WHERE HAS TIME GONE? Over a year since I posted last!

WHERE HAS TIME GONE? Over a year since I posted last! Wowwww. Doesn't seem it! now I know why I have received messages and emails asking " Are you Dead? Is he dead? Are you ok? What happened to you?"    Then I respond back and I get... "But I thought you were dead! Your Not dead! :-) and it goes on and on...

NOPE, im not dead... If I am then this place where I have been for over a year must be heaven.  

I send out BIG HEARTFELT apologies to those who have followed my blog and were left hanging on how I was... I really didnt consider posting what I have been doing because my email is up on the top of this blog header and felt i would keep in touch with those who directly contacted me.

Quite frankly I needed a break... A true "SABbatical" (we will explain in another future post that my SABbatical entailed running away and  joining a flying circus in a community where all are judged by the WHO in them and not the WHAT!)  I spent myself to the point i needed to Enjoy the LVAD  That i was blessed with for myself and only myself... i almost literally (but not really LOL )have lived an LVAD-FREE life.

 As my blog's theme indicates... 
I poured my whole self into helping folks start LVAD support groups, promote Online Support groups... Advocate for and spoke of my firsthand experiences with LVAD LIFE.  I tried to bring humor to the daily forefront in accepting our NEW NORM with the LVAD... the wires and its gadgets. I visited LVAD patients in hospitals in several states... Spoke to potential LVAD recipients... Participated and was invited to many  Annual Meetings, Summits, symposiums, meet-ups... Interviews, many memorial services for those LVADers who fought the good fight til their last breath...  

I have even participated at COLUMBIA PRESBYTERIAN on a year long study on how slowing the RPMs of an LVAD affects The brain. This SCORR study mapped my brain and will or has helped other LVADers and Stroke victims...

We have reached LVADers and the Health sector on a domestic and international level.  I have met many good folks fighting the same good fight as I am. I poured my soul in helping all that came my way and at the same time i was helping myself in an effort to thank those that have given me a quality of life that is miraculous!  Just to mention a few... Dr Yofi Naka and Columbia Presbyterian LVAD team... THORATEC and my family... I can go on and on with thanks but for now I'd rather keep this post as a quick catch up. 

Lastly, because I can go on and on and on :-) I have also Stood up against bullies and Egos that tend to interfere with our special LVAD community that I call HOME...  So as you see, I selfishly deemed myself  accomplished  and took a well deserved long vacation from LVAD Advocacy. 

Finally on another LVADer's Life's progression... former VP Cheney has written a book on his Heart failure experience... I havent read it yet but hope he mentions his HeartMate II ! Here is his interview itinerary that I received through an email: 
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As you may have heard, former Vice President Dick Cheney has written a new book about his 35-year battle with heart disease. Two chapters of the book are about Mr. Cheney’s experience with HeartMate II, which was implanted in 2010 and supported him until he received a heart transplant in 2012. The book is called “Heart: An American Medical Odyssey<http://www.amazon.com/Heart-American-Medical-Odyssey-ebook/dp/B00BSBR6Y8/ref=sr_1_1?ie=UTF8&qid=1382144257&sr=8-1&keywords=cheney+heart>,” and he wrote it with his daughter and his cardiologist.

Mr. Cheney plans to speak on a number of TV shows this week, starting with an interview on 60 Minutes with Dr. Sanjay Gupta. We encourage you to tune in, and to let your friends and families know about the broadcasts.

Some of the shows currently scheduled to feature Mr. Cheney this week are:

60 Minutes. CBS, Sunday, Oct 20 at 7:30 pm ET/PT (following NFL Football) - Preview<http://www.cbsnews.com/video/watch/?id=50157418n>
The Today Show. NBC, Monday, Oct 21. Check your local listings for time - Preview<http://www.today.com/books/dick-cheney-i-said-goodbye-family-heart-surgery-8C11409516>
The Dr. Oz Show. Wednesday, Oct 23. Check your local listings orDoctorOz.com<http://www.doctoroz.com/> for local station and time - Preview<http://www.doctoroz.com/episode/dick-cheney-exclusive>

AND THE GOOD GOOD SAGA CONTINUES ;-)... 

Dear Wife,Mom,Family,Friends,Columbia New York Presbyterian and Thoratec... THANK YOU!!!

