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!!!

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.

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.

Now batting cleanup...............

It has been 31 days since I was admitted to the hospital.  I spent the first two nights and three days in the Cardiac ICU being monitored.  This meant the doctors were looking at my pump controller every couple of hours to see if there were any more speed drops.  At this point there have been no recurrences.  The care team here made a decision that all things being equal it is in my best interest to remain hospitalized where I can be observed.  If a recurrence occurred or a complete pump failure occurred the doctors could respond immediately.  Better to happen here than in my car or on a golf course someplace. 

Now that time has passed and I have not received a heart the prevailing thought is I need a heart now.  To do this the team has decided to transfer me to Cedars Sinai in Los Angeles.  This will likely take place in the next couple of weeks.  The benefit of this is that 1) CS is the worlds largest transplant center by volume, doing 120 transplants last year compared to 14 at Abbot (1 every 3 days vs. 1 every month), and 2) CS is the world's leading Transplant Center for highly sensitized patients (high antibodies) which I have.  The hope is that by sending me to LA I will get a heart quickly and get the best care in the world.  I will come home once CS releases me and I pass my initial biopsies.  Let's get a heart first:-)

There are some Veteran's benefits available for me, but there are also some financial challenges.  I require caregiver support initially after transplant meaning those who come will need some place to stay.  I learned today that this would include realistically $3000 per month for a short term housing rental, plus rental car, plus food and miscellaneous.  There are some resources to assist me in finding a place to stay and I hope to get those in the next day or so.

If there is any good news in this it is that I am no longer treading water.  We are dropping the petal not just to the floor, but through it.  I will try to keep posting as things evolve, but I secretly hope the next post is after transplant:-)  I have been enjoying the occasional cappuccino and have seen eagles from my room as I look out and they continue to give me hope.

Everything in moderation

Things took a turn this week.  I had a right heart catheterization on Tuesday.  Everything looked good, except for being a bit dehydrated.  However the doctors discovered some speed drops on my pump and took a chest x-ray.  The x-ray showed a suspicious spot on my drive-line and had additional x-rays taken.  The conclusion is that I have a fractured drive-line.  The protective covering on the drive-line an the interior parts have pulled back from the pump in my chest leaving the wires exposed and causing my pump to occasionally slow down.  The risk of this is that the pump could stop completely and kill me.  My doctor called me on Thursday night and told me to pack my crap and get to the hospital in the morning, we are done screwing around with you.  I was admitted to the hospital on Friday morning and advised that I won't be leaving until I get a new heart.

Since yesterday morning I have had the usual battery of tests and visits from the team.  I am in the ICU where I am 1) the youngest patient by 25 years and 2) the only one walking.  There is a lot going through my mind at this point.  Knowing that I cant even leave my room lest I collapse, as my doctors fear.  This has been shocking for family and friends to deal with.  I think the same for the clinical team as well.  Nobody is quite sure where the fracture came from, though the likely culprit is three plus years of very high activity.  I have heard that this problem has been fixed in newer pumps, but it doesn't really help me.  The options I am facing are 1) replace my pump immediately and recuperate and wait at home, 2) be transplanted ASAP (dependent on organ availability), or 3) remain hospitalized and wait for a heart.

The team at the hospital has been awesome and left me alone for the most part.  I had a PICC line put in yesterday, and while uncomfortable it makes things much easier for drawing blood and administering meds if needed.

Should anyone be considering a LVAD I hope that my story does not discourage you from getting this device. I highly highly recommend this therapy; this is merely a speed bump on the way to my new life.

206 days and counting.....

78 days have elapsed since my last post.  My total days as a 1A is approximately 206.  How long is that?  Long enough that some people who started this journey well after me have been transplanted before me.  Worrying about when it is going to happen is totally not productive but at some point it doesn't seem or feel real.  I had a clinic appointment a few weeks ago and things are just fine.  My father is home from the hospital and well into cardiac rehab.  It is exciting to see how much he has recovered since I saw him.  He sounds stronger than he has in nearly 9 months and is back to his normal self.  I am anxious to get back to my life....running, swimming, and do the things that I enjoy.  It is hard as time goes on the maintain the edge, the feeling that you are as ready as possible.  I feel like I have trained for a race and I don't know when the race day actually is.  Hopefully my next post will be on the other side of things....I will be recovering and ready to start my life.  I continue to see eagles and they give me hope for the next phase...........

Sometimes the truth is stranger than fiction...............

128 days and counting.  I am beginning to feel like the call is a message in a bottle floating in the pacific ocean..........will it ever come to shore?  My entire life at this point is wrapped around waiting to get a new heart.  No complaints, I feel awesome, however I do want to get on with my life, the one that doesn't involve Velcro, batteries, harnesses, and a binder around my middle.  I have seen eagles repeatedly around the Minneapolis area so I am hopeful of the great things to come:-)

Since I last wrote life has been turned upside down.  My father went into the hospital at Columbia Presbyterian in NYC on December 12th.  He was diagnosed with Heart Failure and on December 20th had open heart surgery.  He now has a LVAD, a Heartmate II of his own, just like me.  I am absolutely dumbstruck that my own father has the exact same device.  I am quite sure that we are in rarified air...........seriously, how many father son LVAD patients can there be?  I flew out to see my dad on 12/21 and was there until 12/24.  Very Deja vu to see a repeat of what I went through two years ago.  In addition he had 3 valves repaired, the first time his surgeon ever had to do such a comprehensive repair. He was very very sick. 

Dad is now 1A on the transplant list and likely will not go home until he is transplanted.  His recovery has had some bumps as he recovers from the surgery, including some heart rhythm issues that required an ablation.    He has always been a huge source of strength and inspiration for all of us and we expect nothing less from him now.

Very interesting to see other VAD patients and clinicians from another center.  Some were quite shocked to see someone healthy.  Hard to believe I am the only healthy LVAD patient, others I am sure are doing as well as or better than I.

My mom now has her husband and her son both at the top of the transplant list in two different locations.  I cannot imagine how she keeps it all together, but she does somehow.  It was great to see her and my sisters when I went home, but wish it was under dramatically different circumstances.

To pass the time in the hospital and bring some levity the attached picture shows how we amused ourselves.  Think of this as the mood barometer, sort of a enter at your own risk.