91 Days

Here I am two weeks later.  Tic toc, tic toc.  When I last posted I was anticipating starting chemo therapy to lower my antibodies.   Doing so would allow me to accept a greater percentage of donor hearts.  I currently cannot because of the presence of antibodies.   The way the process would work is that I would have plasmapheresis to clean my blood.  Suck it out of one arm, run it through the dishwasher and pump it back in the other.  This would have taken all the antibodies out of my blood, leaving me immunosuppressed.   Then the chemo would be given to bond to the hemoglobin preventing the antibodies from reforming.  However, as this process is fluid, ever changing, my doctors are constantly updating the approach to ensure I have the best outcome.  So right now we are not doing chemo, we are going to stay the course and wait. 

What that means today is that because I have a driveline infection, immunosuppressing me could cause the infection to attack my body with no defenses, which could cause a lethal outcome.  The good news to this is that while I wait more now, my doctors have done very aggressive research to see exactly what bugs are toxic to me and will ensure I don't get a donor heart that is toxic to me.  This is a good thing.  So here I remain on Cipro, as a status 1A transplant patient, the most urgent category.  The average wait is 90-100 days and as I have been 1A for 91 days now, I am hopeful the call is imminent.

The hard part in this process is the waiting, and the changing of the plans.  Each of the decisions I have been asked to make (stop working out, admit yourself to the hospital to wait long term, do chemo, have a heart transplant etc.) is a major major decision.  I have had to make all of those decisions in the last 2 months.  The good news is that I have complete faith in my doctors that they are doing absolutely everything they can to ensure I have the best possible outcome, and live 40 years:-)  That makes all of this tolerable to some extent.  However, I do feel like I have been treading water for 3 months now.

After I had my last clinic appointment I was driving back to work and as I crossed the 35W bridge that collapsed 6 years ago I saw a bald eagle flying right over the front of my car.  I feel like that eagle is a sign to me that freedom is on the other side of this surgery.  I look for that eagle every day.......

77 Days and counting

The wait definitely takes on its own life.  Sort of like I virus that grows out of control.  My math says that I have between 77-80days of 1A time now.  I had 30 days of 1A last summer from July 1-Aug 1, and have been on 1A since September 27 as a result of my driveline infection and antibiotics.  I also think I had 3 days of 1A when I was first hospitalized.  Right now my restrictions are no running, swimming, showering, working out, less than 2mg salt per day, no drinking, traveling.  So.....I pretty much can't do anything.  I am hopeful right now that this will change at some point in the very future.  90 days is the magic number, I have been told that is the average wait time on 1A.  I am expecting to be told in clinic on Wednesday that I need to start chemo to lower my antibody profile.  I have high antibodies and consequently I can accept a dramatically smaller population of hearts.  Lowering my antibodies would have the opposite effect in that I could accept a much greater percentage of hearts.  More potential donor hearts means less wait time.  Once chemo starts I have more restrictions, if possible.  The doc's are quick to remind me that while the chemo is relatively light it is not anything that is ever really considered good.  So I am expecting to feel pretty crummy.

I am so thankful for my Thoratec Heartmate II, but I am SO ready done with this device.  I feel like every aspect of my life is on hold.  I need more Caribou coffee and to see my Eagle every day, reminding me that I can fly again after this is done.

No, I don't do heroin

I just returned home from a 4 day, 3 night stay in the hospital to have my driveline infection surgically removed.  I was admitted on Tuesday at 8 AM and waited for 8 hours in in pre-op cooking under a surgical gown with a hair dryer hooked up to, frying me.  Finally at 4 PM my surgeon, Dr. Sun came in to rescue me.  After 40 minutes of dreaming  I was in recovery.  I have been visited by the vampire 19 times this week, my arms are riddled with holes and bruises.  IV drugs are definitely not my poison.  Literally every 3-4 hours for 4 days, day and night.

The doctors have said that the average wait time on 1A for a heart transplant candidate, blood type O, is about 90-100 days.  I have 70 days as of today.  So I was told to be prepared for the call inside the next month.  I met with three other patients waiting for hearts while I was there.  People would cringe if they heard the jokes being made behind closed doors about Halloween accidents etc.  I guess it is part of the process.  I feel very strongly that things are aligning, like the eye of a storm, rotating around my universe getting me ready.