Thank You for Fighting The Good Fight and saving lives with your gifts, dicipline and passion. I will never run out of ways to thank you. Not a Single Day goes by that I dont wake up and I Thank you!

And The Good Saga Continues...

HEARTMATES TOO WITH THE HEARTMATE II / "LIVING THE NEW NORM HAPPILY!"

WHO HAS THE LVAD?

Look carefully, the ugly one in the grey hat has the LVAD :-)... Me! My driveline exits my body, yet for a moment, my wife gives me a break wearing my batteries and controller. My whole family plays a roll in living the NEW NORM with me ! My wife and family and my LVAD... Living the new norm happily :-)

AND THE GOOD SAGA CONTINUES...

HAPPY LVAD - WEEN / HALLOWEEN

HAPPY HAPPY HALOWEEN TO MY FAMILY/FRIENDS AND THE FOLKS THAT KEEP ME GOING AND GOING AND GOING... :-)

AND THE GOOD SAGA CONTINUES...

Before The LVAD: 2 YEARS AGO MY HEART ATTACK TOOK MY LIFE AWAY

2 years ago i had a Widow-Maker of a heart attack. I couldnt walk more than 5 feet without gasping for air and resting from being too tired to put one foot in front of another. 2 years later, I have an LVAD and it has absolutely restored my life to near normal. I emphasize near normal as i am restricted from taking "true" Showers and I can not swim. Also I can not participate in contact sports however the trade-off is living a life away from hospice care or worse... being on the otherside of the ground... 6 feet under.

Currently I am on the waitinglist for a heart transplant and on an LVAD therapy called "Bridge To Transplant". If i had to do it all over, i would make the decision to have the LVAD implanted... in a heart beat (or less).

Dr Naka/The Man/The Surgeon responsible for giving me my life back

I look back on my dark days of October 2009 and NEVER thought i would make it this far. It wasnt until late November 2009 when i had the LVAD Implant.

At the time of this post i am fortunate enough to make breakfast in bed for my beautiful Wife and Mother :-) Both dont know, but both will be surprised.


Thank you to the Good folks up Columbia-NYPH, Thoratec, Dr Bonoan, My Family/Friends and last but not least God, my Faith.

And The Good Saga Continues :-)

EVERYDAY LVAD and Dr. Naka / Dr Deng's Book

My Life With The LVAD is not any different than those featured in the book or those in the future that will need this modern day miracle. An everyday miracle that folks like Dr Oz, Dr Naka, Dr Deng, Dr Takayama and all LVAD/Transplant surgeons strive to perfect even further. Thank You

AND THE GOOD SAGA CONTINUES...

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NEW Photos Of Former Vice President Cheney Making Giant LVAD Step October 2010

I have been following the Former Vice President's LVAD story on a daily basis since the news broke in mid July. I too have an LVAD, and to see a Public Figure with VP Cheney's recognition receive an LVAD implant and perform about his daily activities and duties, sends reassurances to the LVAD community and to the public as a whole that a Life can be saved and restored with the same or even more intensity; despite End Stage Heart Failure.

Below I found these great photos, the first of the Cheney's in public since the VP had his implant.

This photo above of the VP and his wife is my favorite... the proud and humbling smile caught on the VP's face is that given to a wife for her unconditional love and being his #1 Care-giver!

Lynn Cheney interviewing her own husband.

Don't let the "frail" appearance throw you off, Life with the LVAD improves Day By Day, Week By Week and Month By Month. I am very happy and proud that VP Cheney is winning the good fight.

And the Good Saga Continues...

The General's General, The One You Want Leading The Good Fight For Your Cause.

Margaret Flannery was the first from "LVAD Nation" to meet with me and my wife. With patience Margaret explained in depth about the LVAD implant, the peripheral procedures and testings involved in order to become eligible.

Her confidence, professionalism and approachable demeanor made my decision to trust Columbia Presbyterian Hospital to perform the open heart surgery/LVAD implant very easy. A short time later Margaret made my decision even easier by bringing in Dr Naka, the surgeon who would perform the surgery. Both Dr Naka and Margaret showed me a replica of the HeartMate II LVAD. I was able to hold it and realized that this device would bring back most of the stamina that I had lost. I felt that the 2 of them were the Best of the Best Columbia had to offer.

