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The Joshua Interview
Hello Joshua, this is Frank from Circuit Surfers.
You contacted me via twitter regarding CircuitSurfers- and mentioned it was very innovative and that you liked it. I saw your handle LVADone and assumed you to be a perfusionist, never actually considering to read your name and understand what it implied.
There is a lot of your biographical history on the fantastic blog that you write. What was it that made you reach out and decide to blog your HeartMate II experience?
Frank, big apologies for the delay…
My wife flew to take care of her Dad and last night i got back 230am after spending 7 hours discussing Thoratec’s future products. Anyway my response to Q1 is as follows:
Initially my blog started off as a Journal for my family and friends. When I came home from my implant I had many calls throughout the day asking how I was. At some point I was ” tired” of sounding redundant so I told everyone to check out my blog posts for my health updates. After a month or so i noticed that my blog was receiving recognition from interested parties from across the nation and around the world.
So I thought that I would share what I could about the LVAD for those looking to learn. When I first started blogging about the LVAD there wasn’t any real “patients perspective” on the LVAD. It was all Clinical info. I then began to microblog, using twitter to obtain and pass information about the LVAD as well as my blog.
I’ve had a chance to actually read your blog and learn more about you Joshua. I am fascinated by your bluntness and the immense spirit you show to others less fortunate, or as is the case recently, a fellow LVAD recipient. So the next few questions are centered on your “drive”.
Were you always as outgoing and generous with your empathy as you seem to be now? I know you are a New Yorker- or at least a Yankees fan, but were you always this kind, or was the reality of walking on the edge of continuity- a spiritual paradigm shift for you?
I might be less outgoing and generous now 🙂 as I do have restrictions because of the LVAD. I was raised to be selfless… Altruistic, A humanitarian at heart. It runs in the family. Walking on the edge didn’t bring a paradigm shift, but a battle cry to help others get through what I had already experienced.
My approach is that I am further up on the hill then them and I am just calling down to them to watch out for this obstacle or that obstacle.
It is obvious that you are “eternally grateful” to the immediate family of clinicians that were your custodians so to speak as you went through this experience, but it truly was their vocation to do so, just as it is mine to deliver a safe bypass run during open heart operations.
So it seems that the line was crossed at some point, where you stopped being “patient X with the VAD” and became a source of inspiration, accomplishment, and siphon for emotional commitments from seasoned individuals who rarely allow themselves the gift of that sort of intimacy. A departure from their emotional walls. When did that happen? At what point did it become obvious you weren’t just an exercise?
Wow, your observations are keen, spot on! Ive learned from a young age to assess people on WHO they are and NOT what they are. I ran into a doctor who had a messiah-complex and was arrogant to me and my family. Although i was so ill at the time, i did verbally put him in his place. Afterwards each nurse in ICU came in to thank me for straightening him out 🙂 till this day, 19 months later he is behaving 🙂
However from the moment I entered the hospital for treatment of THE heart attack, I made sure I wasn’t going to be Patient X or PtX w/LVAD 🙂 My wife is always amazed how strangers, Professionals… Warm up to me quickly. I can never be wrong by being Me.
Sometimes those who need the most, get the least and end up offering up to others what they themselves need. Is that subconsciously a driving factor for the raw nature of your drive to support and educate others?
I don’t believe so. I never expect much, so being this way I am rarely disappointed or feel slighted. I just realized when my Blog was being noticed by others and the questions began to pour in, i realized there was a place for me to steer folks in the right direction. Connecting the dots.
When I was seven years old, My Father was one of the first Home-Dialysis patients in NY, this was in the early to mid 1970s. So at the age of 7 I assisted my mom placing my Father on and of Dialysis, 3x per week/6 hour sessions. So as you can see, from a young aged I’ve been shaped for this.
As you and I know, you are at the tip of the spear regarding the human equation. Your outcome shall be the tether for future efforts to sustain life and defeat our greatest limiting factor – death. That concept may be totally skewed as the concept of “an end” may be what propels us to solve the problem. Obviously life and death are side bites in most people’s lives. To be afraid to die is to cancel the check on living. So how does that play?
Tomorrow is not promised to anyone. I have always believed that fear of death or not wanting to grow or look old are selfish traits. Fear of death causes midlife crissis et al !? No? 🙂 It Causes folks to be addicted to substances that allows them to get lost in their lives avoiding the inevitable. However, one day the same folks awaken because death is before them.