I survived on Caribou coffee, Metallica music, and the site of a bald eagle that I saw every day from the view in my room.  It makes me smile and think about the freedom of being on the other side of this and gives me strength to spread my wings and soar higher.

Great LVAD article in Wall Street Journal

Now that Mechanical Circulatory Support (MCS) is becoming a better known therapy option, articles like this one do a great job of telling the story.  I wish I could say I would be explanted, but the truth is the quality of life I have with my LVAD (nicknamed Denny), is worth it knowing I will get a new heart sometime, hopefully soon.

Met another heart failure patient today, someone who is going directly to transplant.  He and I might be buddies before too long.  And, he knows how to play poker (hopefully spades too).

Check this link out:

http://online.wsj.com/LVAD article/

Is congratulations the right word?

I haven't posted in awhile; life has a way of moving on.  This past week I went to clinic for my 2.5 year follow up and did the normal stuff (labs, echo, pacemaker clinic, visit the docs).  I have been trying some new driveline bandages and have developed a skin infection on my driveline site.  I am now on antibiotics and have been put back on 1A, the top of the list.  If I am not transplanted during the time I am on antibiotics, I will have chemo to lower the level of my antibodies.  Then I will be hospitalized to wait for a new heart.

I shared this with my coworkers and peeps the past few days.  People say "congratulations" when they hear that I am 1A, and then we look at each other wondering if they said something wrong, what should I say back, etc.  There is no inappropriate response, but I am not sure there is an appropriate one.  I guess this is another one of the things in this journey that there isn't a book you can read to figure out how to answer the question.

I am both excited at the prospect of getting a heart, since being 1A is what I need, but it does make me spend more time wondering if today is the day.  The phone hasn't rang since I went to 1A on Thursday, but I have had dreams each night about it.

I am definitely ready to be done with the LVAD.  I love my Heartmate II, I have done so well with it that I sometimes forget that I have this device.  But I am quickly reminded as I tie my shoes and the batteries smash into my head, or I get out the car and the batteries are wrapped up in the seatbelt, that things aren't normal.  I am ready to be waterproof, to swim and run again, to be able to play my guitar and not hear the hum of the pump.

Several of my LVAD friends have taken the next step and received the gift of life in a new heart.  I can't wait to join the ranks............

Engineering hearts

Regenerative medicine is getting some amazing press this week:

http://mashable.com/2013/07/10/tissue-engineering-for-heart-transplant/?utm_campaign=Feed%3A+Mashable+%28Mashable%29&utm_cid=Mash-Product-RSS-Pheedo-All-Partial&utm_medium=feed&utm_source=feedburner&partner=skygrid

2 Year Anniversary April 4th

Hard to believe it has been two years since I had my LVAD surgery.  Things sure have changed in two years.  Two years plus 1 month ago I was literally nauseated at the thought of going to the hospital for any reason and now I am perfectly at ease when I go there.  I viewed doctors then as arrogant and disinterested in my health, waiting for something to happen to me so I can be analyzed.  Now I am surrounded by a "care family" that is cheering for me and helping live as long a live as possible.  I saw my picture last night on an LVAD website and my first reaction was wow, my activism is getting noticed.  My second thought was, "oh crap, it's on the Heartware site (the competition:-))".  My cycle class, the one that I teach every Saturday morning at the Andover YMCA, gave me balloons and a big card signed by everyone last Saturday as it was  my 2 year anniversary of arriving at the hospital.  I was surprised and humbled by their comments while bursting with pride that I inspire them.

Two years also means two years of waiting.  Time marches on with no indication of moving higher up the list.   Waiting, waiting, waiting, like Poe's "Tell Tale Heart."  I am looking forward to the weather turning if it ever does here in MN.  I am anxious to get outside and golf.