10 months later, LVAD in place, from the bottom of my LVAD I am thankful that folks like Margaret and Dr Naka are affiliated with Columbia Presbyterian hospital.

And the good saga continues...

Columbia Presbyterian Hospital VAD SUPPORT GROUP September 28 2010

Today's LVAD Lunch & Learn series proved to be very productive. 1st on the agenda was Thoratec Product Update presented by Teri Gardner, RN Clinical Consultant from Thoratec. The update showed the future generations of the LVAD and LVAS. Smaller, more user friendly and wireless... yes, NO wires! However, the wireless is still in the distant future but on the radar screen of Thoratec. Bravo.

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Dr Yoshifumi Naka, my Surgeon, and the Director of the Cardiac Transplantation and Mechanical Circulatory Support Program, stopped in and greeted everyone between the 1st and 2nd items on the agenda. Dr Naka was greeted by a round of applause and more applause from the audience as he left. After all, Dr. Naka had his skilled and gifted hands "touch" all of our hearts in more ways than one.

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2nd on the agenda was Traveling with the LVAD, presented by Khristine Orlanes, ACNP. Informative topics included "Must Haves at All Times", "Air Travel specifics" and "Land Travel". During this session, discussions led to the proper handling of our LVAS as well as offering information to the airline and TSA for security reasons.

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3rd on the agenda was "Preventing and Managing Infections", presented by Dr Nir Uriel Proffesor Clinical Medicine, Center for Advanced Cardiac Care, Columbia University. This topic was engaging as it addressed infections at the driveline Exit-Site. All in attendance were told and showed what to look for and how to avoid an infection. Well over 40% of deaths related to the LVAD is due to infection.

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Lastly, there was a spread of good healthy food, buffet style, where all the LVAD recipients, care-givers and other interested parties mingled and shared their war stories :-) at the newly built River Terrace, Milstein Family Heart Center, Columbia Presbyterian Hospital NYC.

And the good saga continues...

2nd LVAD LUNCH AND LEARN

2nd LVAD LUNCH and LEARN... They are great as it focuses on the

LVAD recipient/patient/care-givers/Families ONLY!

The last one pulled in over 20 LVAD recipients. I am hoping more of us is there.

And the good saga continues...

Large LVAD Community Cheering Vice President Cheney

After attending the HeartMate II Ambassador Summit in Pleasanton, California, I was constantly asked how VP Cheney is faring. I only know as much as the rest. My knowledge of VP Cheney's recovery is as good as what's being released in the media. In an earlier post, I cited remarks made by his daughter, Liz Cheney and linked a radio interview that she made, where she stated that her Dad is doing well.

I would just like to express that there will be a day, maybe now, that Former Vice President Dick Cheney will become an LVAD Recipient, rather than an LVAD Patient. That threshold is realistic and obtainable. It is a point in that person's life that he or she says, "Yes, this LVAD has restored my life and stamina to where it was years ago. I do have restrictions however it is a wonderful trade-off to feel this good.

So again from the bottom of our LVADs, the LVAD community wishes Vice President Cheney a happy recovery.

And the good saga continues...

“What can we do to make THORATEC better?” My answer was “ Build ALOT more LVADs. Save more lives”

Every since the LVAD was implanted in me, I have adopted the phrase “And the good saga continues…”. So all along my “good saga”, THORATEC has proven time and again that it is an organization that is sincerely committed to their visionary mission of saving lives. They are manufacturing a product whose “end users” are in different stages of heart failure, in which mine is End-Stage Heart Failure.

In more ways than THORATEC may ever know, their product, the HeartMate II is a gift… a gift of life, and life is the most precious commodity anyone can have.

THORATEC has proven to me that they are always looking to improve an already well-run organization. They go to extreme and tedious lengths to reinforce quality control at all levels in creating the components of the HeartMate II.

The participants of the Summit were treated to a tour of THORATEC’s manufacturing plant where I found employee morale to be comprised of pride and accountability. The participants of the summit were also engaged in a round of discussions to assist THORATEC in their future decisions and directions.




And I can say from the bottom of my LVAD that each summit participant took pride in answering any questions THORATEC posed as we all knew that sharing our experiences, giving our opinions and ideas will better the quality of life of future LVAD patients and their families.

