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Sunday, March 23, 2014

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...........

Friday, January 3, 2014

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.

Wednesday, November 27, 2013

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.......

Monday, November 11, 2013

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.

Friday, November 1, 2013

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.

Monday, September 30, 2013

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: article/

Saturday, September 28, 2013

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............