Posts Tagged ‘Thoratec Corporation’

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.

 

 

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I’m coming up on my 1 year anniversary since my Left Ventricular Assist Device (LVAD) was implanted last October 7th, 2011. It has brought to mind the many seasons I have gone through in just one year of living with this amazing piece of technology that has all but saved my life. Last year, I all but missed this transition of the end of summer to fall, which here in Minnesota is actually a really spectacular thing.

We are blessed to have four distinct seasons of weather during the year.  True, we have a devastatingly cold winter, but that is the price we pay. Fall happens to be one of my favorite seasons of all in Minnesota. It is harvest time for corn, pumpkins, and other crops. The deciduous trees are in an explosion of colors that hit every spectrum of yellow, orange, and red. The weather is mild and not humid, and the nights are cool enough to entice a warm fire in an outdoor fire pit.

Life seems to mirror nature to a degree that we all have various seasons we travel in and out of as well.

The LVAD implant surgery was a long season for me. I was in the hospital for 40 days and nights trying to get healthy enough just to survive the surgery, and to become strong enough to return home after the implantation. I spent our 11th year wedding anniversary in the hospital, and was also in the hospital when my mother passed away. After the implantation on October 7th, my sole goal was to be home in time to have our 3 year old twins and 9 year old daughter enjoy Trick-or-Treating on Halloween. I made it home three days before Halloween to realize this goal.

The second season of LVAD was recovering from the surgery itself. They don’t really tell you, nor can they ever really prepare you for how your body will react to a major surgery, which includes your chest being cracked open for the implementation of the device. It took another four months after returning home for me to start feeling back to “normal” (as normal as I can be with this device). I went through several home visits with Physical, Occupational, and Cardiac rehab nurses in order to get to where I am today (working full time and chasing the kids around).

The third season of living with an LVAD seems to be where I am today – trying to regain as much of the activities of life in spite of the limitations on me based on the device. Once you get used to the basics of the device (which truly are a lot, I don’t want to minimize or trivialize the things I and other LVAD patients live with), you can start testing and pushing the boundaries. Please realize though that going an inch over the line seems pretty risky in boundary pushing for me!

This is an interesting and challenging season for me in many ways. On one hand, I feel better than I have in years, while on the other hand, I have a heart that is in end stage failure and can’t support my vital functions without the support that the LVAD provides. Some parts of my physical body may be as close to being dead material as they can be, yet I have never felt more alive than at any other time in my life.

There is an overarching season that also plays into this. I am on the heart transplant list waiting to be blessed with the gift of a heart from a donor. Because of my size, age, gender, tissue, and blood type (O+), I have been told that this season of waiting can be up to two or more years. It is something I cannot affect or control, so I must live in this season and cope with the facets.

The best thing about going through these seasons is that as the sun continues to rise and set, time passes, and seasons do change.  It is important that I can mark their changing, as it reveals to me that I am still moving forward and not at a complete standstill, placing a life (that is too precious and valuable to waste) on hold with the expectation that It will be a perfect world with a new heart.

What seasons are you going through?

 

This is incredibly cool! Thoratec Corporation, which makes the Heartmate II device that I currently have implanted announced that they have now hit the 10,000 milestone of lives forever changed through the implantation of these devices.  Many of my online fellow LVAD-ers are featured in this video (Shout out to @LVADone & @VEGASLVAD !!). It is definitely a tight group of us that are pioneering the path for these devices which have given each one of us the ability to regain the lives we used to live (mostly – there’s a new normal for all of us!)  I for one am very thankful and glad to be part of such a community of such supportive and giving people! Enjoy this brief Video:

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!

Heartly the LVAD Bear

Back in September of 2011 when I first found out that I was going to need a LVAD implanted to keep my heart going until a donor heart was found, my wife and I barely understood what exactly this device would entail, much less how we were going to explain it to our children (9-year-old daughter & 3-year-old Boy-Girl Twins).  I could barely find info on the device for myself, and information on how to prepare younger children? There was nothing out there (believed me I searched and searched).

The 9-year-old “got it” much better than we thought she would (although she is brilliant, yes I am biased). She actually watched the informational DVD from Thoratec (the manufacturer) and looked through the training materials.  She quickly decided she would have a new nickname for me – henceforth I would be known as BPD (Battery Powered Dad). During my stay in the hospital, she absorbed all she could like a sponge.  She learned how to change batteries in case of low power or emergency and she learned how to and helps with dressing changes (yes she gloves up and masks up to ensure the sterile field). Personally I think we are blessed by this “smartie” and I told her she should consider Cardiology as her future as she could make a mint just from our family and extended family! 😉

The 3-year-olds understand to a degree that Daddy has “batteries” to wear each day and a “cord” at night.  They equate my driveline site as being an “owie” as it is covered with a “bandaid” for the “owie.” They know that Daddy always carries his bag (the back-up bag with extra batteries and controller) at all times, and the 3-year-old daughter has thrown the strap over her shoulder to carry the bag and declared to her big sister; “I’m helping Daddy.” My little 3-year-old boy comes into our room in the morning and requests of me to “get on your batteries and come make waffles.”

They are learning to be careful around the cords, controllers, and driveline.  Mostly they are just happy to have Daddy home, out of the hospital, and able to play with them again (I must say that it is a major source of happiness for me as well).

One useful tool while I was getting the LVAD happened in the form of a Teddy Bear.  My wife took our children into a local Build-a-Bear Workshop (A company I used to work for, and opened their first store in MN) and they made a new bear for Daddy.  His name is “Heartly.” He is a “Champ” Bear (one of the bear’s that is associated with causes that Build-a-Bear donates to) and he has a “stitched-on” heart on the front (to symbolize that Daddy will get a heart stitched in) where if you press it, you can listen to the heart beat.  He is also a “Battery Powered” Bear as he has a fishing vest to wear which has 2 Double A batteries in each of the pockets (an addition the 9-year-old thought of) just like Daddy packs his batteries into pockets of clothes.

In the end, if you are open with your children, and explain to them on terms they understand, I believe you will have success in aiding them to understand this phase of life. Now we just need to get someone to work on the “Louie the LVAD” Cartoons!

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!