Is your blog an extrapolation of your will to survive?
Quite the opposite… As it started as a journal for my friends and family to review, it is also something for the future that my children and grandchildren will show to their kids 🙂 and hopefully twill say ” wow he was a good guy” 🙂
Where does the concept of experiment begin and end? Do you feel that you are… an experiment? Or do you trust the next evolution of technology to take you further? And if so- where does it take you?
I take 1 day at a time, but keep my eye on the industry’s progression. As i told one of my surgeons, Dr Takayama ” I am so grateful to have an extension upon my life, knowing my children’s generation will benefit by this.”
We LVADers are “test pilots”, some crash and burn some live on and exceed expectations. we are still in the new frontier of battling heart disease and I don’t mind being an experiment. If humanity does not experiment we will never achieve new and great things. It won’t happen in my lifetime but I would like to see the artificial Heart replace heart transplantation as there isn’t a rejection factor with titanium 🙂
But this opens up a whole new can of worms… Will mechanical hearts allow people to live to 150? This is a deep issue. Deep.
I like to think of your story as a bottom of the 5th inning getting a string of hits- and tying the ball game- when you were down a few runs. At this point is it a tie game for you? There’s a lot of game left and the 7th inning stretch.
Nice analogy… But perhaps I am in the bottom of the 5th,tie game and with 2 outs/full count I hammered out a homerun to take the lead (LVAD IMPLANT). Now we are in a rain delay… Still in the lead.
Is a new heart the relief pitcher?
No, more like extra innings 🙂
What do you know of perfusionists? Have you met any, and what if anything would you like to say to us as a profession?
Pre-LVAD I thought Perfusionists to be Those who control blood flow to a patient under the knife in open heart surgery. Since my own implant… I grew to know more. Minutes prior TO ME JOINING THE “zipper scar club” 🙂
I met everyone on the cardio-surgery team except the Perfusionist. It was not until a month or so after surgery I participated in the only perfusion test/controlled blood perfusion to the brain. The model they created from the study is the only in the world. It will help future LVAD patients as well as Stroke patients. Here I met neurologists psychologists surgeons and my Perfusionist.
He introduced himself and I explained what he had done. This was the first time I knew my own heart was stopped as part of the procedure. I now look at Perfusionists as “our” first Caregivers, so to speak prior to the LVAD taking completely over.
The test yielded info that was able to map my brain function while my pump speed was reduced by 1,000 rpm increments until pump was spinning at minimum 🙂 I was tested for my brain activity as well as 2 or 3 six minute walks. The study was monthly for 12 months. I believe it was called the SOCC study? I posted this info on my blog.
Do you have any questions regarding us? Anything you want to know about what we do- see- or feel?
I know a sense of confidence along with a clear and disciplined head dictates your work ethic and performance. However, we are all human; we are all mortal. On days that you may feel under the weather, mentally and or physically… finding yourself in your scrubs ready to jump into the theater of life saving… Do you compartmentalize your distractions and proceed to surgery? Or is it more akin to an athlete who psyches him or herself into “The Zone”?
I think we are reminded of our human fallibility (the potential to err is in all of us) every day we pump a case. With so many steps and moving parts in the equation, the goal is to choreograph out a perfect “10” every single time. Of course that doesn’t always happen, as unforeseen circumstances may come up, equipment may fail, and the totally unexpected “never thought that was going to happen” moment rears it’s head.
So the “10” ends up being- not the perfect pump run, as much as it represents, the perfect recovery from an adverse situation.
That’s truly when we are “perfusionists”. The ability to adapt to rapid change, think through a previously unencountered problem, and still keep your heart in your chest- is what makes us all so special. Anybody that’s been in the field for a period of time has been in the zone. That’s a cool place to be. But all of us, have hovered outside of it as well.
Eventually it boils down to consistency and “showing up” every day. You have to love this profession or you might as well leave it. I am proud of the field, and very proud of the friends and colleagues I have met doing the same job.
Well Josh that wraps it up. The interview is done, but it feels like a beginning in terms of having gotten to know you, and seeing the kind of person you are. I have learned a lot , and I thank you for your time, effort, and your contribution to all of us who pray for you, but can’t be you.