Tuesday, August 04, 2020

As you get older, life changes

Hi, I'm Benji.
(Yes, this is my normal greeting.)
I am fifteen years old and have been home-schooled for three years now.

My interests are working with my hands, computer programming, and video games. I also play the guitar. Currently the acoustic but I am itching to eventually get my hands on an electric. For exercise I participate in CTF Taekwondo.

I have congenital heart defects. The coarctation of the aorta and patent ductus arterosis were taken care of when I was a week old. We are still monitoring the bicuspid aortic valve with stenosis. This will be my life long journey.

This blog is mostly used to update how I am doing and currently I am doing quite well. :)

Wednesday, October 09, 2019

Life with CHD, keeps you busy.

It has been awhile since I've updated. I apologize to those that keep up.

In June 2018, I had a heart cath because the numbers with my bicuspid valve and the aortic insufficiency were not the best. The year leading up to the cath was difficult as I was put on full restrictions and had to limit what I was able to do physically.

For a preteen, that kinda stunk. I wanted to run around and ride my bike and climb trees, but I was told it wouldn't be the best. CHD has a lot of effects on a person that not everyone realizes.

I am diagnosed with anxiety disorder and one of the ways I have always combated it was by being physically active. When that was limited, there were repercussions. 7th grade was very difficult and I ended up being pulled from public school. Looking back, it was a good thing.

So!

After the recovery from my heart cath, I am told my heart is functioning the best it ever has. I am still not "cured", there will still be regular 6 month check ups for a while and maybe eventually going back to annual. I am now released with no restrictions as long as I stay hydrated and take rests when needed. (WooHoo!)

After my checkup in April, I signed up to do Tae kwon do. Yes, I did it in the past. When I was younger I worked all the way up to red belt with stripes and was 3 months from my black belt. That was WTF Tae Kwon Do. It is the discipline that participates in the Olympics. When I signed up in April, it is with CTF Tae Kwon Do. Both are good disciplines, both keep you active and help with focus. I am currently at a yellow senior belt. Being able to participate in a challenging physical activity really helps me. I love it.

TKD also qualifies for my physical education credit with home-school!

Homeschool is doing okay. I would rather play guitar or dig a hole though. 9th grade is a big thing.

So now we are here. October.

Had my heart checkup Monday.  My bicuspid aortic valve has remained stable for the last year. There is aortic insufficiency but right now it is mild. The aortic arch has maintained its repair perfectly from its correction in 2005.

Wednesday I start rehearsals for the fall/holiday concerts I am part of with The Quest Center of Dickson.

It's good to know I am in a season of grace. Mom has said she won't put her guard down, but we will enjoy this season.

Friday, May 12, 2017

May Heart Checkup... The battle isn't over

How do you know what life will be like tomorrow? Your life is like the morning fog - it's here a little while, then it's gone. James 4:14
As a Congenital Heart Defect (CHD) Warrior, one learns that no day is promised. While today may be a good day, there is no guarantee that tomorrow will be. Interestingly enough, scripture tells us the same thing. 


In the last couple weeks, congenital heart defects/disease got a boost on the awareness side of things when Jimmy Fallon shared about his son Billy being born with tetralogy of fallot (ToF) and having to have surgery. When Fallon went public, he also had Shaun White, famous snowboarder and skateboarder, share how he has survived with ToF. It is amazing and awesome that a Critical Congenital Heart Defect (CCHD) can be corrected so that the patient can live a VERY normal and non-restricted life.

But it isn’t always like that. There are some CHD that have life long complications and the quality of life is limited.

May 9, 2017 echo-cardiogram For those that follow my blog and know me, you are aware that I was born with Coarctation of the Aorta (CoA), Bicuspid Aortic Valve (BaV) with Stenosis, and Patent Ductus Arteriosus (PDA). The CoA was repaired by using my subclavian artery to create a flap around the aorta to allow blood flow and the PDA was fixed when I was a week old. The BaV was determined to be stable enough to leave so that I could grow and get stronger. I visited my cardiologist every three months, then every six months, and then once a year… up until this past January.

In January, the left ventricle of my heart (the lower chamber on the left side) showed a significant thickening in the muscle. This is caused by it having to work hard to keep the blood flowing with the BaV. Imagine if you only lifted weights with one arm, that arm would develop a thick muscle. While the muscle getting thick may be good if you are a body builder, it is not good if it is your heart.

This thickening, or stenosis, is not a surprise. When a child hits puberty there is massive growth everywhere! They get taller, their heart grows, everything gets crazy for a minute. In children that are born with CHD and CCHD, the heart has to be watched especially. Any repairs that have already been done and any existing defects can cause issues.

Fast forward to Tuesday.

After my visit in January, the cardiologist brought us back to 6-month visits. We did not know what to expect this visit. I went to the cardiologist knowing that there were several different scenarios that could play out. Rather than worry, we prayed. God is more than enough.

I was weighed and measured, had my blood pressure checked and o2 stats taken. Nothing odd or scary there except I am 5’7” and 12 years old. Brought up that I tend to stay cold and was told that we needed to pursue the issue with the pediatrician since my circulation and blood flow is good. Then came the echocardiogram.

sandworm from Dune
Dad got to see that my ventricle looks like the sand worm from Dune, only slightly puckered. There is significant stenosis, but it is not notably increased since January. The aortic valve is regurgitating at about the same rate it has been. Pulse is strong in the 70s. Blood Pressure is good for a twelve-year-old. My cardiologist believes we are still going to wait, but she is going to run everything by the cardiac cath lab doctor.

No news is good news for now.

The downside is that I am now on physical restrictions. No running, only recreational swimming with breaks to rest often, no hiking… pretty much everything a twelve-year-old boy does during the summer. Thankfully mom is working on activities that I can do, and I have some friends that are willing to be patient with me.

We go back in November to see how things are. We are praying for the Lord’s healing touch.