Posts Tagged ‘ICD’

Electric HeartAs many of you have been reading my blog on a consistent basis, know that I have multiple devices implanted into the left side of my chest in order to keep my heart beating as best as possible until a donor heart becomes available for a transplant. I have a Bi-Valve Pacemaker (Medtronic), an ICD – Internal Cardio Defibrillator (Medtronic), and an LVAD – Left Ventricle Assist Device (Thoratec). Two things these devices all have in common, is that one, they are keeping me alive, and two they require and utilize electricity to perform their respective functions.

The ICD and Pacemaker are fully implanted in my body, and run on a battery pack that sits under my left pectoral muscle just under my collar bone. The LVAD needs external Lithium-ion batteries that can allow me freedom and mobility for 12 hours per pair of batteries, and I can run off wall current at home.  The home device that allows me to plug into the wall, only allows my 30 feet of freedom as I am on a cord plugged into a Power Base which then is plugged into the wall.

The LVAD has lead to many nights of sleeplessness and worry on those evenings when we have had inclement weather and I need to worry about power outages or whether or not I have to switch back to batteries to sleep that night. My friends affected by Hurricane Sandy had to truly find unique solutions to keep powered, from generators, to Fire and Ambulance Stations, to car battery converters and generous neighbors.

Marvel Comic's Thor (all rights reserved)

Marvel Comic’s Thor (all rights reserved)

Recently I have had issues with my ICD which has caused a rollercoaster of emotions, and experiences with electricity. The purpose of my ICD is to deliver a life-saving “therapeutic” dose of Electricity to my heart to knock it out of dangerously high heart beat situations.  Think of heart rates in the 280-300 beats per minutes equal to being very dangerous meaning impending unconsciousness or death (remember that Bruce Banner only needs his heart rate to exceed 200 beats per minutes to transform into the Hulk). So when my ICD gathers electricity and jolts my heart, it is working heroically like Thor and his Hammer.

Two weeks ago I suffered from a rapid heartbeat in the 280-300 bpm range and was shocked by my ICD six times with no effect on the beat, which my heart decided to correct on its own. This caused concern with my cardiology team to a point of identifying that the potential area where these abnormal evil arrhythmias (Think Electro – Spiderman’s Villain) were originating from an area of the heart where the two main leads weren’t successfully reaching it. It was decided to add a third lead coil to help create a

Marvel Comic's Electro (all rights reserved)

Marvel Comic’s Electro (all rights reserved)

broader field (leaving Electro less places to hide).  The surgery was a success, and my equipment was tested to make sure it would fire appropriately when need be to knock out the problem electrical rate.

So, now I have more metal and wires for my own Iron Man suit, but no armor or lasers (yet).

Many people also go through a lot of mental stress over being shocked. According to many thought leaders it can result in the same levels of PTSD (post traumatic stress disorder) where one shock is equivalent to being shot. Well I took six shots, so I guess there’s a bit more to work through there. All of your prayers and support mean everything to us, but with Faith, Family, Friends, and Mental Will we’ll get through this latest chapter.

 

 

Christopher Gabriel, his wife and family have been great friends of ours over the years, His talent for Acting and Storytelling are brought to bear perfectly in the “Theater of the Mind” known as broadcast radio.  I was honored to be asked about and to share my current phase of life with Heart Issues and a Left Ventricle Assist Device (LVAD). You can click HERE to listen to the interview. 

Here is a bit more about Christopher from his site:

Christopher Gabriel is the host of The Christopher Gabriel Program on AM 970 WDAY in Fargo, North Dakota and around the world online at WDAY.com. You can listen to him weekdays from 11 am to 2 pm CT. His program serves up a unique blend of current events, pop culture, sports and humor with guests and contributors from across the nation. As a writer and humorist, Christopher’s work has been published by the Chicago Sun-Times, Reuters, publications within Sun-Times Media, USA Volleyball and Team USA, the Official Website of the U.S. Olympic Committee. He’s also been a weekly columnist in Fargo’s daily newspaper, The Forum of Fargo-Moorhead

For the LVAD (Left Ventricle Assist Device) community, so many of us are spread all over, and in some areas there are only one or two people living with a LVAD, that unless we connect online, we are very isolated on information, support, and a simple community of people who are going through similar life experiences. There are several great pages on Facebook, but unless you are on Facebook and searching for these groups and pages, you might never connect to some wonderful people and information.  Most of these groups are closed to the general public, so information about LVADs stays in those groups, which is good for those of us seeking that privacy, but bad for the many other people who should know about the devices, and how these devices impact the daily lives of the people who have the device implanted and those who may be looking into these devices as a solution for themselves.

