Archive for January, 2012

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!

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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!

 

I promised some updated photos, so here they are:

Supergirl @ 9

 

WonderTwins @ 3