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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

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.




Monday, June 16, 2014

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!!!


Saturday, June 14, 2014

Day 3 - On The List

Yesterday was another very long day, more blood, xrays, mental gymnastics etc.  In the end the Transplant committee formally approved me to be listed as a 1A so I am on the list here at Cedars.  The approval came late enough that all of my accrued wait time from Abbot in MN won't make the regional list, most likely, until Monday.  Not sure if it matters with the status 2 transplants we have done here this week (meaning there are not many 1As or 1Bs).  I was moved out of the Cardiac ICU at 3 PM to the step down unit out on the floor.  My awesome nurse, Alfred, came in and said we have 10 minutes to pack you up and move you.  All the sudden 8 people were in my room cramming stuff in bags and forcing me into a wheel chair.  Once I got to my new room I had most of the wires taken off of me (SPO2, BP Cuff, and the telemetry cable).  I still have tele on me but it is the portable that I can stick in my binder.  I was able to brush my teeth and wash my hair and generally feel human again.

I also was able to finally get off the cardiac diet (no salt, no fat, no taste).  I think the nurses were happy to get rid of me.  It has taken about 2 days but the docs and nurses have finally started to warm up to my special brand of sarcasm and self deprecating humor.  My BP this morning was 75/45 which is VERY low, but I think that is due to the 2 pints of blood I have given. I have had some good nights sleep here surprisingly.  Today we get to go outside to the plaza for 45 minutes, all of the LVAD patients and total artificial heart patients (TAH).

At this point it feels like the wait, the race to the finish line, is here.  There is a long walk way in the hallway, 6 laps is a mile.  My goal is to walk 5 miles per day while waiting.  Also looking forward to finally being able to play my guitar again.

Thursday, June 12, 2014

Hollywood

Yesterday morning at 730 AM I was picked up by LifeLink III and taken by Air Ambulance to Hollywood, CA.  The trip was in two parts.  The first was to Colorado to a regional airport by Littleton and after a short refueling we departed for Bob Hope Airport in Burbank, CA.  The fun started shortly after the second flight departed when the oxygen masks fell out of the ceiling and the temperature started to rise.  For the next two hours our flight temperature hovered around 108 degrees.  I was hot but the poor flight medics were in flight suits and were dripping with sweat.  They used the telemetry box temperature probe to monitor the cabin temp.  All in all the flight was great.

I was then met by the Los Angeles critical care ambulance team who transported me to the bowels of Cedars Sinai.  We went through downtown Hollywood, down Sunset Boulevard and saw all the touristy stuff.

I arrived about 1 PM PT to Cedars and was transported to Room 6S28 in the cardiac ICU.  I have met my new surgeon, Dr. Arabia, and all of the ICU staff.  Dr. Arabia initially seemed perplexed about why my pump is not just being replaced and after some discussion left to do more research.  I have had 20 tubes of blood drawn, swabs of every hole in my body for infection, visits with Infectious disease, the IV team, 10 x-rays, Cat Scan of my chest and abdomen, interviewed by the docs, transplant coordinator, a surgical fellow, a social worker, and am expecting a psychiatrist shortly.  However, it does appear after all of this that I should be listed for transplant at Cedars Sinai tomorrow morning.  My doctor thought I would have the most wait time of anyone in the western US.  Ultimately nobody knows when an organ will come available but it could be very quickly (days-weeks).

More to follow.  I want to try and update every day while I am here.