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.

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

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.

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.

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.

It only take one. One in a Hundred!

Dear friends and family,


I accepted the challenge of participating in the Congenital Heart Walk to raise funds for research and programs dedicated to fighting congenital heart disease—the most common birth defect in the United States. The Congenital Heart Walk benefits two great national organizations, the Adult Congenital Heart Association and The Children's Heart Foundation.


I am writing to ask for your help by supporting my fundraising efforts with a donation. Your tax-deductible gift will make a difference in the lives of many! It is faster and easier than ever to support this great cause - you can make your donation online by simply clicking on the link at the bottom of this message.


I challenge you to donate $25 and to share with friends and family.


Congenital Hearts Defects occur in approximately 1 out of 100 live births. These defects can be something as small as a hole in the heart or something major requiring a heart transplant for survival.

I was born with a Critical Congenital Heart Defect, the Coarctation of the Aorta (CoA) and a Bicuspid Aortic Valve (BAV) with stenosis. At a week of age, I had closed heart surgery to correct the CoA with a subclavian flap repair. This repair has been successful and I have been a mighty warrior for the last 12 years.

This success is because of PEOPLE like YOU and I making a difference and supporting research into Congenital Heart Defects. Not just in why they happen but most importantly how to correct them so the patient has a VERY good quality of life.

Thank you.

Benj
Any amount, great or small, helps in the fight again CHD. I greatly appreciate your support and will keep you posted on my progress. Thank you.


Click here to visit my personal page.

If the text above does not appear as a clickable link, you can visit the web address:
http://events.congenitalheartwalk.org/site/TR/Walk/General?px=1033401&pg=personal&fr_id=1703



Click here to view the team page for BenjisBrokenHeart

If the text above does not appear as a clickable link, you can visit the web address:
http://events.congenitalheartwalk.org/site/TR?team_id=13286&pg=team&fr_id=1703&et=MluFGHKMkQ8mdqT7lz6EXA&s_tafId=7669

New Year, New Checkup, New Results

Hi guys, I'm Benji's mom. Sharing my thoughts right now. Momma's have to process too.

Yesterday we went to the annual cardiologist visit. Benji was very tired because he didn't sleep the night before. Schedule changes cause issues with sleep schedules and we just went back to school on Wednesday after 2+ weeks for winter break.

The last month or so, there has been a feeling. I can't explain it. I just have had a feeling that change was coming and it is/was centered around Benj.

I need to say, I fully appreciate medical personnel, please don't think I don't. After I woke Benj up from where he crashed in the waiting room... the nurse took us back and proceeded to get his vitals. (Standard procedure.) Benj weighed 133.4lbs and is 65.5". (Major growth spurt.) His oxygen levels were at 99%. Blood Pressure in his right arm was 95/70. (Note he was resting, had been asleep.) Everything looked good; until the blood pressure in his right leg was read. It came back 111/75. Not a major difference, but I realized there was a problem when the nurse came back to check it again. The second time his leg was 126/103.

My mother's gut twisted. I knew something was going on. I started praying. Praying to know what questions to ask. Praying to be able to maintain composure no matter what news we were given. Praying to be Benji's rock if needed.

The doctor came in and she started reviewing his medical history. Asked a few questions about anything being different. I brought up his fatigue and headaches. She said she was pretty sure that would be his ongoing sleep issues. (Which the child stays up all night unless we are able to wear him out.) She noted that at birth the only procedures done was the repair to the CoA and the PDA, there was not a cath procedure. That mother's gut twisted a little bit more.

First step, the EKG. Benj laid down on the table and was asleep before he was completely hooked up. As he lay there lightly snoring and still, it was a moment of peace. It came out good. Rhythms are healthy.

Next, the ECHO. His aorta is nice and healthy. The repair is maintained. (Subclavian flap repair at one week of age.) His bicuspid aortic valve has moved into the mild stage where it was slight. The thickening of the left ventricle is concerning. There is a significant change, and our cardiologist is conferring with the surgeon as to whether we do a heart cath now or wait.

All of this can be overwhelming. For almost 12 years while Benj's heart has been monitored, it was stable and we had convinced ourselves that the big hurdle was done. We were fooling ourselves. Benj will always need a cardiologist and always keep an active role in maintaining health. As I research his condition (originally CoA, PDA, BAV with stenosis) I am seeing that this will be a lifelong medical concern.

I know what our journey is taking us to is a walk in the park for some of those in the CHD community and I will not take away from that. Yet, this is new and undiscovered for us.

• How do you talk to your 12-year-old child that has Aspergers about what is coming?
• How do you prepare siblings for the changes that will be coming?
• How do you keep a level head? (hello?!? This is my baby we are talking about.)

I'm trusting in God, I know He will bring us through. He always does. He is always faithful. I ask that you pray with us for God's favor and provision.

~ Benji's Mom