So a few of us have started encouraging the LVAD community to spread out online to other social media channels.  Many of us are blogging (or getting started blogging). Many of us are on Pinterest and YouTube, and quite a few of us are on Twitter.  We want to use all the potential communication tools out there, so we are formally launching LVAD Tweetchat on Sunday and Wednesday nights from 9pm-10pm EST.  What that means is that we are establishing an open chat on Twitter that can be followed or tracked by using the hashtag (keyword) #LVAD.

Twitter (www.twitter.com) is a social media platform that allows users to Tweet (post a thought, sentence, link, etc) in a mobile friendly format (140 characters or less) that can be accessed both through computers and mobile phones. Twitter is available on Mobile platforms for many devices including Apple, Android, and Blackberry.  usually you can download a mobile application (app) for your phone if you plan on using Twitter from your phone instead of your PC.

Here are the basic steps for creating an account on Twitter:

  1. Sign up for a free Twitter account and create your user name (if you are on many social media platforms, you probably want to use the same name across all the channels like LVADone, JasonsLVAD, MrChristopherL, etc.
  2. Develop a bio (160 characters) for your profile that inspires people to follow your Tweets.
  3. Make sure you include your website or blog link in the space provided on your profile.
  4. Upload an avatar (icon or photo) then set up a custom background with of your choice. You can use a free service like Picnik (or others) to create your background as well.

Here’s a few tips on how to engage in conversation:

  1. Do not use Twitter only to talk about work, etc. Definitely do some promotional tweets (announcements, links to your website or blog posts, etc.) sparingly in between other tweets such as: comments on other tweets; answers to questions; retweets (forwards) of others’ tweets; useful links; inspirational quotes or interesting trivia; or posing questions.
  2. As you only have 140 characters, brush up on a few of the texting shorthand words, characters, and phrases. For example 2=too,to,two – gr8=great, and so on.
  3. Use URL shorteners so that the links you tweet don’t take up your whole 140 characters.
  4. Monitor your account regularly, you may have new followers who may drop off if not included or responded to.

Dabble a bit to get used to the format.  It may seem a bit like a torrent of communication, but you will soon learn to filter the conversations you want to follow and join in.  The way to do a formal chat, is to save enough characters at the end of your tweet to allow you to add the hashtag (keyword) for the chat. In our case we will use #LVAD for our chat. The # sign indicates to the general world that you are discussing something that pertains to that keyword. On the Twitter website you can use the search bar at the top and type in that hashtag (keyword) in order to follow the conversation that is happening, whether or not you are following all of the people involved or not.

Our hopes for LVAD Tweetchat is to help us reach not only new members of our community of users of the devices, but to also connect with and provide resources and information to the caregivers, family, and friends of those with LVADs and to hopefully connect with and interact with the many great healthcare and research people involved with LVADs.  We know that many Nurses, Doctors, etc. have also been reaching out for more info as the LVAD becomes a more widely utilized device to aid patients looking to treat their heart conditions either as a bridge to transplant or for those that may be looking for treatment but are unable to receive a transplant, or are not seeking a transplant, as the LVAD is proving to be a tool to assist many patients to their life’s destination.

We will  (possibly) be hosting copies of the conversations over on the MyLVAD community website (www.mylvad.com) starting soon or we might build a blogsite so we can post a claendar of topics ahead of time to allow people to schedule their attendance in advance so you might be able to preview a few of the chats before joining them!

Please join us on Twitter on Sundays & Wednesdays from 9pm-10pm EST.  We’d love to have you participate!

Picard/Locutus from http://www.startrek.com

OK, so let’s get this out of the way; it’s no big secret that I am a Christian. No, you don’t have to be one also to read this blog. I will try to not be one of those that like to “vomit” their Faith on someone. I won’t try to convert you or brainwash you or cast the first stone. I just want you to know that I am blogging about my life and my experiences, and a huge part of my life and experiences is my Faith journey (if any of it can be helpful in your life, then awesome!). You may see a reference every once in a while to a piece of scripture, or I may post a song that has helped me get through the dark and rough parts of my heart health and life, but feel free to skip those parts, or click away to whatever else you are searching for on the web.

Cyborg Superman from DC Comics

That being said, a way to know I am moving further on the path of my Faith journey, is how I am being transformed as an individual (and growing hopefully). As I stated above, I just didn’t think it would be into a Cyborg!

