18 months

Happy Holiday's.  Just had my 18 month clinic this past week and things went great.  My BP was elevated but I had a poor night sleep the night before.

It has been nearly 6 months since my father passed.  Not a day goes by that I don't reflect on how sad it is and how much I miss him.  After transplant I would say that I don't spend any time thinking about my heart any more, but it's hard for it to not always be on my mind.  Thoughts of my dad have replaced that.

I was out for a bit today and I saw an eagle.  I hadn't seen one in weeks.  It reminded me that I can be strong, and overcome and do the things that I want.  It has already started with my heart and I can keep building on that.   It is the story of the human condition.

On to Spain

I returned last Sunday from Buenos Aires.  We left Saturday morning from Mar Del Plata and took a bus to the airport.  Unlike the arrival which took nearly 8 hours from airport to the hotel, this took only 5 hours in return.  Things are different in a foreign county than in the US.  It sounds so obvious but until I had experienced it first-hand I don’t think I could have understood.  Things like which terminal at the airport my flight departed from, when to be there, when do the airlines show up, what does security look like.  I found it particularly funny going through security in Argentina as I nearly stripped down and spread my legs, the security people were like, “no, no, that is not necessary.  You can keep everything on and just walk through the scanner.”  But then when I got to the gate and was called to board my bag got dumped, turned upside down and shaken.  I don’t know what would have fallen out that would have been illegal but……..I was thoroughly checked and deemed worthy to board.

I ended up competing in golf, swimming, and track.  I ran the 5k on Monday morning in 26:00.  This was 4:30 faster than any time I have run post-transplant and would have won the 40-49 age group in the previous games.  I came in 15^thJ  In swimming I placed 4^th in all of my events and was quite close to medaling.  The competition was quite impressive in swimming with many athletes competing all around the world in Masters swimming.  That I could compete and quite nearly place with no training was a blessing and left me anxious for the next games.  Competing in a 4x100 relay in a pool that once hosted the Pan Am games, filled with people and music blaring was motivating and I won’t forget that experience.

The games went quickly with something to do nearly every day.  For me the most exciting part was being surrounded by other transplant patients, nearly 1000 of us.  I have an affinity towards heart transplant patients, I cannot help it.  But I saw that kidneys looked for kidneys, livers and lungs the same thing.   I also met athletes who had stem cell and bone marrow transplant, and even a young man from England who had a bowel transplant.  Talk about a stinky situationJ  Nobody considered themselves a patient, to a person an athlete.  Comradery abounds with competitors and supporters cheering just as hard for those who finish last as they do for the winners. 

I had the pleasure of meeting my new friend Matt, from Washington state.  He is 43 and is 5 years post-transplant.  We quickly bonded as swimmers.  Matt set 5 world records for the Transplant Games and was definitely popular amongst the other athletes.  We also met a young woman from Germany who was 14 years post-transplant.  Like Matt and me she had had a LVAD previously.  Everyone is quick to compare scars and stories. 

The hardest part though for me was leaving.  When I first arrived and met the rest of team USA I was often reminded that the first games you attend are special.  People are quick to share their stories and having competed on different continents, against certain people, long standing rivalries.  With my experiences now in hand goodbyes took the form of “see you in two years and take care of yourself.  Be healthy.”  Something I wasn’t prepared for was the solemn remembrances of athletes fighting cancer or some other complication.  Very heartfelt.

We in the US have some work to do.  While we did great at the games, finishing 4^th overall, in some sports like swimming we were in awe of Great Britain, Greece, Netherlands, and Italy, to name a few.  In talking with other athletes I learned that when you are placed on the transplant list that other patients begin recruiting you to compete post-transplant.  This is done to provide you a sense of optimism and hope and something to aspire to.  In my experience, I accidently discovered the World Transplant games, an experience shared by other athletes.  I look forward to the day where transplant patients “new normal” looks like the old normal and may be better.

I am fortunate that I have my health today, I am always one blood test from a complication.  But the optimism, the energy, and the enthusiasm for life at these games was amazing.  I cannot wait for Spain in two years.  I did my absolute best and tried to carry my dad with me in every event.  He was on my mind throughout.  While we didn’t do the games together I know he was with me.

