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Wednesday, July 16, 2014

12 days out

Two weeks ago today I got the call.  I have been out of the hospital since last Thursday, July 10th.  This morning I walked 2 miles on the treadmill.  I don't find that particularly impressive but what I felt when I walked was.  My heart is denervated, meaning the main nerve to my heart from my brain is cut.  This happens to all transplant patients.  The effect of which is several things.  First, my sympathetic nervous system is no longer connected with my heart.  So if the smoke alarm went off in my house my heart would keep beating at the same rate.  After a few minutes my heart would catch up to my body and start to pump harder.  This impacts me when working out because I need to warm up slowly, like a cold car engine in a MN winter.  Secondly, my resting heart rate is higher than the normal persons because the vegus nerve, the one that is cut, is the brake to your heart.  I have no break now so my resting heart rate is 85-90 BPM.  At any rate, once I got warmed up I was able to turn on my music and hum along and feel stronger than I would have thought 12 days after heart transplant.  The vegus nerve regenerates less than 5% of the time, but the body adapts to things.

I have been fighting some terrible side effects of one of the drugs, cell cept.  I have lost 20 lb. in three days and have no real appetite.  Today for the first time in three days this seem to be slightly better.  When one approaches transplant a certain amount of research is done, education etc.  But until it is experienced first hand it is hard to fully understand the way you will experience things.  Brushing teeth water bottle water, constant bitter/iron taste in your mouth, diarrhea.  No complaints here, one day at a time.  But this is definitely a test.

My driveline wound is closing.  It is weird to look at my stomach and see what looks like an apple corer was taken to my stomach.  Tomorrow is another biopsy and right heart catheterization.  And I get my stitches out.

Erik Compton tee's it up tomorrow morning at the British Open, cannot wait to see he take the Claret Jug.

Strength and Honor.

Sunday, July 13, 2014

Free at Last

Good morning.  I am happy to say that I am writing from the freedom of my apartment in sunny Burbank, California.  On Wednesday July 9th I have my first major test in having a right heart catheterization and a biopsy on my new heart.  My RHC numbers were perfect and I received word on Thursday morning that I had zero rejection in my new heart.  Also Thursday morning I had another echocardiogram and the Ejection Fraction (EF) was 60, and I was discharged that afternoon.  Amazing that 1 week ago I was dying, waiting in a hospital for 75 days, and one week later I have no more heart disease and am out of the hospital.  I was told I was the 56th transplant this year at Cedars and the fastest heart transplant discharge ever, 6 days.  The past two days have been a mix of moving out of the hospital and into an apartment, doing small errands, and relaxing.  The only pain I have is in my sternum when I get up out of bed.  Other than that I have had no issues, although getting used to the meds has not been without issues, but no complaints.  I was scrubbing tape adhesive off of my yesterday and realized I can see my pulse in my ankle, pounding.  Things I had forgotten I would see/experience.

Going to watch the World Cup final today.  I have lost 8 pounds since I got out of the hospital, I suspect mostly water/fluid weight.  I had 25 units of blood products transfused during my transplant surgery and that fluid accumulates and needs to go somewhere.  Not the diet you might choose, but I will take the weight loss:-)

There is a summer transplant picnic today in Los Angeles at Veteran's park.  I had to call the transplant coordinator this morning and asked if I was going to see her at the picnic.  She was shocked that I knew anything about it and why did I think I could go?!  I forget that there are a huge rules that you need to follow and I am in between the inpatient program and outpatient program, two totally different teams.  I got to clinic tomorrow morning and I think some of the confusion will get cleared up.

So today is day 3 of my new life, and I love it.  The British Open is this week and I will be rooting mightily for Erick Compton.

Monday, July 7, 2014

Transplant plus three days

Hello from the step down unit.  I was moved out to the floor this morning at 10 AM.  It has been an up and down couple of days.  I have been quite groggy and dealing with some pain, which I don't remember from three years ago.  I think it likely that I was so sick three years ago that I don't remember this initial part.  Friday was very uncomfortable being extubated and then reintubated.  I was feverish and sweating profusely the entire day and night.  I got almost no sleep.  Saturday was slightly better but I was able to exist with just the CPAP mask and my O2 Sats were up.  Sunday was slightly better but as I have started the immunosuppression I have had headaches, nausea, and some dizziness.  Last night though I started to feel better and was able to sit in a chair for three hours.  My hands are completely numb, very hard for me to text or type.  I also have fluid in my hands and legs.  That being said I am finally clearing the haze and starting to have some appetite.  I am on strong antibiotics for my driveline infection, some anti diabetic  meds to keep my sugars in order when I eat, and Prograf and Cellcept for immunuspuression.

I have some pain in the chest cavity and under my ribs on the back side by my shoulder blades. I am guessing this is do to the chest tubes, of which there are 4.  The plan of attack for this week is to keep removing tubes from my chest, training tomorrow, biopsy on Wednesday and a goal for discharge on Thursday.  It is crazy, I can't hardly believe it.  A lot could change between now and then.

In a surprise, last weekend Brad Thor called me.  Check out his website at  He has been following me for some time and he sent me a signed copy of his new book.  Super exciting to know you have been noticed.  I received a copy of his book this morning and can't wait to sit down and read it.

Sunday, July 6, 2014

2 Days Out

I have been awake now for nearly two days.  Very groggy and some good drugs.  Made my first walk this morning.

