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: 
:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::
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 ;-)... 

Former Vice President Dick Cheney Shows Off Heartmate II Batteries and Alarms,,,

Shown here is Former VP Cheney at an interview showing his LVAD 14 Hour Batteries. He also removed one of his 2 required batteries... showing that the LVAD system has back-up safety features with audible alarms. This is a great photo!

And The Good Saga Continues...

What A Wonderful Trip It Continues To Be by Steve Dunlap

FROM TIME TO TIME, MY BLOG WILL HAVE GUEST WRITERS WITH THEIR TESTIMONIALS. BELOW IS THE VERY FIRST IN THE SERIES...

A STORY OF AN LVAD JOURNEY WRITTEN BY STEVEN DUNLAP FROM TEXAS.

What a wonderful trip it continues to be. Throughout all of the trials and tribulations connected with heart disease, it continually amazes me the directions life takes you. The fear that one has whenever they begin a journey is real. When I began my journey with chronic heart disease, there was a fear that I would not be hanging around much longer. My cardiologist had told me that he couldn’t do anything else for me.

I was expecting to live the next few months and then go on. He referred me to the transplant team at Baylor Medical Center in Dallas. Before I could get there however, I ended up in the hospital and had to have a pic line and a bag of medicine hanging from my body 24 hours a day. Those of us with LVADs know what it is like to have a bag on you, but the plastic tubes of medicine going into your arm is something else. The worry and fear that the tubes might clog up, having to wait for the home health nurse to get there to change your bandage, wondering if your clothes will rip the tubs out, the list goes on.

When I was approved for the LVAD implant, the work began. I am not a small guy. Whenever I had first gotten sick, I weighed over 300 pounds. Through hospital stays and comas, I had dropped to 240 by the time the implant time had come. My fears had taken on all new meanings. Had I done enough to survive? Is my family prepared for what is to come? Am I really ready to die? I am a church going person. I believe that there is only one God. I believe he sent his son to save my eternal life. But even knowing this, I still had my doubts.

The night before one of the invasive tests, I was really doubting my inability to survive all the mess that I was getting ready to start. I was laying in the comfort of my hospital bed contemplating all my doubts. I said a small prayer, “Show me you are with me.” One of the nurses then came in to give me my “earlier than anyone should” vitals. Whenever she had finished, she began to leave the room. She asked me if I wanted the door open or closed, and I told her it did not matter. She left the room but did not shut the door all the way.

As I turned myself over, it was then that I noticed the reflection on my room’s window. There where darkness had been only a few minutes before, was a perfectly white cross. The way the light was coming from the door and the reflections fit, this white cross came into my room. A reverent “Thank you” came from my heart and peace came upon me. Ever since, there has been no fear. I trust in Him. He knows what I am supposed to do and He is guiding me in my journey. What a wonderful trip it continues to be.

Steven Dunlap Texas, USA

THANKS STEVE!
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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Care-Givers are true Warriors :-)

LVAD Care-Givers/Spouses are the true Warriors of LOVE:-)

And The Good Saga Continues...

THE LVAD IN AN ILLUSTRATIVE PERSPECTIVE

And The Good Saga Continues...

My LVAD Experience Response Letter To A Daughter Whose Dad Is Post-Op with LVAD HeartMate ll

My LVAD Experience Response Letter To A Daughter Whose Dad Is Post-Op With LVAD HeartMate ll :


"As you stated my case is different than your dad's... i have no prior Heart History until my heart attack that happened about 1 month before my LVAD implant. I am also under the age of 50.

But I have LVAD friends in their late 70s and well into their 80s who are more active than they have been in 10 maybe 20 years! I know kids 19, 20 21 year olds with the LVAD. One 21 year old is a Father of 2.

The LVAD is amazing, however... respecting the Driveline and Entry Point and our diets are crucial elements in keeping healthy and preventing infection.

Bravo to your Dad, i think the key to keeping him positive through the 1st week of recovery...

...i kept setting ...Goals Setting SETTING GOALS :-) and achievements... rewarding myself by fulfilling certain food cravings... and other small goals.

Here I am seen helping to "teach" Baseball to my eldest Grandson ...along with my Son-in-law, Daughter and wife.

