It is probably better if you travel to the direct link as it has photos... AND the CircuitSurfers.com site is one of my favorites as it is very innovative:
http://circuitsurfers.com/2011/06/22/the-joshua-story-ii/The Joshua Interview:
Editors Note: Josh is a HeartMate II recipient and is awaiting a heart transplant. Please click here if you are unfamiliar with his story and would like to see how we got to the point of doing this interview.
On 06/09/2011, Teutonic 13 wrote:
Hello Joshua, this is Frank from Circuit Surfers.
Wasn’t “Joshua” the name of the computer in “War games”? It was something like that.
Anyway let’s begin the interview:
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?
(When you get this- just reply to it- and we’ll do the interview that way- if your ok with it. Please ask questions as well- or offer your opinions of the situation, me- the blog whatever-… keep it raw and keep it real…)
Frank
On o6/15/2011, Joshua wrote:
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.
On o6/17/2011, Teutonic 13 wrote:
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”.
Q 2: 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?
Josh
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.
Q3: 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?
Josh
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.
Q4: 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?
Josh
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.
On o6/18/2011, Teutonic 13 wrote:
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).
Q5: 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?
Josh
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.
Q6: 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”
Q7: 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?
Josh
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.
Q8: 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.
Josh
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.
Q9: Is a new heart the relief pitcher?
Josh
No, more like extra innings
I’m thinking that the guy above is going to slam it home…
On o6/18/2011, Joshua wrote:
Josh
Frank, have you always lived in Texas ?
You mentioned your Dad being in France…
Its the obvious passion you possess, drive to juggle numerous tasks and callings while maintaining your profession that doesn’t make you “normal” And this is why you can’t write “normal” stuff . normal is average…. Some are born/wired not to be “just average” and it intrigues me… I am certainly not normal or average.
It’s apparent that you are on a mission (that only a few can compete with and complete). To share what you know and selflessly build upon it with others. Folks will be inspired by and or envy/jealous of you i.e.: that email you sent out of a colleague who unethically dislikes your website/blog and it’s theme.
IMHO I say ignore the distractors. Do not delegate time to launch rebuttals etc, as they want the attention. “speak to the hand” approach will leave you less stressed to do what you do best.
Will send complete answers to your questions by tomorrow, the latest. Been alone last few days (by choice) since my wife flew to care for her dad. Feels good to be totally autonomous even for a brief shining moment. However I promised my wife, I will allow family members to sleep over and babysit me. :-)
Josh
On o6/19/2011, Teutonic wrote:
Nah. I just moved to Texas 3.5 years ago. Was doing alot of Locums work, falling behind on everything, away from my family so much it was ridiculous.
Finding a job in perfusion with the amount of experience I have is hard to do. People either think there is something wrong with you, or they feel they are going to insult you with a lower salary offer. It sucks.
I got a break from two really decent guys out of Dallas, Loyd Yancy, and Steve Sutton. They trusted me, and I am grateful to them for that.
I did the blog thing initially because I wanted to write it down. I wanted to write something that was perfusion and the human equation part of it.
It started out as a directory for perfusion related topics. Very dry stuff- but important information to people that may not have the resources or professional affiliations to get that info quickly.
I’m talking about our other perfusion friends in smaller countries around the world (have had 116 countries come to visit).
Then it morphed into something else. What that something else is- I do not know. But for some reason it just feels right.
I don’t know where that conviction comes from, but it just seems like my gut instinct on writing this stuff is that it’s there to serve a greater purpose. Who knows what that truly means, but I trust my instincts.
The fact that it’s not for profit is exhilarating in terms of the freedom it confers on the blog.
I can handle the flack, but don’t like embarrassing myself- and I may have in terms of my response to the event you referred to.
So a couple of thoughts to close out this interview:
Q 10: What do you know of perfusionists? Have you met any, and what if anything would you like to say to us as a profession?
Josh
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.
Q 11: Do you have any questions regarding us? Anything you want to know about what we do- see- or feel?
Josh
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”?
Teutonic13
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 unforseen 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.
On o6/22/2011, Teutonic wrote:
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 but can’t be you.
Safe Journey to You & Yours …
Sincerely,
Frank Aprile, BBA, LP, CCP
AND THE GOOD SAGA CONTINUES...
After sitting 30 days of Shiva for Gabe, I am still at a loss, so many questions to be answered. Wondering of the mishaps that occured during a night of celebration. No one is to blame, Not Gabe nor his wife Lori. No blame on his friends, Doctors or hospital. Gabe was in a PERFECT CIRCLE of divine love and safety... but still slipped through and into the unknown that eventually took him from this earth. His death wasnt directly LVAD failure... he devoted his life to design a better LVAD for those in the future...
Me and my wife, friend and my Caregiver.