Day 1 Update

Nearly After 28 hours of travel I made it to the Gran Hotel Provincial in Mar del Plata last night. 1 hour lay over in Atlanta followed by 10 hours in the air to Buenos Aires was Relatively smooth. We had to wait 3.5 hours in the airport but for others to arrive Other than that things went smoothly through customs. Then we had a 450km bus ride That Took us 7.5 hours and included us getting lost and stuck in the middle of a road. But we made it, and today was registration and the opening ceremonies. I was Asked by my teammates to carry the flag for Team USA and was honored to do so. Tomorrow is the first event, the 5K run. Information is quite slow down here from the organizing Officials, Often arriving just in time to make us scramble. Looking forward to seeing the competition start tomorrow.

Transplant Olympics

I am leaving tomorrow for Buenos Aires, Argentina to participate in the World Transplant Games.
Transplant Olympics
Buenos Aires games

It will be a quick week, 6 days, sandwiched between long plane flights on either side.  I am excited to be around other survivors, to meet others who have are survivors.  It is also a chance to honor my father, to do as he would have wanted me to do, and not waste an opportunity.  I will post updates daily with pictures to share this experience.

The End of Book 1

I return home tomorrow after 10 days with my family in NY.  We buried our dad Thursday of last week.  The wake was the night before and went a full hour longer than it was planned.   Hard to capture in words the loss I feel right now.  Call me naive, even having gone through this as a patient, but I never considered an adverse outcome and never death when my dad went into surgery.  I wish I knew that when I said goodbye as I was boarding the plane that it would be the last time I ever talked to my dad  with him fully healthy and in his right mind.  When I left the hospital three weeks ago I never ever thought I would never see him again.  I have been struggling that I may have pushed him into getting a transplant because I did when he wasn't ready.

I have come to view his passing, at least right now, as the "end" of Book 1.  I have been asked to write a book and consider doing a TED talk after my experience last summer and I balk at that, it seems attention seeking.  I always said in due time I will understand why and how.  My father passed away at 7: 54 EST on July 4th, 2015.  I came out of the OR and my parents met me in the CICU at Cedars Sinai, breathing on my own, at 7:54 EST on July 4th, 2014.  Literally 1 year to the minute from when I took my first breaths he took his last.  I am resolved, committed, that his passing will not be in vain, for naught.  For all that we have done and learned in the last 70 years in heart disease, and for all the literature that is out there now, we really haven't figured all that much out.  We know so much, but there is SO MUCH MORE to be learned.  I will take this on and find meaning in this so that others won't feel the same profound loss that we feel.

My Hero

My father passed away this morning at 7:54 EST from complications with his transplant.  It was exactly 30 days from his surgery.  His time of death was nearly the exact time he saw me after my transplant surgery 1 year ago today.

I am devastated as is my family.  Life is not fair and I feel like I have been kicked in the face with that fact.  I have been waiting to share this transplant experience with my father.

My dad used to tell me when his father died that the thing that he lost that he missed the most, other than his dad, was having someone to call and talk to, to share with, to get a different and honest perspective on something.  I want so badly to call him and ask him how to deal with this because I don't have any idea what to do.....................

He was 72 years,  164 days old, which is 20 years too young.

I miss you dad

1 Year on July 4th

It has been a little over six months since I last posted.  A lot has happened in that time.  I turned 42:-)  Also, I had my 1 year exam three days ago and I received a complete clean bill of health.  My cardiac function is outstanding and my doctors are very happy about my progress.  I have some tricuspid valve regurgitation which is more than the doctors want but I can live with it for decades before any treatment is required, provided it remains stable.  Also I had some protein in my urine that the doctors think is likely exercise related so that will be watched,   But I have to say that after 12 months things are better than I could have ever hoped.  All my exams have been great these past six months and we now move in to maintenance mode.

My dad received his call on May 28th at Newark Beth Israel.  He was at the hospital for a visit and the Dr. told him that they had just accepted a heart for my dad.  He went into the OR at 5 PM EST that day.  His new heart started beating on its own at 3 AM EST on May 29th.  It has been a long journey for my dad, but he makes positive steps every day.  I cannot wait for him to get home and get his life back.

This week has been filled with many emotions.  While I am excited about the milestone I am also filled with a heavy heart thinking of my donor and his family.  Where was he a year ago, where is his family now, are they ok?  I want to know who my donor was and what his goals in life were......who he was, what he wanted to be, what dreams did he have?  I want to honor the gift I have been given, the sacrifice that was made and make something good of this.

I received a call today from one of my great friends Dennis.  He received his call this morning, that he too would received the gift of life.  He is in surgery as I write this.  When he called me he knew that today was my day and he was excited to share with me that today was his day.

I saw an eagle today, it had been too long since I saw one flying.  It was beautiful, graceful, and amazing.

