Huge Heart Blog

Huge Heart 2007

jon.kirk@hugeheart.org (Jonathan Kirk) — Mon, 08 Jan 2007 22:03:00 +0000

In 2007, I plan to do more research for my condition and build on the information that I already have on Huge Heart. I would like to write a section on defibrillators and eventually start a forum for visitors to ask questions. If someone has a suggestion please e-mail me, obviously I would like to make the most user-friendly website that I can.

My last post was almost two months ago--I just took a break to fully recover from the surgery and deal with the holidays. I wish I had blogged during my recovery period, however, the recovery was just resting my left arm so the swelling would go down in my chest--there really wasn't much to tell.

I feel 100% at this point, I had a 2-month restriction on what I could lift and how I could move my arm but that is officially over tomorrow.

My Grandfather always told me that his defibrillator was the best thing he had ever done for his health, I agree. It obviously has not saved my life yet, but I am confident based on the statistics that it will someday--if I need it. Just knowing that you have a small emergency room in your chest gives you a great deal of comfort with your heart condition. Another great thing is that it's small, you cannot even tell its inside your chest--I forget its there. Also, these devices are going to be even more advanced in years to come--they are supposed to go wireless.

Just remember that there is always something you can do to better yourself and your health. If you have a heart condition and you are looking at getting a defibrillator, do not hesitate to get it even if you don't need the device like me--it was a great investment. It can only help.

A Successful Surgery!

jon.kirk@hugeheart.org (Jonathan Kirk) — Sat, 11 Nov 2006 18:35:00 +0000

I am glad to be out of the hospital and that the surgery is finally over.

The surgery took about an hour and a half--the doctor implanted the ICD and tested it during the timespan. He pushed my heart rate up to 200 bpms and the device kicked right in. The normal position of the device is in the hollow of the left shoulder, the doctor planted my device closer to the middle of my chest--so I can play golf and have more mobility with my shoulder.

After the procedure I felt awful, I was groggy from the anasthetic and my chest was very swollen where the incision and the defibrillator are--which I expected. I didn't think the anasthetic would wear off so quickly after the surgery, I thought I would be crackin jokes afterward. Not the case. I had monitored bed rest for 24 hours and antibiotics by IV. They gave me some Tylenol with Codine for the pain and that worked real well.

There are restrictions that result from the surgery such as reaching over my head with my left arm for two weeks and lifting anything over 5 lbs. for two months.

There is a selection of items that you can't use, these are covered on the medtronic website, Medtronic makes my defibrillator. The most notable electronic devices that can cause an interference are cellphones--you can use them all you want but you have to remember to keep them atleast 6 inches away from your device. Also theft detection systems in stores and metal detectors in airports can be set off by the casing of your device--medtronic gives you an ICD identification card to keep with you that you can show security or store employees (most stores and all airports are aware of the devices). Do not let airport security use the handheld screening wand--that can interfere as well.

I found these websites and articles helpful during my transition.
Wikipedia
Medtronic
American Heart Association
AHA Journals
Medic Alert
American Medical ID
Zaplife

If anyone has any questions, please email me.

The Night Before My ICD Impant

jon.kirk@hugeheart.org (Jonathan Kirk) — Thu, 09 Nov 2006 01:56:00 +0000

Today was a normal day, I did not really think too much about my procedure. I guess you can say I am anxious to get it over with. I am more nervous about how I will feel with the device in my shoulder and how I can't overexert my arm for a few days after the procedure. If I move my left arm too much it could knock a wire out and then the doctors have to do it over again, so it is important to keep my arm stable.

I am going to keep this entry short and sweet because there is no point in going on an on about how I feel. I will go more in-depth about my surgery after it--makes it more beneficial for others that way.

Besides I dont think I am going to know how I actually feel about the procedure until its time.

I know that I have a great doctor and that this is a good thing for me. I just need to keep reminding myself how fortuante I am for getting the opportunity to receive an ICD.

A True Hero

jon.kirk@hugeheart.org (Jonathan Kirk) — Wed, 01 Nov 2006 23:57:00 +0000

My last entry was about two weeks ago and it was written with the assumption that I would have my ICD implanted in my chest within two weeks--my procedure was delayed due to my grandfather's passing and I will now have my procedure late next week.

Last week was a very hard week for me, I lost someone that I was very close to. This entry is going to be dedicated to my grandfather, William L. Blom. He was 76 years old and had respiratory failure caused by lung cancer.