One of the easiest questions asked of me was “What can we do to make THORATEC better?” My answer was “ Build ALOT more LVADs. Save more lives” ;-)

Being a participant at THORATEC's HeartMate II Ambassador Summit has been a phenomenal experience I will never forget.

Thank you THORATEC… from the bottom of my LVAD… each and every employee.

I am who I am TODAY because of a lot people and their passion. Let's start here...

This Wednesday at 5am, My Wife, Rosie and I are flying off to California.

We are attending Thoratec's HeartMate2 Patient Ambassador Summit 2010. We are honored and looking forward to sharing what we will learn once we come back.

Posted in the photo is part of LVAD NATION from Columbia Presbyterian Hospital in Manhattan... I am who I am now because of them and would like to thank the ENTIRE staff there.

Not pictured are Margaret, Donna and the many doctors & nurses that saw me through surgery and recovery. L to R Rosie, Jennifer, Anne Marie, me and Khristine... pictures of Margaret and Donna soon to follow.

And The Good Saga Continues...

THE LVAD IN AN ILLUSTRATIVE PERSPECTIVE

And The Good Saga Continues...

Because there is an LVAD, today is my Birthday! From The Bottom Of My LVAD... Thank You!

Because there is an LVAD, today is my Birthday!

Thanks to ALL that made this happen!


From The Bottom Of My LVAD... Thank you

And the good saga continues...

Vice President Dick Cheney Postpones September 2010 Scheduled Engagement

"Vice President :-) We Are All Routing for you!!!"
FromTheBottomOfMyLVAD

ALL INFO AND PHOTO BELOW IS "REPRINTED" FROM : http://pressofatlanticcity.com/life/article_b5626606-af9a-11df-9f6c-001cc4c03286.html?mode=image&photo=0

...that i originally found on TWITTER:

Former Vice President Dick Cheney's Sept. 18 appearance at the Atlantic City Hilton Casino Resort has been postponeD.

The Hilton issued a press release announcing the postponement this morning. There is no information about a new date for Cheney's appearance. Refunds will be available at the point of purchase.

The former vice president's visit to Atlantic City is the final event in the Hilton's summer speakers series, which as already brought President Bill Clinton, Bill O'Reilly and Glenn Beck, and Ann Coulter and James Carville to the resort.

Palimed.org Adresses The LVAD

I only knew the Left Ventricular Assist Device (LVAD) existed just one week prior to my LVAD implant / surgery. 11 days later... I was home with my LVAD in front of my computer looking up the Who, What, When, Where, and Why of the LVAD.

One of my first interesting finds about LVAD usage was from http://www.pallimed.org/

This website is run by a group of passionate Medical Professionals who happen to be practicing physicians within The Hospice/Palliative Care field. The Pallimed's website offers ideas, debate and methodologies of their work within... allowing seriously ill people to live with dignity, control and freedom of choice; all in an effort to offer Quality Of Life... throughout their serious illnesses at the end stages of life.

Having an LVAD and experiencing a healthy existence, again, I can only imagine that the LVAD will prolong many lives that otherwise would have expired just a few years ago.

However, it does not stop there. The same Doctors and Medical professionals that run PalliMed's website and Blog are also spearheading Hospice and Palliative issues via Social Media/Networking. They can be found on Facebook, twitter...

Below are direct links to Pallimed's

articles mentioning the LVAD :

Pallimed: A Hospice & Palliative Medicine Blog: Destination LVADsNov 12, 2008 ... We see a LOT of LVADs at my hospital. They truly can be a bridge to better things--but often they are a "bridge to nowhere". ...
http://www.pallimed.org/2008/11/destination-lvads.html

Pallimed: Case Conferences: November 2008Nov 13, 2008 ... Most recently, she went to the OR to have her current LVAD replaced with a ... Patients on LVADS or BIVADS are physically restricted... http://www.pallimed.org/2008_11_01_archive.html

Pallimed: A Hospice & Palliative Medicine Blog: Heart failure ...Aug 27, 2007 ... LVADs, in the simplest terms, are implantable devices which augment the pumping ... Full-sized LVAD image (& further discussion) at WebMD, ...
http://www.pallimed.org/2007/08/heart-failure-devices.html

