Posts Tagged ‘University of Minnesota’

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

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!

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

I have been called “big-hearted” many times through my life.  Up until 2002 I took it as a compliment…a good thing. Then I caught a virus while travelling for business and wound up with an infection that settled into the enzymes in the fluid that surrounds my heart, causing the heart muscle tissue to inflame and enlarge.

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.