Posts Tagged ‘LVAD Warriors’

Heartmate II LVAD plugged into power base unit cord

Heartmate II LVAD plugged into power base unit cord

I guess after having an LVAD for a almost a year and a half, I’ve become someone that people will ask for advice or information, especially if they are considering an LVAD or have been told they may need one, or have just had one implanted and are looking for guidance on something. I am honored if I can ever be of help as there is no such thing as a “stupid question” with an LVAD. There are still less than 20,000 of us worldwide that even have this device, so we are definitely in a unique group.

Recently, I have been hearing from both new and experienced LVADers, about the emotions, anxieties, and issues a lot of us experience at a time of the day where we have to “Plug In.”

This term refers to that time of the day when an LVADer must choose to switch from being battery powered (mobile and free to move around) to plugging into our wall-powered power base units (a cord that is basically less than 30′ long). I spoke about this LVAD leash in an earlier post. When we came home from the hospital with this equipment we had to do a lot of rearranging in our bedroom to allow me to be able to have the equipment close enough to the bed (we typically plug in before going to sleep). The cord is long enough to allow me to visit the bathroom. It is also long enough for me to reach the threshold of our children’s room, but not long enough to go into their room if they cry out. I have to encourage them to come to me, or have my wife tend to their needs. It also might be barely long enough if I lean a bit to reach a hall pantry where the occasional midnight snack can be found (salt-free of course).

Many people hate this cord. They hate giving up their freedom. It is something that depresses them, or causes them anxiety right at a time they are supposed to be getting ready for bed and settling down.

I have come to terms with this cord and actually have a different viewpoint to share, in hopes it can help these others over this issue of plugging in.

I personally have come to even look forward to this time of the evening . Why you ask? I look forward to this time of the day for several reasons. I know that if I am plugged in, then everyone is home that is supposed to be, and if not in their beds yet, they are safely in the house. I know that the doors are locked and  the house has been secured for the evening, I know that all of the medications I will need as well as the water to take them with is ready. II know that I have checked the weather alerts to make sure that there is no impending weather threat that would threaten the power supply (meaning I would have to jump back on batteries). Basically, it means that all is as it should be in that small area of control I can control in my life, and it is easier for me to rest. Hopefully this alternate viewpoint helps you look at the LVAD leash in a new light, and can solve some of the issues around plugging in.

Now if I can only figure out how to solve LVADinsomnia!

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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!

Reprinted with the permission of Thoratec Corporation

On October 7th 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