Telling the story

The attached is a video of a speaking opportunity I had in February in Nashville, TN at the Annual Meeting for Specialty Care.  Specialty Care provides hospital services such as heart-lung bypass equipment, ECMO, ER services etc.  They invited me down to tell my story and connect with their team.  I got to follow their CEO on stage and make some remarks.  They were kind enough to video tape it and provide it to me, so here it is:

It's on the internet, so it must be true

I was asked a few months ago to tell my story on camera for the transplant center where I am under care.  they published a video last week on youtube of it.  Here it is.  Let's get to 1M hits:-)  Bring on Psy.

http://www.youtube.com/watch?v=9P6BYSpE4_Q

17 years too late

When I played baseball at West Point Derek Jeter was still in Double A but we all knew he was going to be in the major leagues.  In 1994 he ate breakfast in the same room as us at the Holiday Inn Express in Tampa, Florida and Jorge Posada gave me a bat.

Army to host NY Yankees in Exhibition

Insanity Month 2 and other updates

Happy New Year.  It has been sometime since I wrote here and I have a number of thoughts running through my mind.  Should you be bored or having trouble sleeping then by all means keep reading.  In no particular order:

• We started month 2, or week 6 of Insanity on Monday.  The first four weeks were hard enough though admittedly they got easier as time went on.  This was followed by a recovery week that still had me choking on my sweat, but much easier.  Typical work out in month one is about 35 minutes door to door.  Month 2 started with a 25 minute fitness test, to compare performance to your day 1 baseline fit test, and a 58 minute work out.  From my view here in the front row I can safely say month  1 was child's play.  But, it is working, I do have to admit  and while I hate getting up at 5 AM I do find my days are more fulfilling starting out with a great work out.
• I changed jobs on January 14th.  While otherwise no big deal, changing jobs while active on the transplant list and wearing a medical device that is scary is no easy proposition.  It seemed ludicrous to consider doing it, but like everything we did this past year, I found it to be very liberating to not let heart disease define me.  I cannot attenuate other people's fear for me, and have to make decisions based on what is best for us.  There truly is no book you can read about if, when, and how to tell your new employer, "Oh by the way I have end stage heart failure and need a transplant."  In the end I chose to view it as my problem, not theirs, employee provided insurance does come with risk for the employer too (after all I am just 1 employee amongst 91,000), and this is really nothing different than pregnancy.  While you are laughing let me explain.  I will get the call, hopefully, and go have my surgery.  Barring the unforeseen complications and dreaded disaster, I will be able to return to work in 8 weeks.  Should you be wondering I did cop to it prior to getting an offer and was commended for the courage to be so transparent.
• Heart month is a few weeks away.  I have been nauseated at the thought of pursuing any opportunity that would draw attention to me from this disease.  However I do feel that my story and the great care and research done at the Minneapolis Heart Institute are noteworthy on a grand scale.  One small fact that attests to this is the fact that Minnesota is the only state in the US that does not list heart disease as its leading cause of death.  I petitioned our local NBC affiliate with some facts and a potential story for heart month (Disabled Veteran, tragically diagnosed with heart disease, cheats death, becomes national fitness instructor while actively waiting for transplant blah blah blah) but was told not interesting and not national news.  disappointing, but I guess how do I compete with The Voice or American Idol, two truly great, nobal causes for mankind.  I also pointed out that heart disease kills 10x more women than breast cancer and more women than all forms of cancer combined but gets almost no press.  I  challenge you during February to count how many heart disease stories, and in particular those for people under age 55, you see.  When I saw pink bats, and pink cleats, and pink penalty flags it really gets me fired up.  Nobody loves a healthy set of breasts more than me, but is it more newsworthy than heart disease?  Are you doing all you can to make it better for those behind us, those not yet afflicted?  Maybe it is because people see heart disease as an express ticket to a ugly death, versus cancer (cut it out, lose your hair, get on with your life) which can be beat.  I have not had cancer, though I know the deck is stacked against me in the future.  It is cruel and I don't know what it is like to suffer with it.  But I do know what it is like to feel like you are drowning for 7 straight days and I can tell you, it sucked!
• Loved the story about the woman who held her dead heart after being transplanted.  I want to see mine after surgery.  I am sure it sounds morbid, but to truly stare the tiger in the eye and know that I won.....I just cannot explain it.   It would be like Superman looking at kryptonite.  In case you missed it....Woman holds her old heart after transplant

I guess I will wrap up now.  The "wait" truly does take on a life of its own.  I don't spend time thinking about it, but that doesn't mean ever or never.  As Jon Bon Jovi famously said, "Sometimes when you're alone, all you do is think."