What I am thankful for

I had my 5 month biopsy today.  I think 5 months was officially a few days ago, but who cares, 5 months, wow.  I can say unequivocally what I am thankful for is my donor family and the thoughts and prayers the last 4 years I have received.  One of the NPs I saw today said once you get to about 6 months post transplant you become in maintenance mode.  That is an interesting observation because I have been in the heart failure program since 2002, and now I am not:-)    I know transplant is not a destination, it is very much a journey with many twists and turns.   But I am here thanks to the care I have received and the amazing graciousness of my donor family.

I have been thinking about reaching out, initiating contact with my donor family.  Now that I am beyond 90 days I can do so, but it is the sole discretion of the donor family to respond.  I want to tell them how sorry I am for their loss, how thankful I am for their courage in their darkest hour, and how this gift has impacted my life. 

In the past month I have been running 3.5 miles, I have been biking up to 30 miles on a bike, doing an hour on the elliptical etc.  From that standpoint I feel healthy.  I think I have grown a lot during this time as well.  Some of the things I have learner:

1. Its ok to have expectations - we just refer to them as goals
2. Goof-off and other commercial grade adhesive removers actually have a place in medicine
3. This journey is both physical and emotional
1. For those that have had time to prepare due to a lengthy disease, as I did, the first part is emotional (think of this as grieving), then physical (surgery trauma), and then emotional again.  Once the wounds heal it is easy to contemplate where you are in life and where you are going
2. For others who have had a quick journey, a rapid descent into heart failure, the emotional tends to dominate.  Fear, why me, what does this mean........
4. It is ok to be afraid, to be tired, to need space.  You have to be your own advocate throughout the process, to include pushing back
5. Being a heart disease patient turns you into the family and friend cardiologist.  It is shocking how much you learn along the way.  I relate it to being a Veteran and constantly being asked my views on politics and what I think about the latest troop deployment
6. It CAN always be worse.  I used to say this to my cycle class when I was teaching.  You never know what someone else is dealing with.  In truth I secretly though it can't be much worse for me.  Then I met another transplant patient in CA.  He had a total artificial heart (meaning he had no heart inside him and was hooked up to a backpack that wooshed all the time), he had cardiac amyloidosis (cancer), and needed a kidney transplant too.  He and I were both transplanted on the same day, July 4th.  I saw him in clinic several times afterwards but one day in particular sticks out.  He had just been into see the kidney doctor where they removed a stent from his kidney.  The shortest path to the kidney is through.............  You get the point.  He wins, that was worse!!!  And yet he was happy to be alive.

I saw a friend today at the hospital.  He and I did time together last spring for a couple of  weeks.  There was a group of us that would gather to watch the NHL playoffs in the lounge.  It was so great to see someone, albeit slightly behind me in the journey, and say "Yes, it is definitely worth it."  It was what he needed to hear and it is what I believe.

The new movie "Unbroken" is coming out.  The story is about Louis Zamperini, and he was a B24 pilot like my grandfather.  I had read the book a couple of years ago, and it is simply amazing.  He passed away on July 3rd late in the day in Los Angeles.  The headlines in the paper the next day, the day I received my heart, are about Louis Zamperini.    Every time I see the trailer it takes me back to that day.

Enough ramblings for today.  Thanks for reading this, I hope it is helpful to others out there.

3 Months today!

It has been 3 months today, exactly.  Okay, maybe it has been 13 weeks if you count the days:-)  I feel great.  I have had 2 biopsies since I have been home and both have been 0R.  Very exciting since I had 2 straight 1Rs before I came home.  The trip through LAX with my breathing mask on, hauling a guitar and 4 bags is a distant memory.  People told me heading into my procedure that at 90 days they really started to feel good.  I can confirm that is the case.  This past week I found myself thinking I really do feel better.  I have been running 3-3.5 miles 2 times a week and doing the elliptical for 45 minutes on the other days.  Cardiac rehab was completed after 1 visit and some debate, no need I was told.  Work has been good, but exceedingly busy.  I find a get pretty tired after a full day, sometimes I step back and remind myself that it has only been 12 weeks.

Random thought of the day. Pay attention next time you go to a restaurant or a cafeteria.  Look at the food preparers and notice the gloves they wear.  I asked someone to change them this week and I got a very nasty look and the person said, "I have to wear them, it is a cleanliness rule."  My question is this......what good do the gloves do for me and the cleanliness of my food if the person touches every thing in the kitchen with those gloves on before my food.  Does it do anything other than keep their hands clean?  You think about these things when every little thing could kill you.  Just saying...............

