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 be hosting copies of the conversations over on the MyLVAD community website (www.mylvad.com) starting soon, 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!

100 Days of LVAD life

Yesterday marked 100 days of life with a LVAD.  Boy has time flown.  It seems like I just came home from the hospital weeks ago, but I am thrilled with the progress so far and this milestone.  So what has having a LVAD meant to me for the last 100 days? Well here is a quick list:

• It has been 100 days of time, moments, memories, and laughter spent that I have been blessed with to spend with my wife and children
• 100 days of breathing easier and feeling more energy than I have in over a year
• 100 days of meeting new people – from support group members to online friends that are quickly becoming an extended family due to the common LVAD bond we share
• 100 days of reclaimed life – with new energy has come the  reclaiming some of the activities and endeavors that I had shelved due to my health
• It has been 100 days of experiencing the miracles both big and small that God has created in this beautiful world of sunsets, snowflakes, crisp mornings, full moons, and starry nights – all seemingly more beautiful now than before
• It has been 100 days of learning, adjustment, research, waiting, and preparing for the day I will receive the great gift of a donated heart

Most of all it has been 100 days of formation, introspection, and action to live up to this great gift of extended life that I have no intention of wasting.  What milestones are you experiencing in your life? Do you celebrate them or do you dread them? If you are further along on the LVAD path, how do you feel about the journey?  What is your advice for those of us travelling the path a bit further behind you?  What methods have you developed to deal with the waiting?  Feel free to comment below.

My LVAD leash

Part of my new normal of being powered by electricity involves battery packs during the day to be portable, but each night, I eventually switch over to wall power which involves a 30 foot cord.  This cord allows me some freedom at night (about 30 feet of it). The wall unit is in our bedroom, and the cord allows me to go into the bathroom or over to the closets to grab clothes when I need to. It stops short of letting me into the hall or into our children’s room.

Although it is much-needed and wonderful technology, this aspect of the LVAD leash has brought some frustrations as well. I can’t rush to the children’s room if anyone cries out at night, I can’t search the house if I hear a suspicious noise, and I can’t raid the fridge for a midnight snack!

I need to come to terms with it.

I need to make sure I have everything I need at hand before switching off of battery power and onto the wall. It is taking some adjustment just like everything else in this LVAD life, but I am sure I can make it through. I may grouse and grumble a bit, but it truly isn’t such a bad price to pay for all of the wonderful aspects of the LVAD that have made my life so much better now than before the implant when I was so sick and was just trying to muddle through.

It is another physical representation that I am NOT the One in control of my life, and I thank the One that is in control for each and every day!

How are you doing with your LVAD leash?

All the answers...

If you know me personally, you know how hard that declaration is for me. I almost always have the answer (or at least I claim to).  Ever since the first grade I was quick to raise my hand and deliver an answer, even if it was the wrong one.  I would get all red in the face and make little fists.  My Teacher then spoke with my parents and asked them to work with me to understand it is “ok” to make mistakes and not always have the answer. My parents did this, and showed me instances where they had made mistakes (I remember my Mom had melted a rug in the dryer). It helped a bit, but I think I still struggle with it being “ok” not having the answer and having to rely on others and actually learn about the answers.

For someone who thirsted for knowledge, I didn’t much care for Science and Biology (two subjects I am glad my daughter loves in school). So imagine how much I struggle with wrapping my head around all of this science and technology that I am now forced to rely upon each and every day just to survive?! I don’t have the answers at all. I have found though, that I can trust qualified people who do know a whole lot more than I’ll ever know.  My Wonderful Wife included.

I am truly grateful that we live in this time of social technologies and robust search tools.  I have connected with peers, caregivers, and medical professionals on sites like Twitter, Facebook, YouTube, and Linkedin. I am also grateful for my brilliant team of Doctors here in the Twin Cities that are (thankfully) a million times smarter about my heart and physiology than I am.  I just hope they realize the peppering of questions I deliver, and constant communications is because I am truly trying to learn and expand my knowledge into areas I previously neglected, or barely applied myself to.  I also want to say “Thank You” to all of them, and the community of LVAD’ers online that are constantly sharing knowledge, information, tips, advice, support, and jokes too! This would be a much larger struggle and challenge without all of you!

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!