With all of the equipment that I have had installed (Medtronic ICD and Bi-Valve Pacer & Thoratec Corporation’s Heartmate II plus all of the associated leads and wires) my chest cavity on the left side is mostly metal, silicon, porcelain and other “artificial materials”. My “organic” heart is still in there beating away, but when you listen to my chest, you can hear the “whirr” of the turbine controlling the blood flow through the heart. The Sci-fi geek side of me would say I am being “assimilated” into the Borg Collective, or that I now rely on technology to survive in life like DC Comic’s Cyborg Superman or Cyborg of the Teen Titans, or like Marvel’s Iron Man (all factors that help me relate to depending on all of this to live my life).

 

DC Comic's Cyborg of the Teen Titans

It has also put my life and outlook on life into perspective. I know I am not in control of my life. I live at the whim of a Power greater than my own. I can’t physically even support my body without relying on these devices to do so. I have a profound understanding of the phrase; “There, but for the Grace of God go I.”

I look at each day as a gift and enjoy seeing what new surprise I can find each day with my wife and children. My priorities are coming into alignment and I see (in High Definition) what issues are truly important, and what issues really merit no attention, stress, or worry any more. How is that coming in your life?

 

Oh…and I couldn’t leave out just one more geeky reference! – Transformers! Robots in Disguise!

I have been called “big-hearted” many times through my life.  Up until 2002 I took it as a compliment…a good thing. Then I caught a virus while travelling for business and wound up with an infection that settled into the enzymes in the fluid that surrounds my heart, causing the heart muscle tissue to inflame and enlarge.

I had always thought that big muscles were also a good thing.  Several coaches and trainers over the years tried to beat that fact into my head while working out in gyms for football, wrestling, and fitness in general.  What they never tell you, is that it is bad for your heart muscle to get so big!  Mine had swelled to 2x the normal size easily, and the fact that it had grown bigger than intended, it became an inefficient pumping machine, and became less capable of pumping the life-sustaining blood through my body. My EF (ejection fraction) rate – the amount of blood that is pumped per one beat or squeeze of the muscle, had dropped to 12%.

I (being a typical guy) thought that the weakness and fatigue were related to the pace I was keeping for work, and a remaining effect of the flu type virus.  It only concerned me when my body swelled up with edema (water weight) by over 40 pounds. When the heart is weaker, and the blood flow is slower, the body goes into preservation mode and starts shutting down other functions, like the liver and kidneys so I was not “evacuating” all the water. I ended up in the emergency room where I was diagnosed with non-ischemic cardiomyopathy (potentially viral related, but the docs were never 100% sure of that) also known as chronic or congestive heart failure.

It was controllable in the first few years strictly through medicines. Another lesson I had always learned from Coaches was that the best offense was a great defense, so I started assessing heart health to see what could be done.  Snoring and sleep apnea can greatly damage the heart by reducing/cutting off oxygen supply to the body. So after a sleep test was conducted, I began to use a bi-pap (constant air pressure flow device) and started to experience the best sleep I have ever had.  Now it is like second nature to use, and the children know it as “Daddy’s sleeping mask” (not as cool as Batman’s cowl, but I can live with it).

Another line of defense that happened in 2004 was to install an ICD (Implanted Cardio Defibrillator) as an “insurance policy”. 90% of people who suffer from heart failure (cardiomyopathy) die from not receiving a life saving shock from first responders, so I got to carry my own on board. I only felt the shock on the first night it was installed when they tested the device.  It feels as if you are hit in the chest by a baseball bat swung by a home-run hitter.

Things were progressing fine from there, until 2010.  I went through a bad streak of illness from November of 2010 to February of 2011.  I had a misdiagnosed infected gallbladder, that wasn’t removed until January of 2011.  In February, we found out that the infections from the gallbladder had spread and attacked my already weakened heart, once again.

My cardiologists recommended installing a pacemaker to help retrain the heart how to beat correctly and become a more efficient pump, and so it was added into the mix, and into me. The new device seemed to do the trick.  I had lost over one hundred pounds by May of 2011. The pacer was helping the heart to pump correctly, but we soon found out that the medicines were starting to become less effective.

The medicines were changed, increased, decreased, swapped, and monitored in order to get the heart failure back under control.  It wreaked havoc on my system.  My electrolytes were going crazy, especially my potassium levels, which triggered several instances of heart trouble, where I received shocks on six different occasions. Not a fun experience.

Finally, it was determined that I needed to go to the next level of heart health care and I was referred to the Cardiologists at the University of Minnesota to determine if I qualified to get a spot on the heart transplant list and begin the process of waiting for a donor heart to become available. I did qualify, and I am on the list, but I also needed to have a LVAD (left ventricular assist device) to help my heart pump the blood as I wait on the list. More on the LVAD in future posts.