Archive for the ‘Daily Life’ Category

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:

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

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

 

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.

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?