the Slow Lane."

In the meantime, Lee's heart condition required more and more medications, surgeries and devices.  The medications are for keeping his already low blood pressure even lower (so the heart doesn't have to work as hard), helping with the arrhythmias, preventing fluid overload (diuretics), and opening the blood vessels ease blood flow.   Lee's health was followed by cardiologists with appointments 3 to 4 times each year.  Another issue for people with CHF is kidney (renal) failure, so kidney function is constantly monitored also.  The major events during these years:

• May 1998       Pacemaker implanted.  CPI 1130 generator, single lead
• January 2001  Pacemaker replaced with new Guidant 1184 pacer
• Dr. Broudy (our cardiologist) tells us to "stop and smell the roses" and recommends immediate retirement from Boeing
• January 2001  Referred to: UW MedCtr Heart Transplant Program, Dr. Levy

In the beginning ...

The year was 1992.  Lee and I were approaching our 20th wedding anniversary.  We had two teenagers; Sarah 16 and Seth 14 and 9 year old Katie.  Lee was working for Boeing as an instructor, which required long hours of studying and preparation for the many different classes he taught.  The last couple of years had become more difficult for him.  He was tired.  Very tired.  

Lee had always been athletic and enjoyed lots of physical activity.  He was an excellent golfer, swimmer (served as a lifeguard while in Viet Nam) and enjoyed backpacking and snow skiing as well as playing on rec teams for softball and basketball.  When Lee was in junior high, his family doctor detected a slight heart murmur but attributed it to his rapid growth spurt.  Most doctors, in the years that followed, didn't even hear the murmur.  Lee served in the USAF and was told he had an "athletic heart."  His heart rate was slow and strong.  We had built a 38' sailboat (Genesis) and lived aboard with our kids for 3 1/2 years.  That required a lot of physical stamina! 

When the tiredness began to be more and more of the norm, we attributed it to "getting older."  After all, he WAS in his 40's now.  He was just slowing down.  By the autumn of 1992, Lee was taking naps ... lots and lots of naps.  Still, he thought it was just the rigorous teaching schedule and being in his 40's.  When a close friend he worked with was diagnosed with cancer, Lee decided it was time to have a physical himself.

WHAT A SHOCK!  The EKG showed some troubling rhythms and the doctor could hear a very distinctive heart murmur.  He was referred to a cardiologist in Seattle.  Within a very short time, we were told that Lee's aortic valve was leaking and leaking badly (valvular regurgitation.)  Our only option was open heart surgery.  In December, 1992, a mechanical valve (St. Jude's Valve made of pyrolytic carbon or graphite) replaced Lee's defective aortic valve.  From the surgery we learned that Lee's aortic valve had been defective from birth:  a bicuspid valve, rather than a normal tricuspid valve. Over the years, it had gradually degraded to a point of near uselessness.  We praise God for His goodness and for His leading us to a wonderful team of cardiologists and surgeons before it was too late.  The surgery was successful but damage to the heart was irreversible. The diagnosis at this time:  Congestive Heart Failure (CHF) and Atrial Fibrillation (A-fib.)  We were told that someday, he would likely be a heart transplant candidate.  Lee would be on an anti-coagulant (Coumadin) the rest of his life to prevent blood clots in the heart valve.  

A week after this surgery, Lee felt like a new man!  The kids had their Papa back.  He had energy.  The new valve was not a cure-all but the comparison between the old Lee and the new Lee was amazing.  It was only in retrospect that I truly realized how bad Lee's color had been (he was a pale gray color) and how much he had struggled simply to get out of bed each morning.