The Greatest Hero I Will Never Meet

I have had many heroes and mentors in my life growing up. From fantasy and books; Batman, Superman, Wolverine and the X-Men, Captain Kirk, Luke Skywalker, and on and on. There were heroes from life; Walt Disney, Teachers, Family Members, Co-Workers, and friends. Heroes who inspire me, affected me, motivated and challenged me. I know them fairly well, either through a personal relationship or reading and studying about those heroes.

Which makes the Hero I have to add to the top of my list a bit of an anomaly. I have never met this person, but I have as personal of a physical connection to this person as a person could possibly have. I don’t know anything about this Hero, not even his/her name. In fact I may never know, even though I hope to find out some day. This new hero is my heart donor.

On May 2, 2014, my journey of living with heart failure after a virus first settled into my heart 12 years before that, has entered a new phase as I was blessed with the gift of a new heart.

I don’t have any information about my donor. I will be able to write a letter to my donor’s family and hope that they would want contact and then share some info so I may better know this great person. In the U.S., the organ donation process is completely anonymous and protected. Until then, I don’t know if it was male, female, what age, where they lived, what they did, or anything else.

Here is what I do know.

I know this person is selfless and generous. They cared enough to pass on a piece of themselves to afford me to continue and improve my life. They chose to do something that hopefully provides a positive out of any negatives that their passing has caused their family.

For that simple fact, this person will be the greatest hero I may never meet.

You too can become a hero to someone just by becoming an organ donor. You can sign up any time you renew your driver’s license, or online sites such as http://www.donatelife.com.

 

 

 

 

 

Plugging In…

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!

My Love-Hate Relationship with Electricity

As 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)

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)

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.

 

 

Seasons of Life

I’m coming up on my 1 year anniversary since my Left Ventricular Assist Device (LVAD) was implanted last October 7^th, 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 11^th year wedding anniversary in the hospital, and was also in the hospital when my mother passed away. After the implantation on October 7^th, 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?

 

10,000 Heartmate II LVADS Have Now Been Implanted

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:

The Waiting Game (Life on the Transplant Waiting List)

Back in October of 2011, when I was in the hospital, I qualified to get on the waiting list to be blessed with the gift of a donor heart when one became available.  There are so many contributing factors that can cause you to not be a candidate for a spot on the list.  They take into consideration your entire health history (you and your family’s), behavior (drugs, smoking, risky sexual activity, and alcohol use), weight (& BMI), living conditions, a psychiatric evaluation, and many more contributing factors. It is a pretty important gift to give someone, so they are thorough in the qualification process.

Once I had my Left Ventricular Assist Device (LVAD) implanted, I had to go on “hold” status rather than “active” to allow my chest to heal from the chest crack surgery that allowed them to implant the LVAD. I didn’t go back on “active” status until December of 2011.

The list has a few categories, but most important ones are 1A & 1B.  Status 1A usually refers to a patient that has an emergency need for a heart and is usually currently hospitalized while waiting for such a heart. Status 1B refers to those with just as much need, although their health allows them to continue to pursue living their lives outside of the hospital.  I am officially on the list as Status 1B.

There are almost as many conditions for a heart to be matched to someone once a donor heart is available such as; blood type, tissue match, size, health of the organ, etc.  So it is typically quite the wait for a perfect match.  I was told that here in the Midwest (Region 7 of the UNOS map), it could take an average of 2 years, based on my blood type alone (O+). So mentally, my wife and I have conditioned ourselves that it would be a two year process.

There is also something called “Prime Time” for someone with an LVAD. It is a period where for 30 days you can be elevated to the top of the list (for your organ requirements) for 30 days.  It is usually a period where there is determined to be no one else with your same needs that is an emergency 1A, as they would always get priority. So, on Easter Sunday, we received the call that I would be moved into the “Prime Time” category and if a heart in my requirements comes in, and there is no emergency need for it elsewhere, I will get “The Call” to come in for a transplant.

This is exciting and scary at the same time.  Our family has started focusing on the fact that this may happen sooner than later, and after a few days of shock, waiting for this to sink in, my bags are packed to go to the hospital.  We are also very much focused on the gift that a donor will be giving to me, and pray for that donor and their family, as they will undergo the pain of losing a loved one, even though a gift may help another live. I will be setting up a Caring Bridge page as well to update people when that happens.  So if I disappear from here, Twitter, and Facebook for a few days, it might mean that I got “The Call”.