Also battery location... I use this Holster-shirt that undercover law enforcement wear. i conceal my batteries in these pockets :-) Nice.

I have no neck,shoulder and or back strain as the batteries are stuck to my ribs like a spider web, i barely feel the weight of the batteries while there is not any free motion of the batteries as well.


Holsters are stitched onto an actual shirt and the shirt actually stretches over the driveline that helps to keep everything snug and stable. Lower risk of tugging on the driveline and entry points too.

THE MAIN OBJECTIVE NOW IS FOR YOUR DAD TO PREVENT ALL TUGGING OF DRIVELINE ON THE ENTRY POINT OF THE BELLY. NOT GOOD! IT CAN CAUSE INFECTION. VERY BAD :-) BUT IT IS EASY TO PREVENT THE TUGGING.

I also wrapped a binder around my belly, taught by my hospital, that trapped the driveline as a secondary measure to prevent tugging on the entry point. feeling more secure too.

This style shirt makes "This" LVAD RECIP feel even more comfortable and dignified too ;-)

Sometimes when i dont wear the binder or holster-shirt i wear this small round "thing" called a Hollister that sticks to the skin and snuggly anchors the driveline like a brake, but the Hollister might be given to your dad from the hospital upon discharge... Because it was an LVADRecip from Belgium who told me of the Hollister ...!

I trust that your Dad is being Honored as his biggest Victory in Life has just occurred...

Tell your Dad to Keep Strong, fight the good fight, Heal as Quick as possible and will have fun soon :-)

BTW i am posting this on my Blog without revealing your name.
Thank you... it was a good and important topic to cover. POST-OP LVAD

If you are on Facebook, there is a Greg Wood Memorial HeartMate ll Group there that has LVAD recipients, recipient's family and friends there"

And the good saga continues...

Vice President Dick Cheney Released From Hospital

Former Vice President Dick Cheney was released Monday from the hospital, about a month after doctors installed a new pump in his chest to assist his damaged heart. A spokesman said in a brief statement that the vice president “was released from Fairfax hospital and returned home this morning.”

Associated Press

In this July 8, 2001 file photo released by The White House Vice President Dick Cheney smiles while fly-fishing on the Snake River with his family in his home state of Wyoming.

The former vice president was released from the hospital Monday. His daughter Liz Cheney said he is already planning trips for fly fishing and hunting later this year. Cheney had his first heart attack at 37-years-old and his most recent one in February. He entered the hospital in late June complaining of discomfort, and later disclosed that he was “entering a new phase of the disease when I began to experience increasing congestive heart failure.”
That led to the decision to implant a left ventricular assist device, or LVAD, in his chest in July.

While the treatment is relatively new, one of Cheney’s doctors held out hope last week that the former vice president will be able to return to an active life.

“This can take a person who has a failing heart, who is short of breath, perhaps, you know, walking to the bathroom, and can restore them, not just a sort of adequate functioning, but to normal functioning,” Dr. Jonathan Reiner told Cheney’s daughter, Liz, on Fox News last week. “People with this device can go back to work and go back to full-time work.”

They also can go back to fishing and hunting – two of the vice president’s favorite activities – Reiner added in response to a prompt from Cheney.

Reiner describes the device this way: “What this pump can do is take blood from the failing heart, accelerate it with a turbine essentially that’s spinning it almost 10,000 revolutions per minute and essentially jack that up into the aorta. So, a failing heart may only be able to deliver two liters per minute of blood to the body. A normal heart can deliver almost six liters per minute. It’s about a quarter and a half, gallon and a half, excuse me. This device by itself can deliver over six liters per minute.”

Link:
http://blogs.wsj.com/washwire/2010/08/09/cheney-released-from-hospital/

And the good saga continues...

A Day In The LIFE Of An LVAD Recipient/A Photo Essay

A beautiful Braided horse named Shai

An old peaceful horse loved his muscular Jowls massaged

This guy loved rubbing his face up against mine! It was great!

SUNSET @ CITY ISLAND/NYC

CITY ISLAND SEA GULLS AWAIT FOOD ;-)

BEAUTIFUL STATEMENT ON PLAQUE @ CEMETERY ON THE WATER...

