Archive for the ‘LVAD tips & resources’ Category

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!

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:

 

Gout under the microscope - needles of urate crystals! OUCH!

Gout is one of the oldest diseases in the medical literature; it has been around since the first recorded case in the time of the ancient Greeks. I always thought that it was one of those “old people” diseases often depicted in comedic sketches or on Saturday Night Live. I clearly didn’t know that Gout was truly not a laughing matter, but a debilitating condition that can cause immense pain and discomfort.

It is now something I suffer from occasionally as a side effect of the diuretics I take for my heart, and the first attack came in the hospital days after the LVAD was implanted. More than likely a result of the rapid filtration process I had to undergo to get rid of the 40+ pounds of edema from my body prior to the LVAD being implanted.

Gout is inflammation caused by monosodium urate monohydrate (MSU) crystals. Urate initially precipitates in the form of needlelike crystals. Under a microscope, the light-retarding (phase-shifting) characteristics of urate crystals allow them to be recognized by polarizing microscopy (as shown in the photo). That is also what it feels like in the area being attacked. In my case it typically starts in the joint of the first “knuckle” of the big toe on my left foot. It then spreads to the top of my foot and up to the ankle. My whole leg usually then becomes sore as I try to compensate for the foot pain and limp or favor my right leg. It helps to put my foot up, but only if immobilized. If I shift my foot in my sleep the pain will wake me up.

If Gout is left untreated, the crystals can actually destroy the joints where they have infiltrated. Not a fun thought when I have other issues to worry about! I need to officially apologize to anyone that I chided as being a “baby” over plantar fasciitis I now understand your pain!

There are several treatments for Gout. Most being of the steroidal variety and a nifty little pill called Cochisine that does wonders in clearing attacks up for me. Natural options are to make sure you are hydrating properly and urinating regularly to excrete the acids. Also, many foods containing purines are said to increase the chance of flare-ups and that a diet that reduces purines can aid in fending off attacks. Some of the high-purine foods to avoid are: beer, yeast, sardines, herring, organ meats (livers, kidneys, sweetbreads, legumes, meat extracts (consommés & gravies), asparagus, mushrooms, cauliflower, and spinach. As I always like to say in dieting: with all things – moderation. Have you had problems with gout? Please share below.

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!

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!