Spotlight on Long QT for Rare Diseases Day

Hi there! Welcome to my blog. Maybe you know already, but for those who don’t, today is Rare Diseases Day. Our family knows all about one rare disease in particular: Long QT syndrome. Long QT (LQT) has to do with the electrics of the heart.

Now, the fact that we know all about LQT is both good and bad. It is unfortunate that this genetic condition runs in my family. Honestly, I wish it didn’t. But it is also quite a good thing that we now know about this condition and how to treat it. Knowledge is power, and I feel it is so much better to know about and manage our condition so that we can live our lives fully.

What does QT stand for? The ‘Q’ and ‘T’ are waves from an ECG reading. The distance between the start of the Q wave and the end of the T wave (Q-T interval) corresponds to the time it takes for the heart to contract and refill with blood, before beginning the next contraction. A prolonged QT interval means that the length of time is beyond the normal amount of time. Although usually caused by a genetic factor, LQT may be acquired by certain medications or medical conditions.

LQT arrhythmias can result in syncope (loss of consciousness), seizures, and potentially, cardiac arrest. There are many medications that prolong the QT interval, and those should be avoided by LQT patients. There is a fantastic resource for us which easily helps to determine if a drug is safe to take or not. It is called Credible Meds and is free, easy to register for, and is an app you can have on your phone.

The great news is that Long QT is treatable.

I think there are a lot of things to be grateful for over this past year of the pandemic. One thing that I am thankful for is the SADS Foundation weekly Facebook live sessions with Dr. Michael Ackerman. Dr. Ackerman is an established and respected expert in the field, and every Friday night (7:20 PM Irish time, 2:20 PM EST) for 40 minutes he talks about genetic heart conditions like Long QT. He is often joined by other world class experts, talking about our conditions, covid, genetics, and generally answering our many questions. Having such easy access to so much relevant information from the most respected in the field is simply priceless. The main takeaway, which is quite positive, is that we can all manage our conditions and live full lives. That will certainly look differently for different people, but it is possible for everyone. Knowledge is key, as is treatment.

We found it immensely helpful to be involved with support groups, especially in the beginning when we were first diagnosed. The Irish Heart Foundation had a wonderful program for families at that time, which brought them together in the fun atmosphere of Barretstown (a camp set up specifically for kids with illnesses). We were able to forget those initial worries and all of the unknowns and be with other families who were going through similar experiences as well as families who’d already been through this stage and had practical advice to share with us.

My purpose of this post today is to spread the word about Long QT syndrome. Not enough people know about it, or know what to do when they see someone ‘faint’ (a typical symptom) or worse still, go into cardiac arrest. Have you taken a CPR course lately? Maybe it’s time for a refresh or to take it for the first time. You never know, you just might save a life. If you feel so inclined, it would be a great time to reach out and help your local heart organizations. They help to get people trained in CPR, which ultimately helps all of us. I just learned of a wonderful program in the US where they teach age appropriate CPR to elementary school aged children. They repeat the program every year, so that by the time the kids leave elementary school, they know CPR without even thinking. What a great way to keep the community safe!

It has truly been quite a journey, and we are still learning, but I’m hopeful for our future.

Stay safe and well!

In Peace,

This beautiful picture hangs in the kitchen for parents of patients in the cardiology ward at Crumlin Children’s hospital, in Dublin. I know this from the times we’ve been there for our Long QT. The Irish says ‘In my heart forever’.

A collage of pictures from the fun the kids had at the Barretstown weekend with other families with hereditary heart conditions.

The grounds are lovely at Barretstown, with a sweet park to stroll. This tree, fairy door and sign were my favorite.

A happy moment in time, captured with the snap of a picture. Barretstown weekend.

Thank you for stopping by. 🙂

A bit of self care goes a long way

white Tulips from The Bay Garden

Tulips in The Bay Garden, Wexford (2016)

I had a few choices of what I could do today (lucky me!). As it happens, self care is not something I’m very good at. Doing things ‘just for me’ doesn’t usually happen, which is something I’m working on improving. Today was delegated a self care day! One important part of self care is nurturing friendships. I have really neglected spending time with friends lately. There just seems to always be too much to do and not enough time to do it – and well, sitting down and relaxing doesn’t usually feel like the right thing to do. But sitting down and relaxing, especially with friends, is sometimes the *perfect* thing to do.

Pink Purple Tulips Douglas Bader

Pink-Purple Tulips (Douglas Bader) in The Bay Garden, Wexford (2016)

Today was one of those days where I jumped at the invitation to join some friends for breakfast. How lucky I am to be able to do so. I absolutely appreciate that I have the time to meet friends and enjoy their company. We exchanged parenting stories, life stories, tried to solve some of the world’s problems; essentially we had a lovely time together!

Blushing lady Tulip

Blushing lady tulip, in my garden

After I arrived back home, it was time for more self care: of the “Health and Fitness” variety. This is something that, throughout my entire life, I have stayed on top of. I’m not sure why, but it could be that from a young age we were always involved with sports all year long. Throughout my adult years I’ve tried different fitness programs and different sports. Last year we did a lot of biking. The training was for a challenging 100 km bike ride in September, which was an incredible experience. But when I got on the bike in January, I wasn’t enjoying it, for a number of reasons. So I went back to basics, which for me meant walking.

Ballerina tulips

Ballerina tulips, in my garden

I love walking. I have always loved walking. But even walking is different for me now. Three years ago I was diagnosed with a genetic heart condition called Long QT syndrome (type 2). It has to do with the electrics of the heart. Another time I’ll go into the details of that. But the treatment for LQT2 is beta blockers. I heard a description of what it is like to exercise while on beta blockers, and I have to say it is a pretty fair assessment: It is like trying to run through deep, wet cement. Personally, in the beginning, it felt like someone was placing the palm of their hand on my forehead and preventing me from going forward. It was tough. So basically, when everyone else’s heart rates are increasing to circulate the blood throughout the body, mine is “blocked” to stay at a low rate. But I’m still trying to do the same activity as the person next to me, just not getting the blood circulating through my body like it needs. This = going slow, and sometimes feeling ill while doing so.

Tulip conbination: Don Quichotte and Mystic van Eijk, in my garden

It’s frustrating. I’ve gone through a period of feeling sorry for myself. Yes, I did.  Still creeps in there sometimes. I want to go fast! I want to keep up with everyone else! I want to be the best I can be! But wait, I am still the best I can be. I just shouldn’t compare myself to everyone else. But wait again, I probably shouldn’t have been comparing myself to everyone else anyway… 🙂

Foxtrot Tulips, in my garden

Foxtrot Tulips, in my garden

It has taken me six weeks, but I am finally feeling my fitness levels starting to improve. I had an awesome walk today! I’m not fast, and it still takes me a long time to recover, but at least I’m feeling better during the exercising. Hopefully soon enough I’ll be back on the bike and enjoying it again.

Queen of the Night tulips with a backdrop of Hawthorn trees in flower

Queen of the Night tulips with a backdrop of Hawthorn trees in flower, in my garden

I could probably find a hundred things to do instead of exercise, but just like meeting with friends, it is important to take care of ourselves. I think I’ve written a few times about similar topics, actually, because I need to keep reminding myself of how important it is! The more busy I get, the more important it is to take time out, for me. It helps to keep me balanced. And happy. 🙂

I hope you are making time for your own self care. It’s something we all need.

In peace,

Parrot tulips, in my garden

Parrot tulips, in my garden