Thursday, July 3, 2014

Operation DAVL

Last night at 8:00 PM PST I received the call I have been waiting for from the Transplant Coordinator.  The phone rang in the room, I answered and heard, "Hi Pete, this is Jennifer, how are you?"  I could tell she was in her car and she was smiling.  I asked, "Fine, what's up?"  Then Jen said, "What are you doing later, have any plans?  We have a heart for you!"  I was shocked and surprised and my hands were shaking.  The nurse came in immediately and drew about 20 vials of blood and I met with the surgeon, and a cardiologist.  About 2 AM things settled down and I tried to lay down and get some sleep.  No such luck.  People started visiting me again around 6 AM to check in and begin the daily rounding. 

Currently the team does not have a Operating Room (OR) time.  OR time is when I say my goodbyes and I am sent into the surgical team's care.  The donor is local to LA, young, and healthy.  The delay in the surgery time is finding a recipient for the lungs.

I have decided to give my surgery a codename, Operation DAVL, pronounced "Devil!"  The astute observer will notice that DAVL is actually LVAD backwards.  This little pun represents the removal of my LVAD and the start of my new life.  Barring anything changing at this point my next post will be after my surgery:-)

Sunday, June 29, 2014

Front Row Seat

So it has been 18 days today since I arrived here in Hollywood.  Nothing exciting has happened yet although we made quite the commotion watching the US vs. Portugal World Cup game.  My friends at work joined me in rooting for Erik Compton at the US Open.  He has done so much to bring awareness to heart disease and transplantation and, on top of that, he is an amazing golfer.  To my chagrin I receive a call from a great friend last Sunday morning who was at the CVS Charity Classic in Rhode Island.  While there he happened to bump into Erik.  So he gave me a call and I talked to Erik for about 10 minutes, which made my day.  The thing about heart disease is that inside of this fraternity that nobody would ever want to be in are amazing stories of the human condition.  People have had two choices, either 1) fold and get hospice, or 2) take charge and stand up to the fight. To meet people who survived but then return to normal life and then to the battlefield is just that much more inspiring.

On to my front row seat.  Yesterday morning it became obvious that the patient in the room adjacent to mine was to be transplanted.  Through the course of the day a steady stream of visitors came in along with a great number of nurses and doctors.  I learned late in the day that he was to receive a heart and kidney, a rare double transplant.  I felt distracted the entire day watching everyone come and go, listening to the laughter and story telling and the cheers for the Brazil soccer game.  He left for the OR at 930 last night and I heard in walking the halls that his surgery finished around 430 AM.  I hope and pray that he is resting comfortably and with a new lease on life.  This was the first time I have been able to watch this process up close and see with my own eyes how things go down.  I couldn't help but wonder how things will play out for me.

I was told by the transplant coordinator on Thursday morning that two offers had come in this week for me but were not good matches.  So it does appear imminent.  Also had a chat with the doctors on Monday morning about all of the rules and maintaining some level of independence and dignity.  They have willingly accommodated me.  I would also tell any patient that is ever transferred for care at another facility to make a list of supplies that they currently use (type, quantity, brand, sku/part number) because not all hospitals have the same supplies.

When I went to bed last night I had walked 72 miles in laps around the floor.  I am trying to walk 6 miles per day just to maintain some level of fitness and readiness.  I am able to go outside for 30 minutes a day, the irony of which is that death row inmates get 60 minutes of sunshine and exercise everyday but I only get 30.  I have share that observation to the team, it is not however met with appreciation.

Lastly, my math was wrong last week, I forgot a week.  My total time in the hospital now is 65 days.  Once I am transplanted I am shooting to be out of the  hospital in 7 days.

Two hours till the Yankee's v. Red Sox game.  Wonder if Napoli get's one in the ear hole tonight after talking smack about Tanaka?

Friday, June 20, 2014


Tomorrow is 300 days of 1A time and it marks 50 straight days in the hospital for me.  Things have settled into a routine here at Cedars.  The healthcare is awesome and the team has begun to know me.  With the familiarity comes more privileges....more rope.  I am now able to walk by myself, unescorted, and if I wake up to use the rest room I don't set off a alarm when I get out of bed.  I get my BP taken 12-15 times a day depending on the experience of the nurse.  More experienced nurses are more comfortable tailoring the rules to meet my needs.  The younger nurses are a bit more cautious; I have had over 2 pints of blood drawn and my BPs are low. Every time they take my pressures the junior nurses freak out that something is wrong.  Then I explain that I have, as of 11 AM PST today, walked 40 miles in laps around the floor since I got to step down last week and that I am not going to drop dead.  I get 30-45 minutes of sunshine every day when they take the device patients outside.  We are some crew.....3-4 Total Artificial Hearts whooshing, and 3 VAD patients.  The fact that we are limited in our outside access only lends itself to the feeling that we are in Max Security prison.

Overall things are proceeding smoothly.  There is a Capital Grille across the street and I have found myself craving a good steak.  Once I am transplanted I won't be able to have a medium rare steak every again, nor raw fish.

I sent a note to my surgical team and laid out my wishes for the surgery:

  1. I would like to see my old heart next to my new heart (Human heart is the size of your fist, diseased hearts are typically the size of a football)
  2. Would like my pump back and my ICD back
  3. Would like to see a picture of the driveline fracture so I can see what really happened
  4. Cosmetic staples.  Don't want to be in the zipper club
That's all for now.