511 Tactical Holster Shirt

One of the first questions/challenges facing LVAD implant recipients, is how to comfortably carry around the battery packs and controller unit during the day, to allow as much mobility as possible. I have been told of several solutions, from Photographer/Hunter/Fishing vests with more than enough pockets to store all of the equipment and wallets, medicines, etc. The vests are fine in casual situations, but I have had more success with what is called a “Holster Shirt.”

These are shirts with built in holsters (primarily intended for use by law enforcement agents and people with carry and conceal permits) which would normally hold a firearm and ammunition.The holsters are actually the perfect size to carry our LVAD batteries. The material – a spandex-lycra blend also offers support and protection to the chest area (an area typically tender and weaker after an open chest procedure) which is very comforting to me.  They come in black and white and I now have a few of these shirts in rotation as an everyday shirt or undershirt.  It also looks very nice under a sweater or collared dress shirt if you need to dress more professionally.

The shirts I found are from www.511tactical.com, and are sold online on sites for sporting, hunting, and fishing stores: www.cabelas.com. You can also Google “Tactical Shirts” or “Holster Shirts”.  Also, a very valuable tip I learned from a fellow LVAD Warrior/Brother –  M. Josh Morris @LVADone is to put the batteries in the holsters “cap side” down to prevent them from sliding out and dropping. A valuable tip probably for both firearms and LVAD Batteries!

Geared up!

For an even dressier solution (although I don’t own one yet) is a Bosco Vest (www.boscolvadvest.com) which is a custom made vest from the wife & caregiver of another fellow LVAD’er. These vests are so snazzy even former VP Dick Cheney was sporting one.  The vest has several custom packets and velcro straps to keep drivelines and battery wires from dangling loose.

What I don’t have any tips for, and will need the Ladies’ to help with, are what solutions are out there for women with LVAD’s? I believe there are also holster shirts as well, but I don’t know of the other clothing options. Please, please, please leave comments below and I will turn them into a future post! Guys are also welcome to offer other clothing solutions as well.  Thanks!

Picard/Locutus from 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!

Reprinted with the permission of Thoratec Corporation

On October 7^th of 2011, I joined a quickly growing segment of incredible people that are living with an LVAD (Left Ventricular Assist Device). It is a tight knit and extremely supportive community that has quickly made friends and family of complete strangers. Mine is the HeartMate II built by the Thoratec Corporation (www.thoratec.com). Here is a bit about the LVAD directly from their site:

The HeartMate II is one of the most advanced devices to treat advanced heart failure available today. The first device of its kind to be approved by the U.S. Food and Drug Administration (FDA) for advanced heart failure, the HeartMate II has already provided thousands of people with new hope and improved health, allowing them to reclaim their lives.

The HeartMate II is a heart pump called an LVAD (short for Left Ventricular Assist Device). An LVAD is designed to help the left side of your heart pump the blood your body needs. It does not replace your heart. In most cases with a HeartMate II* LVAD, advanced heart failure patients can experience a dramatic improvement in their heart failure symptoms. With oxygen-rich blood flowing throughout the body, most people say they feel better and have more energy. Most HeartMate II patients also experience an improved quality of life. They can once again enjoy their favorite activities, such as travel, golf, visiting family members, dancing and playing an instrument.

From their link:

http://www.thoratec.com/patients-caregivers/about-heartmateII.aspx

Here is also more really good information about it:

http://www.thoratec.com/downloads/LVAD-FactSheet-B100-0611-FINAL-update-92211.pdf

Probably the highest profile of someone with an LVAD, someone that has been covered the most by the media, is Former Vice President Dick Cheney. No matter what you may think about his politics and service, he has really started to shed light on a medical device that is dramatically improving the lives of people with Congestive Heart Failure, like me.

Due to the fact that this is fairly cutting edge medical therapy, most of the information that is available for people going through this, is still being written, and most of it is being written by the LVAD community of people living with the devices and their caregivers.

Here are some resources you should check into if you are looking for advice, information, or support for yourself or someone you know, that may be headed on this path:

Community Pages:

www.mylvad.com

Facebook Groups – Search for:

LVAD Friends

LVAD Warriors

LVAD Nation

There will be a weekly “Tweetchat” on www.twitter.com Wednesday & Sunday nights.  You can follow it by searching the following keyword: #LVAD

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.