Pallimed: A Hospice & Palliative Medicine Blog: Rise of the MachinesDec 10, 2009 ... For those of you unfamiliar with LVADs, essentially they are .... Personally, I'd take the LVAD, at least at a younger age (and if you are ...
http://www.pallimed.org/2009/12/rise-of-machines.html

Pallimed: A Hospice & Palliative Medicine Blog: Holiday HeartAug 15, 2010 ... At the time, LVADs were used only as a bridge to heart transplant. ... The number of patients receiving a LVAD as a bridge to transplant or ...
http://www.pallimed.org/2010/08/holiday-heart.html

Pallimed: A Hospice & Palliative Medicine Blog: Pall-PourriDec 3, 2008 ... Many of the cases submitted this year for the Annual Assembly case conferences were on LVAD's. We ended up selecting one. December 08, 2008 ...
http://www.pallimed.org/2008/12/pall-pourri.html

Pallimed: A Hospice & Palliative Medicine Blog: 09_12Dec 1, 2009 ... For those of you unfamiliar with LVADs, essentially they are implanted pumps which are inserted directed into the heart and major vessels ...
http://www.pallimed.org/2009_12_01_archive.html

Pallimed: A Hospice & Palliative Medicine Blog: 07_08Aug 3, 2007 ... Journal of the American College of Cardiology has a trial looking at left-ventricular assist devices (LVADs) as destination therapy in ...
http://www.pallimed.org/2007_08_01_archive.html

Pallimed: A Hospice & Palliative Medicine Blog: NYT Sunday ...Jun 20, 2010 ... I come across these situations fairly often working at a large hospital where the heart transplant and LVAD services are quite aggressive. ...

http://www.pallimed.org/2010/06/nyt-sunday-magazine-turning-off.html

Pallimed: A Hospice & Palliative Medicine Blog: 08_12Dec 3, 2008 ... JAMA has a paper looking at some aspects of the 'natural history' of LVADs (see recent post). The paper adds some further detail to the ...
http://www.pallimed.org/2008_12_01_archive.html

Pallimed: A Hospice & Palliative Medicine Blog: Quality vs ...Aug 15, 2008 ... LVAD, improved symptoms and survival, lots of care burdens, lingering death). The basis of this seems to be several trials of oral inotropes ...
http://www.pallimed.org/2008/08/quality-vs-quantity-of-life-in-chf.html

Pallimed: A Hospice & Palliative Medicine Blog: 07_01LVAD anyone? The other talk that looks pretty interesting to me is the one on Pain Research, although I hope it does not get to bogged down in discussions ...
http://www.pallimed.org/2007_01_01_archive.html

And the good saga continues...

AS THE LVAD SPINS... The LVAD Links Its Recipients Into A Special Community

Since i started this blog, folks come to me with questions about the LVAD. By no means am i an expert, nor medical professional. I am a very lucky man with an LVAD implant and it is grafted to my heart. The LVAD, Heartmate 2, has given back to me what the Heart Attack took away!


Ever since the NEWS broke about VP Cheney receiving an LVAD as well, my email inbox and phone messages are SWARMED by the question HOW IS VP DICK CHENEY?


I wish some words or signals came out of his camp. But i do understand his need for privacy... as I do enjoy my privacy as well. I can only guess that he is doing well and following the course set for him and his condition by his team of Doctors... We hope and pray he is well, but am comfortable in knowing he is in great medical hands... no doubt!

Again The LVAD community sends its BEST wishes and Prayers out to Vice President Dick Cheney! Keep Strong in body and mind!!!

And the good saga continues...

1st Annual LVAD-WIFFLE BALL 2010 MEET

:-) For now, this is a dream of mine. As an LVAD recipient, I must keep active but at the same time I must stay away from strenuous exercise and contact sports.

So it "dawned" upon me, why not stick ball? Wiffle ball?

It is a VERY TAME form of baseball that does not require running. The equipment used is a light plastic bat and ball. Scoring and outs are determined by the distance and location of where the ball is hit or NOT HIT :-)

I live in the NYC area but would hold this 1st Annual CHAMPIONSHIP at a central location or at several locations.

If interested or have ideas to make this a reality, contact me @ LVADone@gmail.com

At this juncture, WIFFLE Inc is not affiliated with this Planned event.