ZOOM IN AND READ ;-)

STARTED DAY WASHING THE TRUCK. BECAUSE OF THE LVAD I HAVE TO STAY AWAY FROM VACUUMS...

Me And My LVAD :-)

The last 7 months I was a volunteer for a Study (SCORR) or (SOCC) at Columbia-NY Presbyterian Hospital. Me and My LVAD :-)




One of the results from the study ended up where my Brain was mapped out under a "Lower Blood Perfusion Test" The model of my brain, under these conditions is THE ONLY ONE IN THE WORLD.

My LVAD's speed was lowered... lowering the oxygen in the blood, hence the brain :-)
This study will assist stroke patients as well as LVAD patients now and in the future.

And the good saga continues...

Vice President Dick Cheney Becomes LVAD Recipient

Former Vice President Dick Cheney Receives a thoratec Heartmate2 LVAD!

Dear Vice President Cheney, Keep Strong, you will do well.

Taken from FoxNews.com:


Former Vice President Dick Cheney, who has a long history of heart problems, has been fitted with a left ventricular assist device (LVAD), which is a battery-operated, mechanical pump-type device that's surgically implanted to help a weakened heart sustain life.



Cheney, 69, underwent the procedure last week at Inova Fairfax Heart and Vascular Institute in Falls Church, Va.

In a statement, Cheney said he decided to get the LVAD implanted after it “became clear that he was entering a new phase of the disease” when he began experiencing congestive heart failure.

About 5 million Americans have congestive heart failure, where the heart weakens over time — often as a result of heart attacks — and cannot pump enough blood. Heart transplants are one solution, but few patients find a donor and many are too old or sick for a transplant.

According to the American Heart Association (AHA) the device is sometimes called a “bridge to transplant” because it can “buy time” for the patient.

“In most cases, people who have LVADS are waiting or are being considered for a heart transplant,” Dr. Nieca Goldberg, medical director of the NYU Women’s Heart Program in New York City told FoxNews.com. ”The device helps people with heart failure that have really reduced heart function due to heart muscle damage. Every time he (Cheney) had a heart attack, some amount of heart muscle was damaged,” she said.

A common type of LVAD has a tube that pulls blood from the left ventricle into a pump, the AHA said on its website. The pump then sends blood into the aorta (the large blood vessel leaving the left ventricle), which helps the weakened ventricle.

“The interesting thing about the LVAD is that people are really mobile,” Goldberg said. “It’s small enough so people can walk around with it.”

The pump is located in the upper part of the abdomen. Another tube attached to the pump is brought out of the abdominal wall to the outside of the body and attached to the pump's battery and control system, according to the AHA.

Patients with LVADs, like Cheney, can be discharged from the hospital and have an acceptable quality of life while they wait for a donor to become available.

“This will help him have a more active life,” Goldberg said. “He won’t be running marathons, but his life will be better with it than without it.”

According to an abstract presented at the American Heart Association's 2005 Scientific Sessions, LVADs reduced the risk of death in end-stage heart failure patients by 50 percent at 6 and 12 months, and extended the average life span from 3.1 months to more than 10 months.

LVADs are being studied for use as a permanent therapy for people with severe heart failure who aren't transplant candidates.

Cheney has dealt with heart problems for much of his adult life, suffering five heart attacks since age 37.

The Associated Press contributed to this report.

And the good saga continues...

Tomorrow Is Not Promised To Anyone... But...

Tomorrow is not promised to anyone. I can attest to that and feel more blessed that the LVAD has given me the quality of life (naturally with some restrictions) I had prior to my heart attack.

The remnants of my silent heart attack left me struggling to walk a maximum of 5 feet, let alone run. My left ventricle ceased to function at an adequate rate to sustain life as I knew it... i could not even hold my 10 month old grandson!

Running, swimming and contact sports are some of the restrictions while with the LVAD, however I am free to enjoy lifting my grandchildren... and trying to keep up with them.

I look back and think that without the LVAD, the best case scenario would find myself confined to my sofa, maybe a hospital bed in my own home... or even admitted to the hospital full time... for up to a year or more awaiting a heart transplant.

The LVAD is a gift that i can never repay to all those committed... to Thoratec, who brought my Heartmate2 LVAD to reality, the team who implanted and grafted the LVAD to my heart. And last but not least, the LVAD Nation located on the 7th floor at Columbia-Presbyterian Hospital. THANK YOU AGAIN AND AGAIN!