No place like home

Hello MN.  I arrived home last night about 7 PM and was greeted by 2 hours of rush hour traffic.  Wait, I thought I left LA behind:-)  I had my final clinic appointment the day before and it went well.  I had a little rejection again, 1R, but the doctors said don't worry at all.  Totally normal.  The rest of my tests were totally normal and my cardiac function was spectacular again.  I have started running since I last posted.  My doctors told me the week before to go live my life.  Shower, swim, run, lift weights, whatever I want to do.  I started to run on the 21st and all I could muster was .5 mile.  I didn't have any expectations, or I tried not to, but I admit to feeling disappointed.  I walked a 0.25 mile and then ran a 0.25 mile.  The next day I did two 0.5 mile runs.  Two days ago I ran 1 mile without stopping twice.  I won't beat anyone any time soon, but it doesn't matter.  My legs have been very sore.  I guess I lost muscle not having run for 3.5 years, but it feels like it is coming back quickly.  I am getting stronger every day.

It feels weird being home, not having been here for the past 5 months.  At the same time it feels great.  One fun thing I did last night was throw away all my old VAD accessories.  Things like harnesses, holsters, etc. that I wont ever need again.  Didn't feel bad at all!   I can't wait to play my guitar later today, no hum or buzz from my pump ever again.

5 Weeks later...........(Act of War by Brad Thor review)

Tomorrow makes 5 weeks.  I have one week until I reach the magic 6 week mark.  At 6 weeks my sternum is considered healed and I can start cardiac rehab and run.  I have not run since about a month before I got my LVAD.  At that point I couldn't run for 5 minutes without have to stop because I thought I was going to pass out.  Yesterday I walked 4 miles on the treadmill in 57:30.  I think it's pretty good that I am one month out and walking sub 15 minute miles.  I feel like I could run now but I don't want to risk anything at this point and jeopardize the gift I have received.  My first refill of pills came today.  The box was so big I thought someone shipped me a basketball, lol.  I had heard horror stories of  post transplant taking 70 pills a day.  So far I am taking about 15 twice a day.

I finished "Act of War" by Brad Thor last week.  True to form 5 pages in I was hooked.  I love Brad's books because they are realistic, informed, relevant, and as a veteran I relate to his views and perspectives.  I am so thankful that Brad mailed me a copy of this and I hope that he and I connect during my last three weeks here.  I highly recommend this book and anything Brad has written.  Can't wait to read the next one.

Three weeks later

Day 23 and all is well.  I have had 3 biopsies so far and all have been ZERO rejection, or 0R.  In addition my Ejection Fraction is 70.  My doctors have told me I got a Porsche for a heart.  My cardiac output is 7.1, a normal healthy heart is 5.5.  I have been feeling better each day and am walking 2 miles on the treadmill 3-4 times per week.  The next couple of weeks are going to be intense with biopsies, an angiogram, and clinic visits.  I hope to get my ICD and pump back.  If all goes well I will be home by Labor Day weekend.  Woot Woot!

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.

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.

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 www.bradthor.com.  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.

2 Days Out

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

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:-)

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?

300

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 closure....no staples.  Don't want to be in the zipper club

That's all for now.

Speeding ticket

Today started with a call from the Transplant Coordinator telling me that my accrued wait time has been assigned to Cedars, and is no longer at Abbot.  Any transplant candidate can be listed at multiple centers but only one can be your primary center.  Cedars is now my primary center with all my time bumping me to the top.  There have been 80 transplants here this year and 6 in the past week.  Things definitely feel day to day at this point never knowing if today is the day the call comes.

I have met 4 Total Artificial Heart patients.  Something totally new for me and very Star Trek.  Look up Syncardia Total Artificial Heart.  Great option for patients that have no other options left but very weird to see someone wheeling a suitcase size pump around that is making noise.

I have come to appreciate the value of being at such a large center where Transplants are as common place as knee procedures.  The doctors and surgeons here are amazing and love what they do.  Totally takes the edge off of any fears.

I was warned last evening about walking too fast.  I have set a goal of walking 5 miles around the floor each day (6 laps per mile).  I did 5 yesterday and 6 today, but I digress.  I was told I am walking too fast and the point is not to walk fast but to walk for a length of time.  Now coming from someone who looked like she walked for neither time or speed I didn't take this very well.  I told her that was the problem with heart disease, people constantly tell you to lower your expectations.  In addition I said that if I walked faster I could walk further, and since I had nowhere to be what exactly did it matter anyway?  Seriously, WTF!!!