The WIFFLE® perforated plastic ball -

The WIFFLE ball was designed to take the place of baseball, stickball and softball for boys and girls in back yards and city streets. It is made of a tough rubbery plastic – is light in weight and cannot be thrown or hit any great distance. The WIFFLE ball is also an excellent indoor ball.

The Pitches -

The WIFFLE ball is thrown like a baseball and will curve very easily. The diagrams below show how the ball should be held for curving and controlling the ball. Experiment with different grips and releases to find the pitches that work best for you. There is no need to throw the ball hard to produce results!

The Game - played with the WIFFLE perforated plastic ball

As stated above, the WIFFLE ball was designed for use in congested areas. Because the ball will not travel far when solidly hit, ball chasing and base running have been eliminated. An ordinary broom handle can be used if a WIFFLE bat is not available. The size of the playing field is optional, but we recommend a minimum dimension of 20 feet in width at the home run markers (approx. 8 paces) by about 60 feet long (approx. 23 paces) from home plate to each home run marker. The field is laid out with foul lines and markers for singles, doubles triples and home run areas. See sketch of suggested playing field.



The minimum number of players required to play a game with the WIFFLE ball is two – the pitcher and batter – one player per side. The maximum number of players that can complete are ten – five players to a side. If a full team is playing, each side will consist of a catcher, pitcher, double area fielder, triple area fielder and home run area fielder. Fielders cannot move from one area to another when a full team is playing. When more than two players are playing, captains for each side are picked and they choose their respective teams alternately. As in baseball, the game is played with one team at bat and one team in the field. The batting order of the team at bat shall be Pitcher, Catcher, Double Area player, Triple Area player and finally Home Run area player. The rules of play are similar to baseball, however there is no base running. Three outs to retire a side, per inning, nine innings per game. In case of a tie, additional innings are played. For a complete inning, both sides must bat.

An out for the batter can be made in three ways:

The batter can strike out only if he/she swings at a pitched ball and does not foul tip the third strike. Foul tips count as a strike for the first two strikes only. A foul tip caught in back of the batters box does not count as an out.
Fly balls caught in fair or foul territory
Ground balls caught while the ball is in motion, in fair territory. Bunting is not allowed and the batter cannot obtain a base on balls.
Scoring -

Single markers are placed approximately 24 feet from home plate on the foul line. A ball hit in the single area (i.e. the area between batters box and single markers and not caught, constitutes a single. Double markers are placed approximately 20 feet in back of the single markers on the foul line. A ball hit in the double area (between the single marker and the double marker) and not caught constitutes a double. Triple markers are placed on foul lines 20 feet back of the double markers. Balls hit in the triple area (between the double markers and triple markers) and not caught, constitute a triple. Balls hit past the triple markers, and not caught, constitute a home run.

The baseball rules of scoring apply:

Example: A player hits a single – his/her team has a man on first base (imaginary runners). The next player hits a single – the team now has a man of first and second. Third batter hits a home run – three runs score! (The imaginary runners on first and second, plus the home run.)

A batter earns 1 imaginary base on a single, 2 imaginary bases on a double and 3 imaginary bases on a triple.
A runner on 1st advances one base on a single, 2 bases on a double and scores on a triple
A runner on 2nd base scores on a single, double, or triple.
A runner on 3rd base scores on any hit.


Copyright 1954, 1982, 1999 The Wiffle Ball, Inc.

AND THE GOOD SAGA CONTINUES...

One Spin At A Time, A Day In The Life Of A Lucky LVAD Recipient. No Rodeo Yet!

With The LVAD, we must listen to our Doctors and Nurses and KNOW our own limitations and safety concerns while keeping active. Common Sense ABOVE ALL!

Here I am riding an old gentle horse name Delores. I mounted her via a concrete platform with steps, like a loading dock. i did not climb up on her as I would have normally done without the LVAD. On my ride, I was joined by a guide, my wife and daughter.

Everyday I am finding new reasons to love and respect my Heartmate2 LVAD!


Me, Myself and My LVAD, getting to ride Delores on a slow and easy run. No Rodeos yet!

Take Note: The LVAD battery wire (gray) exiting the controller :-)

And the good saga continues...