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| 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.
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| Walking path outside the hospital |
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.
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| and THAT's the rest of the story... |
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| 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 |
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 |
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.
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.
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| 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
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