What the heart attack took away the LVAD GAVE BACK TO ME. This is priceless.

For the past 7 months, after my LVAD implant, the LVAD has continued to make "me" feel like "me" again!

And the good saga continues...

email me @: LVADone@gmail.com

My LVAD makes people say to me "WOW!" People ask me "Why? How?"

My LVAD makes people say to me "WOW!" People ask me "why? How?"

This blog has kept me busy in ways i never thought. Since my first post, back in February, I have been in touch with other LVAD recipients and their families, medical professionals ranging from Nurses to Surgeons... Paramedics, First Responders and Physicians and LVAD Coordinators. From around the world and across the United States, people are reaching out to each other in an effort to better our own lives and to better the lives of future LVAD recipients. My LVAD contacts now reach 12 Countries / 19 States and counting...

Over 4,000 people across the world have the LVAD implant.

3,000+ are located here in the states.

How am I receiving life with the LVAD?! I am 47 years old and had a devastating heart attack 7 months back and the LVAD implanted 6 months ago. Having this LVAD is winning the lottery for me... it has restored a better quality of life for me that i can not put a price on.

With that said, i DO find myself sacrificing alot, but i cant control these changes. What was ...was. However the positives do outnumber the negatives and thats all I care about.

I try NOT to look back and say WHY? Why me? Its normal to feel this way, but i do know its not healthy to look back and question while tormenting myself mentally. What is ...is.

So i choose to look Forward. At times its a slight struggle to keep positive, so thats when i start occupying my mind with other things... change gears. In a way i distract myself from feeling down. I postpone it with no intentions of ever redeeming it :-)

I always remind myself that the man who complained of no shoes, Stopped complaining when he saw the man with no feet...

No doubt... keeping happy is hard work and feeling down is easy... too easy... but not at all Productive! So i keep my mind busy being productive.

Besides... I have kids and grandsons to set an example for... in ways known and unknown to me... :-)

Should you have any questions, send them my way... maybe we can share some ideas...

...keep mentally tough with a poker-face and body strong with a game-face.

And the good saga continues...
email me at: LVADone@gmail.com

LVAD LUNCH AND LEARN

LVAD Lunch & Learn
For LVAD recipients and families to participate in an LVAD Support Group

Date: May 3rd, 2010

Time: 11:00am – 2:00pm

Lunch will be served

Location: Montefiore Medical Center
3415 Bainbridge Ave Bronx, New York
CHAM Conference Room

Guest Speakers:

Nicolette Keen,MS,RD,CDN
Paula Marcus M.D.
Jery Whitworth RN...

Lunch provided by Thoratec Corporation
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I often joke with my LVAD team at Columbia-Presbyterian/NYC that with my LVAD lithium batteries, I can charge a dead battery in a car. I am now convinced after meeting with 20 + LVAD recipients at one gathering, we all probably can jump-start a Jumbo Jet should the occasion arise. :-)


As I end a great day and change my power source from my lithium batteries to my PBU leads ...yes Margaret, I do sleep without batteries :-)... I can not help to think of how honored I feel to be given the podium to speak before 20+ LVAD recipients. It was also an opportunity to meet Simone Van Tull from the transplantcafe.com site, Dick Clark and Mr. Stowe, all who are LVAD recipients and I have gotten to know them (or of them) from online connections or the telephone. This conference also enabled me to exchange contact info with many new LVAD brothers and sisters :-)

Honored... me at the podium, another humbling experience.

I discussed my ideas on how to live a more comfortable life with the LVAD, such as using the 511Tactical Holster Shirt and my encounters with Thoratec; the company that developed the Heartmate 2 LVAD. In turn, I was asked many questions.

It was amazing to see a conference room populated by folks powered by an LVAD. On the agenda, LVAD medical professionals discussed with the LVAD group ways to address situations that an LVAD recipient may encounter, such as stress, depression, meditations and palliative decisions to name a few.


What was particularly interesting to me was the time taken to heed the words from the LVAD recipient’s caretakers and recognizing their tasks and responsibilities in assisting the LVAD recipient in their daily lives. With that said, I THANK my wife.

And the good saga continues...