My grandfather was an awesome role model and friend for me and everyone else he ever met. He was truly a hero--he grew up in Troy, NY and his father was a butcher and mother was a housefwife. They did not have a lot of money but his parents always instilled how important a good education was.

He loved baseball, when he was growing up he would play baseball and according to my uncle (my grandfather's brother) he would either hit a homerun or nothing at all. He always saved his allowance money, went to school, and when he was old enough he worked. He always loved food, he was a butcher throughout high school and college.

In his college years he would work during the day and go to school at night--he graduated from Siena College with a bachelor's and master's degree in statistics. After accomplishing his bachelor's degree and his first master's degree he met my grandmother and they started a family with the little money they had; he knew he had to do more for his family. So, shortly after the birth of my mother (their first child) they would move to Ann Arbor, Michigan where my grandfather pursued his second masters degree in public health administration at the University of Michigan.

While he pursued his second master's degree he would move up the organizational ladder to become his agency's first director, as director of research where he utilized all of his degrees and his experiences.

He was very successful in his career and education, however he was not just driven to get all the recognition or all the money in the world. His motivation was his family, all he wanted was for his family to be happy and to live comfortably. He was always thinking about other people.

While I was at the wake, a woman approached me and told me how amazing my grandfather was. He had a way of motivating people and making them feel good about themselves. She had told me how he helped her through her career and really instilled confidence in her to move on and move up.

He was very successful as you can see, however his health would become a burden the older he became. He retired in the early nineties and became a full-time grandfather--this is when I spent the most time with him. He would pick me up from school and we would go to car dealerships and look at cars, go get some food--he loved Hot Dog Charlie's, and we would watch the Yankees play. He loved golf and loved the Yankees.

He was a great inspriration to me throughout school and anything else I pursued; he always told me to give it my all and that anything is possible if you have the right attitude.

He was diabetic and he also had dilated cardiomyopathy. Both really complicated things for him the older he became. About seven years ago he received a defibrillator, the same doctor that is implanting mine had implanted his. After I found out that I had the dilated cardiomyopathy he would calm me down and let me and everyone know I would be okay. His words led me to the fortunate feeling I have about my condition today.

His heart had made things somewhat complicated, however at the end of his life his heart was one of the few organs that was not failing him due to the defibrillator and his medications.

He is always here with me and my family and I know he wanted to be here for my procedure. A few days before he had passed he asked my mother if the doctor's were still on board with the procedure and she said yes. He followed with "He is in good hands, he will be fine." I know my grandfather will be watching over me on that day.

Huge Heart Blog/ICD Implant

jon.kirk@hugeheart.org (Jonathan Kirk) — Sat, 14 Oct 2006 19:00:00 +0000

I have decided to start this blog to allow patients and visitors to maximize their experience while searching for answers on HugeHeart.org. I felt that writing a blog of my experiences and my thoughts about living with Cardiomyopathy would give outstanding insight to a world that is not that familiar or experienced with this disease. It is not only good to provide such valuable insight but it is very therapeutic to write about it. I originally wanted to start this blog when the website was completed-until I realized that this website will never feel complete and to have a successful health website there are going to be modifications.

In two weeks I am going to get my defibrillator implanted in my left shoulder-this is a major change in my life-I believe that blogging about such an experience can help me and someone else cope with receiving an ICD and living with this disease. Am I nervous? Yes. How nervous? Not very. I will reassure myself and everyone else that this procedure is very common nowadays—not as common as getting your tonsils taken out obviously, but the doctors that implant ICD's are specialists in this field. I am nervous because I have never had a serious surgery before.

Overall, the procedure is only going to take a half an hour and a 1 night stay at the hospital. For the following weeks I will have to take it easy to build scar tissue to secure the device in my chest. There is a small bump and a scar that come with the operation- I have been told that the scar would disappear after a year. I will be able to go back to work the following Monday so it will not hinder my normal life.

I look at this as an insurance policy-I actually do not need this device right now—my doctor suggested it. It surprises people that many young adults have these devices—kids as young as 9 years old have received ICD's. Remember if doctors are placing these devices in children then doctors are very confident with the results.

Despite being nervous I feel very fortunate for being diagnosed with this disease when I did, I always keep this thought in the back of my head because it allows me to put things in the proper perspective.