Prayers are always welcomed, and it would be great if you chose to be a donor and gift someone else in the tragic event that something happens to you.  In the Midwest you can click here: www.donatelifemn.org

My Interview on the Christopher Gabriel Show on WDAY Radio in Fargo, ND

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

OY! What a Pain in my Foot!

 

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.

Happy Birthday Mom! I miss you!

Today was Mom’s birthday.  It is the first one that has passed since she did last year.  I wanted to do something in my own way to honor her on this day. So I thought I would post the transcript of the eulogy that I gave at her memorial celebration. This is for Mom.

On September 20th (2011) I got the call that my Mom had passed of a sudden heart attack on the way home from her dialysis appointment that day. I wanted to rush to the hospital as they performed heroic measures to see if she could be brought back.

The problem was that I myself was in the hospital at the U of MN awaiting a much-needed heart surgery to keep myself alive and healthy while awaiting a transplant.  My Cardio Team was willing to put everything on hold and transport me via ambulance to the hospital where she was brought. After testing showed that the only thing that was keeping Mom’s heart going was the machinery, I knew her soul had already departed to a sweeter place. I opted to listen to my Mother and honor a promise I made to her to make myself, my heart, and my health a priority so I wouldn’t end up on the same health path that she was on. I was to do everything possible to get healthy to be able to continue to live and to be there for my wife and children.  It was my responsibility.

She made me make that promise just weeks before I entered the U of MN’s Heart Transplant Program, during one of the too many and too long hospital stays she had gone through during the year.

Responsiblity. It wasn’t the first time this value was impressed upon and instilled in me.  At 8 years old, I was given the responsibility to cook dinner for the family one night a week. She gave me a cookbook and taught me how to follow recipes.  At 9 years old, Mom had to go back to work to help support the family. She worked overnights, and it was my responsibility to wake, change, and feed my 3-year-old brother and myself, and deliver my brother across the street to a sitter all before carpool came to pick me up for school.

At the time I never realized all of the skills that I was learning during those years that would make me a good father for my own children – changing diapers, cooking, laundry, ironing, and on and on. The best lesson I learned from Mom though, was how to love.

Mom had unconditional love for her three sons (believe me, each one of us tested it at times) and her family, for her grandchildren, and for the extended groups of friends we brought into the house.  We watched her raise her grandchildren just as if they were one of her own.  We saw her treat our friends as just more of her own children. It was proof that love was not to be discriminatory and was to be freely given to those we care about. An important lesson to enable us to also give and experience love in our own relationships.

We moved a lot growing up. Mom always seemed to meet and find friends easily. Something that I think she did to encourage us to overcome our fears of the new places, and make our own new friends in each situation.

Mom was able to instill such life skills and lessons with us because of what she learned and experienced while growing up.  In a house of 6 kids you learned responsibility at an early age. Mom had a job since she was 14 years old. She worked in the Canteen at the VA hospital in Minneapolis while going to school, and became a nurse. As a nurse her care and concern for her patients was also an example of the great love and care she gave. When she left nursing to work for Eli Lily as a Quality Assurance Inspector of the first mass manufactured external heart defibrillators she was a stickler who ensured that every device would perform as designed. Little did she know that 30 years later a defibrillator as small as a deck of cards would keep her eldest son (me) alive. She showed the same tenacity, care, and advocacy for her patients as a case manager for Blue Cross Blue Shield where she championed programs for patients with Hemophilia. She felt she had a very rewarding career even though complications of diabetes brought her career to an end before she would have wished it to.

Growing up to become a young man, father, and husband, it was great to have Mom as our number one cheerleader, advisor, someone who listened to all of our dreams and our fears and offer just the right amount of advice (and yes, sometimes when we didn’t want to hear it).

As we approach Christmas, I feel that Mom is still close by. It was hands down her favorite Holiday. She loved the decorating, the trees, and the lights. She would often just wind down each night of the season sitting in a dark room except for the tree all aglow. She loved holding onto traditions and reminded us to carry them on to our own children, and that is was also very important for us to create and add in our own traditions as well.

This Season is about giving.  Giving of love, of gifts, of one’s self. So as we approach the day that the Lord gave us the ultimate gift of His Son, Jesus. I am consoled and rejoice that although Mom stands now with the Lord in heaven, she is free of the pain and the complications of her illnesses that racked her body.  She will be with us always in our hearts, especially at Christmas, a Holiday where the example of love we learned from her – A love that came from giving and sacrifices, given unconditionally, truly embodies the gift of love that is the Christmas Spirit. We miss you Mom and love you dearly.

Join Us on Twitter for LVAD Tweetchat

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!