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: