This is Insanity

So we took the plunge and started the Insanity workouts yesterday.  So much for thinking I was in shape, lol.  After the 25 minute fit test which left me on my hands and knees in a pool of my own sweat on our cold basement floor I realized this is INSANE!  Today was day 2 and it was 40 minutes.  I ache all over and am exhausted.  But we are not quitting.  So we will see what happens in 60 days:-)  I will say that for me the best part of this is having my LVAD holster slinging over me like a cargo net or when I am sweating into my eyes I feel like a giant octopus is wrestling with me.  But then I finish and ask myself how many other heart failure patients awaiting heart transplant are doing INSANITY:-)  As my NCOs used to say in the Army, pain is weakness leaving the body.  I must be pretty weak then:-)

Read all about it: Organ Donation

This is a great call to action.  Please pass this article on to anyone and everyone you know.

a-tale-of-two-transplants


Halloween pictures

Welcome to the Board

After the Minneapolis Heart Institute Gala I had the opportunity to have lunch with the President and CEO of the Heart Institute Foundation.  During that meeting I was asked if I would accept, if nominated, an offer to be on Board of Directors.  Long story short I was and I did.   I am not 100% sure all what this means but I think we help provide input and guidance as to the direction the institute moves from a research perspective, marketing, branding, community interaction etc.  Very exciting to me.

RRRAAAAA-OOOOOLLLLLLLLL, Let's go Yankee's

18 months post implant - clinic up date......Where has the time gone.  I had clinic yesterday and I didn't even realize that it had been 18 months since my Heartmate II LVAD was implanted.  It seems like it was yesterday and yet so long ago.  There are times where I am startled by reminders of my stay in the hospital.  Grey's Anatomy just started a new season and something new is the personal phones all the characters have.  They make a chirp instead of a ring.  I know this because all the clinicians at Abbot have the exact same thing.  I felt like Pavlov's dog hearing the chirp and looking for a nurse.

Clinic was unremarkable and eye opening at the same time.  I feel great and my blood work was all very good.  However my echo came back with an EF of 15.  I have to admit that this is surprising given that my workouts have continued to improve steadily.  My chamber volume is back to 5.9, down from the 8.5 cm when I was first sick.  The doctor astutely pointed out that the echo serves as a reminder that while I am doing very well on the surface, but behind the scenes my heart is "profoundly" compromised and will never get better.  He said it is a good reminder for everyone how fortunate I have been.  I left clinic reflecting on our conversation and how truly lucky I am to have tolerated this therapy so well.  It was pointed out that every day I am not transplanted is a day closer to a cure, a day without immunosupression drugs, and another day that the clock doesn't start ticking down.  I have so much to be thankful for and it surprises me how at ease I really am with where things are at in my life right now.

I ran at the gym tonight.  I just needed a break from the elliptical.  Someone can only do the same exercise for so many straight workouts.  I have been on the elliptical since June of 2011, I needed a change:-)

How about them Yankee's

Talk about eye opening

The world renowned Dr. Benjamin Sun, my surgeon

Dr. Dave Feldman, Director of Heart Failure and Transplantation and the overseer of my care

Me and the boss.

Lisa Carter, one of my LVAD coordinators and a nurse extraordinaire at Abbot Northwestern.

We went to the Minneapolis Heart Institute Gala this past weekend.  This celebration honored the 30 years that MHI has been in existence and all the great work that they do.  It was awe inspiring to be in the room with so many world class and world renowned cardiologists and surgeons.  I was very impressed to learn that MHI is the world's leader in cardiac stem cell research.  It was a great opportunity to speak with some of the greatest minds, clinicians, and surgeons in the cardiac care profession alive today.  The evening was capped off by remarks from former US Senate Majority Leader Bill Frist, MD.  Here are a couple of pictures from the event

Many new interesting articles

I wonder what I would think about all of this research if I hadn't run from this disease for the past ten years.  Two interesting articles popped up in my google machine last night that I had to share.  The first one has to do with earlier detection and hopefully reversal or elimination of heart failure.  Thanks to our friends at Johns Hopkins:

Johns Hopkins Protein article

The second article has to do with an advanced treatment protocol.  It is interesting to me because in transplant the Vagus nerve is cut which disrupts the regulation of resting heart rate and the sympathetic nervous response, fight or flight.  In short my heart won't know to speed up or slow down because it is "denervated" or the nerve has been cut:-)  Very cool how tapping into this nerve function offers promise to those not facing transplant like me.  Check it out:

Vagus Nerve therapy Article - Allegheny PA

A new Olympic Event - Transplant Coordination

This is a very interesting article found in the NY Times.  It talks about the delicate and precise coordination necessary for a successful transplant.  While the article is about pediatric transplant the same applies, I think, to transplants of all ages.  Here is the link:

"giving-a-child-a-new-heart"

Last week the season finale NY Med the focus was on a cardio thoracic surgeon at Columbia Presbyterian in NY.  The last vignette was a transplant of a 60 something male who had a Heartmate 2 LVAD.  Very interesting to watch.  For me it was curious to see the old heart come out, looking like a deflated Walmart bouncy ball, the kind that we all love to bat out of the cage in the kids toy section, and the new heart looking like it was cut out of a thoroughbred.

Just finished the Minneapolis Duathlon

They claim it is the world's largest duathlon.  I finished in 2:09, which was 110/123 in my age division, and 540/630 for the men.  My goal was 2 hours.  My first run was 34:02, the 18 mile bike was 54:18, and the last run was 36:54.  I hit a wall at the 2 mile mark of the second 5k and while I HATE to admit it, I had to walk.  I had nothing left in the tank.  There was one major accident on the bike course, and it did look very bad, at least 10 bikes were piled up and a cyclist was down and not moving.  I am pretty sure I was the only competitor with heart failure and a LVAD so all things considered I think I kicked butt.  On to recovering...............

Interesting Debate

For anyone who has been touched by Autism this article really touches a nerve.  Doing my best to avoid all religious and political implications....but if we would give a heart transplant to a prisoner with a life sentence or on death row as we have seen in recent years, why would we EVER deny an autistic person the right to live.  What choice did they have in the hand that they are dealt?

paul-corby-autism-denied-heart-transplant

No Soup for You 1 Year

I officially came off of 1A yesterday at 12AM.  My 30 days has passed without having received the gift of a new heart.  I think I am ok with that.  While I am definitely ready for the next step I am aware that I am doing well with my LVAD and continue to push myself to take on new challenges.  So if I have to wait another year or so until I get the call so be it.  I can't say I am not happy that I get to avoid anti rejection therapy for a bit longer:-)  That is the silver lining.  And there is always the possibility of a miracle happening before I get the call:-)  I am pushing myself to compete in and complete the Minneapolis Duathlon at the end of the month.  This is a 5K run followed by a 15 mile bike ride followed by another 5K run.  I can do each of those by themselves....the challenge is doing all of them one after the other.  I have a completion time in mind but I wont say anything till after the race.

Update 27 days in

Tick tock, tick tock, tick tock.  Time marches on.  No call has come in the first 27 or so days on 1A.  Funny thing is that during my time on 1A I have received a call from a LVAD friend that got her own call while on 1B, and another was just put on 1A like me.  In the end it was a dry run as we in the field like to say, lol.  I continue to be in awe of the amazing attitudes of the people who are fighting this each and every day.  Here we are, each one of us, anxiously for the call to come for a HEART TRANSPLANT and what I feel inside is that it is about to be the kick-off at the Superbowl.  Bring it on!  I think I am going off 1A for about 5 days due to some activities at the hospital and then back on for the last 5 or so.  Since my last post we have finished unpacking from moving ourselves across town.  So much for hurry up and wait.................

Quick Update

Wanted to check in with everyone out there who is following me on this journey.  I am 20 days into my 30 days of 1A time and no calls as of yet.  We are hopeful that something happens between now and the 25th.  Attitude is good, physically feel good, and all around all systems are a go.  Even managed to move across town during this.  Fingers crossed and waiting for the call.

Interesting Debate......My vote....don't change the rule

Very interesting debate going on about LVAD patients and our right to 30 days of 1A time without hospitalization.  The arguments that Dr. Pinney points out are absolutely true....knowing that I had 30 days to use at some point in the future strongly influenced my decision.  What do you think?

Should LVAD patients get 30 days of 1A time?

It's Go Time

So as of 3:25 PM CST today I am 1A on the transplant list.  The call could come at any time.  I was numb on the car ride home........excited, nervous, motivated.  Complicated while at the same time so simple.  I asked a few questions of the transplant coordinator to validate what I have learned in the past year and no real surprises.  The new restriction I have heard is no cultured foods after transplant so no yogurt, no Blue (not a problem here) cheese, no feta (big bummer) ever.  I guess it is a small price to pay.  So for the next 30 days we are waiting for the phone to rind...............

Calculus is not taught in 1st Grade

So after my last post I figured I needed to get engaged and meet with my doctors to make sure I had fully considered the risk of waiting a year.  After lengthy discussion and reflection we have decided that that is not in my best interest.  As my doctor explained it comes down to perception and how numbers can manipulate or distort reality.  It seems simple to say 15 years after transplant and 1 or 2 years on the device maximizes that time (15+1, or 2....).  The reality is that I probably have some level of risk of an adverse event occurring, significantly higher than any healthy person,, that I have grown to tolerate on a daily basis. Similar to a soldier making a foot patrol in hostile territory.  You just get used to it and after awhile ignore it.  If that risk is say 5% and I were playing the lottery I might take those odds if I thought I could win.  If on the other hands that represented risk that something devastating would happen to my family on the next car ride I would never take those odds.  So, how can I take them with my life? So after much reflection I have decided to take my 1A time starting on June 18th.  I have 30 days of it coming to me for free (meaning no time in the hospital).  Hopefully I am blessed with a heart in this time.  I think about everything I can do now and it is bittersweet because I can't swim with my kids or run or road bike.  I don't feel bad about that at all (well I do miss swimming with the kids a lot!), but I think by not challenging myself to move forward and get my life back unencumbered by cables, batteries, and shower bags, I am actually doing the 1 thing I swore I would never do, define my life by heart disease.

We were running a straw poll around the house on what date I would get a new heart.  Unique things that you don't think about unless you are going through this, but hearties celebrate a 2nd birthday....the day the receive their new heart.  How cool would it have been to get a new heart on my birthday in June?  The kids chose that date of course.  Unfortunately that won't be the case......maybe 4th of July?

The real countdown.....18 and a butt days..............

1st grade math

Today in my email was a link to a story about a gentlemen from my hometown who has twice been transplanted.  I met him last Christmas and we talked on the phone several times.  It reminded me that Thursday was the day we planned to start my 30 days of 1A time.  As things sit right now, we are not going to take the 1A time.  Last Monday I had pulmonary flow tests (PFTs), a right heart catheterization, and the vampire came to see me.  My tests all look very good and in light of how well I have done this past year my doctors think I am a good candidate to wait another year before starting the transplant process.  For every  year this LVAD lasts me it adds another year to my life (as a reminder the mean survival for heart transplant is roughly 15 years) and delays the immunosuppressive therapy that I want to avoid.  That is the crap that will kill me in the long run.  Awesome that I have earned the right and the faith of my doctors to participate in making this decision. As I have learned, this process is like choosing something to watch on cable.....the fewer choices you have the easier it is to chose.  In this case the more options you have the harder it is to make a choice.  There is NO book out there to make this decision and anything that I factor into the process ultimately feels hedonistic compared to my health.  Do I want to move or do I need to move?  Do I want to accept the promotion for work or do I need to take it?  The only way to take the wants out of the equation, or so it seems to me, is to put my family first.  Doing so tells me that choosing to stay on the LVAD another year, rather than "electing" to be transplanted, is the best decision based on something that really matters, my family.  The wait takes on a life of its own and it is hard on everyone around me, even when we don't talk about it.

I have had many people reach out to me the past few days for an update on what we are going to do.  People I haven't heard from in a long time, people I didn't even know knew.  I can't tell you have much that means to me that people care.  All I can say is thank you for the thoughts and prayers.  And thank you for reaching out!  It has been great to reconnect.

On a much more fun note, we went to see Van Halen on Saturday night, sat front row, center stage.  Amazing. See a couple of pictures, one of which shows me and the LVAD.  To quote the security person when we entered the arena, "What the hell is that, and can I touch it without killing you?"  Lol, suffice it to say security was easy.

The Final Countdown

It has been awhile now since my last post.  Time has been marching on.  I was in clinic yesterday for Pulmonary Flow Tests and a right heart cauterization.  Not too bad, but a very long day.  My case is going before the transplant committee tomorrow for the final determination on if I go to be elevated to 1A next Thursday.  In talking with one of my doctors yesterday at the hospital I think they may leave it up to me at this point.  The trade-off to be made is balancing my current health (which is good other than the heart failure and LVAD) against the risk that the pump could fail at some point in the future.  How do you decide when to have a transplant when you are otherwise healthy?  Please tell me:-)

I was at Baylor Heart Hospital in Plano, TX last week and had a really amazing experience.  I was taking questions from nurses about living with a LVAD and discussing in general the patient perspective.  One nurse approached me and after a short discussion shared that her son had donated his heart 20 years ago.  We had a moment and talked about the courage it took to make the decision to donate, and how happy she is that he made that choice.  She has built a relationship with the woman who received the gift and she talked about what a wonderful lady she is.  It was an amazing moment to be there and share it with her.  I hope that I have that type of experience with my donor family.........So, more to follow after the transplant committee meets tomorrow.  8 and a butt days...............

Great Story

Just watched the first two segments of this video.  Pretty awesome.

Montclaire State University Student Heart Transplant

Friday the 13th........

Spent some time today at the hospital volunteering and supporting the doctors. Discussed my wait on the list and where I am at. What happens if I don't get a heart during my 30days on 1A? I was told it could be another year and a half before I get a heart. Wow, the wait at this point is starting to take on a life of its own. Hard to be mentally sharp and read for the effort it takes to be focused and ready for all the heart work. 42 and a butt days...

Telling the story

I am in Dallas all week for work. Great to see everyone again including my friends who are around the world but came into town. Lots of questions about this stuff hanging off of me which leads to shock and apologies etc. just ready for the next step, feeling hard to concentrate on things at times. I have been thinking about being back in the hospital and starting from scratch. Also have been wondering where I am on the list as a 1B since my transplant center won't tell me. 44 and a butt days.......

April is "Donate Life Month"

How exciting.  Too bad it doesn't make a good Hallmark Holiday so nobody advertises it and it doesn't appear in any media.  Beautiful morning here and the kids were excited that the Easter Bunny came.  Looking forward to brunch and the Masters.  Last year I watched it while in the hospital.  I have started to think about 1A time, now that there are 47 days left till I move up to the top of the list.  I find myself drifting into thought...questioning am I afraid or am I excited.  I lost some weight this week which made me feel good.  Just a couple of pounds but it puts me smack dab on the goal weight I want to maintain.  I have been questioning if electing for transplantation is the right step.  I had a great and very exciting conversation with my good friend Chris about cycling, which I can't really do right now due to the blood thinners I am on as part of the LVAD therapy.  Between blood thinners and wearing cycling shoes that clip in to the pedals.....that makes for a bad day if I fell while on the bike.  To say nothing about the driveline and other attachments hanging out and off of me right now.  Thinking about what I could do after transplant that I cannot due right now definitely makes me lean strongly towards a transplant.

I am trying to figure out how to make comments that people leave me visible to everyone.  If you know how to do that on the blogspot.com tool please let me know.  Happy Easter to everyone.  47 and a butt days............

Finally Got out to Golf

Spent a wonderful day on the golf course today.  First time this year.  Wasn't bad actually, great weather and the golf was good.  Trying to golf with the LVAD is certainly interesting.  Thought of the day today was can't wait to golf without the LVAD.  49 and a butt days.........

1 Year with a LVAD

April 4th, a date that will always stick with me.  How could it not.  I had my LVAD impanted a year ago today.  As I was walking the halls at work today I found myself wondering when I will see most of the team again.  I was asked about 5 times today what the contraption is that I am wearing.  Lots of well wishes and disbelief from those that don't know the story.  51 and a butt............

Long Days

Hard to keep up with writing on a daily basis.  Yet another reason I am NOT on Facebook, lol.  I traveled again yesterday to Dallas for work.  It isn't so bad when I get upgraded.  However, what does get old and serves as a constant reminder of the fact that our society is not educated on heart disease, is the constant shock of either TSA agents or airline personnel telling me I am too young to have heart disease etc etc.  So much opportunity to educate.  The days are long hauling an over-size carry on bag with all the LVAD gear, plus an extra checked bag for the shower bag and work out gear I always bring.  I still find myself double and triple checking myself and my gear to make sure I have everything.  Last night my surgeon shared some newly available information regarding LVAD patients and mean time to recovery being longer than previously thought.  That is a lot to process less than 2 months to transplant or 1A time.  Lots of thought about immunosupression and side effects of drugs.  52 and a butt days.............

No April Fools here

Can't believe it is Sunday night at 9:00 PM.  Very long but very exciting weekend spent training and ultimately earning my certification to be a Group X instructor at the YMCA.  In short if I earn any training certifications I could teach Turbo or Group cycle, or spinning as it is called.  I found myself feeling very thankful the entire day and reflecting a lot on where I was a year ago today.  I was asked to share my story with the training class this morning which I did.  I felt like I was reliving the experience all over again but I got through it and got a standing ovation at the end.  When I came home I cooked dinner and celebrated John's 9th birthday.  He was so happy to show me all of his gifts and play April Fools jokes.  He laughed so hard at candles that re-lit once he blew them out I thought he was going to wet his pants.  Tomorrow it is off to Dallas.  I am dreading travelling, not because I don't like it but it is SO much work hauling the LVAD around and I am constantly afraid I am going to retain fluid.  I am ready to be done with the LVAD.  More tomorrow............

Today for Yesterday

I ran out of time yesterday.  I had intended to post every day during the last 60 days.  After working all day I went to Group X Fitness instructor training at the YMCA.  I broke a big pile of Don't Do Rules as an LVAD patient.  I did kick-boxing, Turbo-Kick, and kick-boxing MMA class.  This guy won't be on "So you think you can dance" any time soon.  Lol.  But I did it and it was awesome.  Back to 8 hours of class today.

Where were you 1 year ago right his second

I can answer that question quite easily.  I was in a hospital bed dying.  I will never forget it, it seems like last night and yet it seems forever ago.  I remember so much and yet I have forgotten it seems anymore.  I will never forget arriving at Abbot and the shear chaos of Dr.'s, nurses, and technicians working on me.  I wont forget Dr. R. asking me where my family was because I might not make it through the night.  I won't forget Dr. Sun sitting at the end of my bed rubbing my feet and keeping me calm and explaining to me the options I had to save my life, LVAD or transplant.  I won't forget my parents arriving or Heidi arriving.  For those of you keeping score at home, it was the 31st of March.  My son's, John, birthday is April 1st and I was afraid I wouldn't live to see it.

We have set a date to take my 1A time.  May 24th.  Coincidentally it is about 2 months from today.  I think I am going to try and post everyday what I am thinking.

Since Saturday night organ transplantation has been a very popular topic in light of Dick Cheney receiving his heart.  Since he and I had the exact same LVAD model, I think about his experience.  The Cheney effect as I call has helped me explain to others what an LVAD is.  When people ask me to explain I say, "oh it's the exact same device Dick Cheney has" they suddenly know exactly what I am talking about.  Magic:-)

I find myself feeling three things a lot.  The first is the complete fear of anti-rejection med complications.  I have been lucky so far in that I have tolerated all medications without side effect, at least that I am aware of.  I pray that continues.  I think about it a lot.

The second thing I feel is wow, I have a lot of energy.  I have been working on my honey-do list, most of it is self imposed.  I squeeze working out, work, golf lessons, yard and house work in around everything else.  Amazingly I have fun doing it.  I just took my first certification test to become a National Fitness Instructor at the YMCA and I passed.  Yeah for me:-)

Lastly I am dreading the two weeks after surgery.  No getting around it but just being back in the hospital, split open and needles and IVs sticking out my arms, neck, chest etc.  Small price for what I get out of it but I have to tell you it is hard.  Just need to suck it up.

I guess that is all for now.

Thoughts

I have not really posted anything in awhile about what I am thinking.  Lots going on these days.  We have talked at home and settled on May 24th as the day to opt into our 1A time.  1A means I am at the very top of the transplant list and I cant go anywhere or do anything because I could get the call at any moment.  This is significant because this 1A time is my 30 days "free" that I get because I have a LVAD.  I have my next LVAD clinic appointment on April 11th and from there we are about 6 weeks from 1A.  Lately I have had a mix of emotions and thoughts:
1) I am definitely ready for the next step.  It has been nearly a year since my crash and I am in a great place and feel great but I really want to not have something sticking out of me, to be able to shower without a 5 lb. bag hanging around my neck and I am SO SICK of the itching from when I change my dressing.  I find when I take the kids to swimming lessons I just want to shut my eyes and fall into the pool.  I miss swimming with them.
2) I am running out of time to get everything done.  Not that there isn't a future beyond this next step but most people go through life and can't tell you hey on  May or June XX I have a 5% chance of dying.  In my mind I do sometimes have that thought.   Its not about being morbid, I guess it is just that the hurdle I have to jump over on that day is huge and so I can't really allow myself to look beyond.  I think it is important be in the "1 day at a time" mindset until I can drive again and stop having biopsies every week:-)
3) I have a huge list of projects I want to do around the house.  Shelves to be hung, shelves to be built in the basement, a fence to be built outside, another fence to be painted, a foundation to be fixed etc etc.  Each one is a full day project or more.....so if I have 8 weekends left can I get them all done.  GGRRRRR.
4) I want to take my kids, 1 at a time, out of school for a daddy hooky day.  We can go do whatever they want.  There day with me.  Twins game, mall of America, Five Guys...whatever, I don't care.  Just want a day with them
5) Golf.  I have started taking lessons and have set it up with work to take a couple or 4 Friday's off leading up to the 1A date.  I just want to clear my head and be in a good place.  I want to play bogey golf or better again and I hope these lessons get me going.  I have had 2 already and I love what I have learned.
6) Group Fitness Instructor - I am sitting for the training to become a national cycle instructor so I can teach group cycle or spinning at the YMCA.  That is in two weeks.  So I am scrambling to get my CPR/AED training done.  This one seems crazy in light of everything else but to me it makes the most sense.  In my daily workouts I feel like I have leveled off.  Not a good place to be since emotionally I think you need to be challenging yourself.  I have strong desires to run and compete athletically on the other side and by become an instructor I can get in the mindset to start training now.  I can't wait.
7) We have so much left to plan.  Being the nerd that I am I have built a spreadsheet tool for how to have a transplant.  Based on all the books and blogs and articles I have read I have compiled the list of suggestions from people and made this tool.  What to pack, who to call, what to do blah blah blah.  Just like being 40 weeks pregnant.  When the call comes is not the time to crap your pants and say what do we do.  We have a lot left to do.........will signing, power of attorney signed, HC directive signed and delivered to appropriate people, call lists, child care etc.  We just need to review it.
8) Fundraiser.  This is a big one.  I have read repeatedly that people WANT to help but they are afraid to approach and ask how and don't want to be a nuisance.  We know we cannot do this on our own and are partnering with the YMCA to do a fundraiser.  We are just beginning to figure out when and how and what it will entail.  Need to get engaged here.
9) Starting from scratch.  When I reflect on the last year, how much I have gone through, how it has impacted everyone, and gosh here we go again.  Surgery, recovery, coming home, cardiac rehab, sleeping on my back, medications, don't do list etc.  I think at this point the waiting is the worst part.  Which takes me back to where I started this.

I am ready for the next step.  72 and a butt days....................

THE Game Changer

Chimera.  Look it up.  I have seen this therapy reported twice before but today it was on CNN.  Considered the holy-grail for organ transplantation and other advanced medical therapies.  I would sign up for this in a heart beat, pun intended.   This is exciting stuff.

 Life without immunosuppression therapy following solid organ transplant

What's next, bubble gum and duck tape?

Read an amazing article today about the advances in treatments for advanced heart failure.  I don't think this will save me from the transplant buffet, but it may save others in the future.  Check it out:

Injectible Gel

Finally.............feeling better

yes, I finally feel better.  I had been feeling a bit run down since I returned from California early last week.  I didn't have my second wind exercising and I was sleeping like I needed to hibernate.  On Monday afternoon I had a migraine headache for the first time ever in my life.  It was quite frightening when my colleague asked me, "hey are you OK??  you aren't making sense."  I shut it down for the day took a 4 hour nap.  I NEVER take a nap.  A risk with the LVAD is stroke so when you get an acute headache that shows up so fast you mind starts to wander.  It took a couple of days after that but I finally have a good appetite back and my energy.  I have worked out five days in a row for the first time since my surgery last year which is great.  So yeah, finally.

I became friends with another patient last year when I was hospitalized named Dave.  He has his LVAD placed about two weeks after mine.  He just got his new heart last Saturday the 18th.  I saw him in the hospital on Monday and spent some time with his family.  He looked great for being only two days since his surgery.  Well I went with the family yesterday to the hospital and spent about 90 minutes with him.  He looked amazing and the change since early in the week was palpable.  He had so much energy and had good color and just looked healthy.  I don't know how to describe it other than to say if you have spent any time in a cardiac ICU the patients don't generally look great.  Dave looked awesome.  I have attached a couple of pictures of he and I.  For me it is so good to see beyond the surgery and see the other side.  A happy and relieved family, his great kids, and somebody who looked like his life was starting again.  It validates for me all the research I have done into what this next step represents and what I can look forward to.  

Here are a couple of pictures

Please consider helping

My employer is pushing us HARD to make donations and volunteer time to worthy causes. To me, and I hope many of you all, nothing is more important that curing heart disease. So my charities/organizations I am supporting are the American Heart Association, UNOS, and Caringbridge. Please check out my page: Pete Q Dell volunteering and donation page

I am asking for you to check the page out and offer any thoughts of advice or encouragement you may have. If you can, a donation would be great as well. It shocks me that so little noise is made for heart awareness in the month of February:-(

OMG, the LVAD shut off

Heidi and I woke up yesterday to a frightening discovery.  The display unit for my LVAD had shut off. My first thought was OMG, my LVAD stopped AND I slept through the alarm.  I immediately did a self-test on my device and looked at the power unit to make sure it was still on.  We unplugged the display chord and plugged it back in and it came back on which was a relief.  It reminds me the first time I had a battery alarm I started shaking and couldn't remember what to do.  It sounds like no big deal as I write this but I can assure you yesterday morning it was no laughing matter.  Have to take my display unit into the hospital this morning for them to swap out.

Organ Donation Article

Read this last night, courtesy of my Google Search.  Pretty interesting.  Article discusses how other countries, in particular Israel, deal with the religious and ethical dilemmas around organ donation.

Who deserves a heart transplant

Two articles in one day:-)

Wow.  Another very exciting article just came in.  Check it out:-)

Wireless LVAD????

Happy National Organ Donor Day

I tricked you all:-)  I just saw on another Hearty Blog that highlighted that not only is today Valentines Day, it is also National Organ Donor Day.  The statistics are staggering:

• 113,000 people waiting for an organ
• Each day an average of 79 people receive the gift of Organ Donation
• 18 people die each day waiting for a donation
• 1 Donor can save up to 8 lives

I received an email from my sister this morning that a co-worker of hers received the call from her father, needing a heart, at 2:40 AM EST that a heart had come available and that he would go into surgery at 8:00 AM EST.  No word yet on his status!

National Organ Donation Link

Thoratec Visit

I am on my plane returning from San Fransisco.  I arrived on Monday night and left today, Friday the 10th.  Spent 3 days in San Jose, one day in Pleasanton and 1 day in Fairfield and my uncle's house.  The highlight of the trip was definitely time with my family.  However I want to share about my time in Pleasanton.  I went to Thoratec's headquarters.  Thoratec makes my Heartmate 2 LVAD.  I had the VIP welcome, lunch with about 20 people and a factory tour.  What an amazing experience.  After the shock of having 20 people watch your every move as you eat, say your hellos, etc. we had lunch and got down to business.  I think there was representation from marketing, sales, advertising, manufacturing, clinical development, R&D and maybe patient outreach.  If I missed someone I am sorry.  I got to share my story and get asked questions about my experience.  Then I was able to walk through the factory and actually touch a real pump, see it assembled and see the amazing production process.  For those that have this device, take my word for it, this production is absolutely state of the art.  I asked a lot of questions from a patient, care-giver, recipient, and a business perspective.  The thing that struck me was the palpable admiration of the employees in seeing a patient, the caring way they asked their questions, asked about my kids and family, how I am feeling, my input on "living" with the device.  Just awesome.

I arrived at 12 PM and left at 4 PM and drove north.  Then I had cheated and had a glass of great wine and a big steak.  Doesn't get much better than that!

The reality of Heart Disease

I am in San Jose, CA this week for business with my customer.  Last night when I returned after a very long day, on my feet briefing the entire day, I changed to go grab some dinner.  I immediately noticed swelling, or edema, in my legs.  For the uninitiated, edema is fluid retention that pools in your lower extremities and in bad cases in your abdomen.  How do you know you have it?  Well the sock line that a normal person gets is replaced with a muffin top so to speak of fluid.  When you press your finger into the soft area it remains indented and feels like firm sponge cake.  For me that is a in your face reminder that I have end-stage heart disease.  It is a symptom of poor profusion or circulation.  Your kidneys are not fed sufficient blood flow/volume to remove or filter the waste product, electrolytes, salt and fluid from your blood so it backs up.  So, I swallowed my pride and told Heidi and she told me to call the VAD coordinator.  I didn't have any Lasix (Fuorosemide), the water pill, so I had to have a prescription called in.  When I made the call I was afraid I was going to be sent to the hospital.  In talking through the situation with the coordinator I realized that because I was on my feet all day, wearing dress shoes that were tight, in a conference room that was poorly temperature controlled (it was either 76 or 65 all day) that I probably retained some fluid.  That and having eaten out 4 meals in a row probably laden with salt.  Fortunately, the Lasix worked its magic and after peeing 6 times in two hours I was back to chicken legs.  I took another one this morning, worked out for an hour, and ate two banana's to watch my potassium.

The other day I wrote about the bad days make you realize the good days and value them more.  Last night was a BIG wake up call, a reminder that despite the fact that I look very healthy and am otherwise doing all the right things, the reality is that my LVAD is life support, and while waiting for a heart transplant, in its simplest form, I am dieing.  Some may not see it that way, or think that it is morbid.  It is hard to think, hard to talk about, and hard to write it hear because I know that people who love me and care about me will read it.  But, if my pump fails I am in the weeds.

The irony of all of this, lol, is that I am heading to Pleasanton, CA to Thoratec, the manufacturer of my Heartmate 2 LVAD, today for lunch and a tour.  My timing is impeccable:-)

Living the dream, It's a nightmare, but at least I am in it.

Since I had my LVAD surgery last April nearly every day has been great.  I can think of about 3 days total that have been hard.  Two of those were in the first month after surgery.  I think the first one was about 3 days after surgery and I was still in shock, just couldn't talk and share my thoughts.  The next day that was hard was coming home from the hospital.  It sounds crazy but just the fear of not having someone to care for your critical medical needs was frightening at that time.  Last night was another of those days.  Nobody did anything and I didn't plan on it, but it was a long night.  Living with the Thoratec Heartmate II LVAD is so easy, most of the time.  I find it easy to ignore little things like the rubber cords ripping my arm hairs out, or the cord getting snagged on things.  But sometimes it is just too much.  Last night the cord wrapped around my leg 3 different times while sleeping at each time I rolled over the cord ripped hair out of my thigh or shins.  Then I got up to use the rest room and my pillow fell off the bed and onto the cord.  Somehow it stuck to the cord and ended up pulling the PBU off the nightstand and crashing onto the floor in the middle of the night.  I got up to go to the gym at 530 and the pillow that I had thrown off the cord earlier in the night was blocking the door out of the bedroom so when I tried to leave in the dark the door wouldn't open and I crashed into it.  Suffice it to say I was in a raw mood at the gym.

I will forget about this by tomorrow, but I am writing about it because it is too easy to forget about a day like today in the bigger picture of how I feel.  For that reason it is important to capture it and share it because the message is that yes, a great many of your days will be good, but days like today suck!!!  It is a raw and real reminder of what I am going through, and it is hard.  I don't feel sorry for myself, I am just pissed.  People will say my attitude is something that I can control, I need to take responsibility for that.  HOWEVER, in every support group meeting I have been to for both the LVAD and transplant, the therapists and patients are quick to point out that it is ok to FEEL what you feel and when you feel it.  It reminds you to be thankful for the good days.  It reminds of being in the military when my 1SG would say during PT in the morning that,"Pain is good, it means you are alive."  

I have to thank Meech for my post title today. I went to cardiac rehab with him and while he was large and loud, he had something funny to say every day.  Great guy and I wonder where he is and how he is every day!

Must watch this video

Here is a great video of a heart recipient on the exact minute of his 10th anniversary from transplant. Short, 3:45, but worth watching.
10 Year Anniversary Video

Interesting LVAD Story

I just received this story from a Google Alert that I get daily. Such a great story and it really summarizes the details nicely. The newscaster says his batteries last 7-9 hours although it has been my experience for 10 months that they last consistently 15 hours. The cardiologist said it was just approved last year, but I think he meant to say that it was approved for Destination Therapy (DT) just last year, it has been FDA approved for Bridge to Transplant (BTT) since 2004. The other funny part of this story is that while I am from the Hudson Valley, just down the road from Albany Medical Center, a close family friend of ours, someone my dad went to HS with was the first heart transplant recipient at Albany Medical Center. They no longer do transplants but it is nice to see them using the LVAD technology as I think it is a miracle. I have debated just living with this for as long as I can that it is so good.  Albany NY Medical Center LVAD patient Video

Making a List and Checking it Twice

I sat down last night and began to brainstorm how to get ready for the Transplant event. I watched an episode of Top Chef on Bravo the night before and it got my mind thinking. On the show the did Restaurant Wars, each team having to design and buy decorations for a restaurant as well as create a menu and cook for 100 people in 24 hours. What got me thinking was how they missed some of the big picture things that seemed so obvious. So in creating my to-do list for when the call comes I tried to see the big picture. I came up with a list of things I think we need to have a plan for. These are: 1) What to pack for me and Heidi 2) Create a call tree and notification plan (need to know, would like to know, should know) 3) An initial communication for Caring-bridge to alert people who are following my story 4) Child Care plan 5) Emergency plan - if something tragic happens who to call, where are the critical documents, what are my wishes etc. 6) Fundraiser - Do we want to do one, where, how? 7) Come home plan - When I first came home from LVAD surgery it was crazy trying to figure out life outside the hospital, and it was frightening. What do you do after transplant? 8) Rehab Plan - Cant drive for 60 - 90 days so how do I get to cardiac rehab 9) Contact List - Emails, phone numbers, addresses of people that I know and interact with as well as Heidi For those that read this are there other things we should work on? These seem to be the big items that I have pulled from other books/blogs.

Clinic Day

Yesterday was clinic day.  I go to the LVAD clinic about every 6-8 weeks.  This usually consists of a blood draw, some time with the VAD coordinator who reviews my device log and care history (daily weight, temperature, and VAD numbers....PI, speed, flow, power), and then some time with the doctor.  Yesterday the transplant coordinator came to visit me and I spent about an hour with her.  We discussed what our response would be if I was called with a heart.  Currently I want to get to the end of April so my FMLA resets and it gets me closer to the summer months.  I explained that to Nancy, the Transplant coordinator, I think she understood.  We talked about the chain of events if I was called.  Specifically who would call me, where I would need to go, how fast I would need to get there, what I could and could not do (stop eating and drinking immediately and no more Warfarin).  In short I need to get ready.  Her advice was to wake up every day and say, "I am getting the call today."  So that means I need to accelerate the signing of our will and living directive, need to organize a fund raiser, set up a call list, set up a communication plan, child care etc.  There is a lot of stuff to do.

I have been sleeping great for many many months since I came home.  Last night I found myself having restless sleep and constant thoughts/fears/dreams about being called for a transplant, arriving and seeing nobody I knew (different doctors and nurses), unable to find my family.  I was so afraid of dying.  I feel week for saying that and honestly am shocked that I had those dreams all night long.  I thought I was further along the process than that.  I find myself wondering what it will be like to have a different heart in me.  I have a very strong sentimental streak in, and I protect things I care about.   I find myself asking am I still me if I have someone else's heart in me?  It makes all the sense in the world and at the same time no sense at all.  I am very conflicted about it.

I am trying to find a calendar tool that will allow me to record my workout activities on my blog.

Time to get focused

The phone rang at 3:30pm today and it was the heart clinic. They wanted to confirm my insurance coverage and make sure that there had not been any changes with the new year. I thought about it for some time and what I concluded was that they were verifying patients they expect to transplant this year. By my count I had 120 days of 1B time from April to August, then about 45 days of status 2 time, then back on 1B on September 15 till now. So that makes 240 days, or just about 8 months on 1B. I can't get an answer about where I am on the list but I am guessing todays's call should be a wake up call. I am not sure if I am scared or excited. I feel so good right now, but it is just a veneer for it could change tomorrow. The reminder that my LVAD is just really life support is sobering. So, I will just continue to put one foot in front of the other, be happy for each healthy day and make sure I am ready to go. Thank god for the YMCA 400yards down the road so I can work off the stress. Less than a month till spring training and just over 4 months till the Van Halen concert at the Xcel Energy center!!!!

Not just on Grey's Anatomy

When I was first admitted to the hospital, after the doctors told me I was dying, they offered me two choices.  First I could get a transplant or a LVAD.  I laughed and said, "That thing from Grey's Anatomy was real??"  Turns out it definitely was.

Turns out lightning does strike twice.  If you saw the Heart in a Box episode you will know what I am referring to.  While I have been aware of this trial and therapy for a couple of months this is the first article that I have seen that talks about it.  There are some really cool YouTube videos as well.

http://bostonglobe.com/metro/2012/01/11/beating-heart-transplants-could-boost-success-rate/XG4Jzwy4ER9K1rIvGZfGyM/story.html

Link to Latest Transplant Stats

I just got this link from a Google Alert on Heart Transplant.  Since I live in MN I am in Region 7.

http://www.myhearttransplant.net/the-transplant/newest-heart-transplant-wait-list-statistics.html

Some excerpts from the article:
* In 2011, 1,760 patients on the heart wait list received heart transplants. That figure represents a decrease from the 2,333 hearts transplanted in 2010 and the 2,211 in 2009.
* Currently there are 3,124 patients awaiting heart transplantation in the U.S. This figure changes immediately depending on adjustments. Below is a breakdown of patients currently on the wait list and actual transplants by region.
* Region 7 – Illinois, Minnesota, North Dakota, South Dakota, Wisconsin – Currently waiting are 389 candidates. 175 heart transplants were performed in 2011.
* The breakdown of heart transplants by blood type in 2011 are listed below:

• Type O = 719 Waiting = 1751

• Type A = 711 Waiting = 1015
• Type B = 238 Waiting = 327

• Type AB = 92 Waiting = 70

Below are the statuses on the current heart transplant wait list:
Status 1A = 276
Status 1B =935
Staus 2 = 1,0167
Status 7 = 938

A new year and a new challenge

This is my first blog post ever.  It is Sunday January 8th, 2012 and right now the Giants are beating the Falcons in the early playoff game. 


I wanted to capture my thoughts along the way to my transplant.  It is funny how it has become mine even though it is not guaranteed and I have no idea when or even if it will occur.  Since my LVAD surgery last April I have recovered and done well.  However, no amount of hard work and discipline on my part has allowed me to overcome the damage to my heart.  My most recent echo showed an EF of 10.  Despite the low number I have completed five 5K's, albeit as a walker, since my surgery.  My personal best is 36 minutes.  In August after no remodeling and many discussions with my doctors we decided to move forward to transplant. I am currently on the transplant list as a status 1B.  I have been 1B since about September 15th.  Because I have a LVAD I get 30 days of 1A time without being hospitalized and provided I remain healthy I will take the 1A time in June after school gets out for the kids.


Emotionally I am in a really good place right now.  For 9 years I ran as fast as I could away from my heart disease.  I didn't even know I had heart disease, but that is another discussion.  We couldn't talk about it in our house.  I just ran from it.  Amazingly, when I received the first diagnosis of heart failure I was relieved.  I didn't have to run any more.  Now as I move forward to the next step my attitude is more about refusing to let this define me.  I try every day to live my life as normally as possible and not be a heart disease victim.


Which leads me to this blog.  Now that I am on this journey and fight for my life I want to capture what I am feeling.  I have been through so much in the past year, but as I have experienced with my own family, I am finding it heard to remember some of the things I went through.  So I hope to capture my thoughts here.........