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.

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.