10 Years Ago Today

It’s been 10 years today since I started this blog (http://livingwithfh.blogspot.com/2011/02/welcome.html).  At that time, only few and mostly meager results popped up on google when you searched for “familial hypercholesterolemia”. There was no FH Foundation (https://thefhfoundation.org/), no FH social media groups, and outside my family I didn’t know anyone else that had FH.

I started this blog from a need to find out more, but also to document my journey and share it with others who I knew were out there, for you know you’re never an island. You know, even if you don’t have physical proof, that there have to be others, thousands, maybe millions like you. I was also wondering whether they would be confused if they were lucky enough, like I have been all my life, to find a doctor to diagnose their FH right. Would they be lost and not know where to from there? Would they know what to expect in this journey when it comes to treatments, side effects, tests, and complications? I was going through all of them – all the treatments available - I was finding some, I was rejecting others, I was going through tests several times a year and learning more about what FH does to my body. I wanted a place to document all those and a place that others would find helpful so they won’t feel like looking into a dark hole when they were faced with this diagnosis.

I wanted the blog to be that connection from them to at least one another person like them. Although I had my family, I was missing that connection to others so badly.

I have always said since I started the blog that if even one person reads my blog and finds it interesting for one reason alone, learns one thing they didn’t know, if even one person feels less alone, less lost, and more encouraged that this disease is manageable, that this disease does not have to rule us although it defines us, then my mission with this blog is complete. That’s all I signed up for: one person and one thing.

Over the years, I have exceeded that goal and I am forever grateful to all of you who have constantly reached out, who read this blog, and who have sent your comments to me over time. I always say it here and I pray for it every day that I wish you much health and good luck taking care of you and your families.

A lot has changed in 10 years. Aside from meeting so many others with FH, the FH Foundation was established also in 2011 and they also found my blog and invited me to be an advocate for FH. This was such a blessing as it opened the floodgates to information about current research and increased my own knowledge about FH, as well as, inevitably, increased the knowledge I share with all of you in this blog. But also, the most precious gift to me after connecting with them was to connect with many others like me and learning from their journeys. I am sure this connection would not have happened had it not been for this blog.

A lot has happened in the world of FH as well in the past 10 years. We now have our own ICD 10 codes for FH, and we even have a National FH Day in September. There are charity events (https://livingwithfh.blogspot.com/2017/08/fun-with-purpose.html) focused on creating awareness for FH, and I can tell you – most of my friends and acquaintances now know exactly what I have, what it means, and what it can cause. 10 years ago this was merely a dream.

It’s amazing what this small personal endeavor, a simple blog with the help of technology (a free blog and social media) can do! How many bridges it can build and how many relationships it can forge. How much support and hope.

Thank you to all of you who read here. Thank you to everyone who subscribes on Facebook or through email. I do hope, still, that you continue to find at least one helpful thing from my journey. And thank you for sharing yourselves, as well, through your comments and private messages. I am grateful I ever found you all.  

Days when you realize that dreams do come true are the most special. Today is one of those.

Here’s to the next 10 years!

On the Fifth Anniversary of My Heart Surgery

Hard to believe that five years ago today I was getting a new heart. They call it an open-heart surgery (OHS), but for all intents and purposes, it was really a rebuilding of my heart: a Bentall graft implanted in the place of my aortic valve, root, and ascending aorta; an aortic arch endarterectomy (repair), several endarterectomies of several main arteries in my heart, and four by-passes. My surgery is documented here: https://livingwithfh.blogspot.com/search?q=day+1+to+8 .

Just like every year on this date, I will read the surgery report and just wow myself into stupor. How much can a body take? Hours on the heart-lung machine, circulatory arrest flirting with the limit allowed, heart attack following the surgery, neuropathy for years after that, closed up by-passes years later, pump head that’s lasted now into my fifth year … But also, how brave and certain and a little crazy can heart surgeons be to have the courage and the firm hands to do it all?! The depth of human knowledge and curiosity and bravery to push boundaries never cease to amaze me.

The surgery was still the hardest part of this journey, I won’t lie to you. Just the thought of what the body went through, the risks, the pain, the sheer demolition of every nerve I was ever made of. Everyone told me right after surgery that my body got hit by a semi and I need to take it easy, and that was not a joke. Like I said before; I  felt like my body went to war. And it lost.

But also, the faith, the amazing knowledge of the Utah Valley Regional Cardiac Surgery team were humbling and awe-inspiring, to say the least.

The recovery, little by little, revealed new surprises every year. Every day. I had to learn how to function with neuropathy in my left hand and leg first, as well as how to breathe with neuropathy in my diaphragm, when my lungs were not getting a full load of air. In time, they all cleared up except for my pinkie and ring fingers – they are still full of needles.

I had to learn how to exercise again, a little bit at a time, after two bouts with Cardiac Rehab, a year and a little bit apart. Like a vet that comes injured from war and has to learn how to walk again, one small achievement at a time, I had to learn things and learn my new body. I was amazed how much it felt like I did get a new body, when in fact only the engine was replaced.

I had to learn new ways of monitoring my health, like managing my INR – and how not to freak out every single time the numbers are too high or two low … This, too, this scare and worry (because it’s still here and it’s constant), must be your friend, because it’ll never leave you … You just need to tell it some days: ah, well, we’ll try better tomorrow! Just chill!

Same goes for not freaking out when you accidentally cut off a piece of your cuticle while chopping veggies and then you can’t stop the bleeding. You learn about the amazing power of coagulating bandages that grow a scab for you when your body can’t.

You have to get used to new blood pressures and pulses. New, more difficult ways to get an accurate echo of your heart or even a good cath – because that Bentall graft is in the way. Catheters have a hard time getting through it to look at the really small vessels and it casts a shadow on your valve and heart and they’re never too sure what they see anymore … Much trust.

All such memories now, but also all part of the new me and new normal. You have no choice but embracing the new-ness. It is the new you. It is the better you. I feel different today and in some ways I feel like I exchanged old problems for new ones. But, believe it or not, the new ones seem more manageable than the old ones. My aortic valve is not two thirds shut anymore. My LAD is not 99% occluded anymore. My stamina for lengthy exercise, albeit slow to moderate, is much better.

Some things are different but still there, like the chest pain and the neck pain from the stenoses in my carotids. A lifetime of echos, ultrasounds, and MRIs is still the norm.

Although I took things easily right after surgery, little by little life became more normal: I started travelling, first by car, then by plane. Within a couple of years I found the courage to fly to Europe. I have been there twice since the surgery. I have been on two cruises (before Covid, obviously) and several times to Canada. I also traveled across the country by myself several times for work. It was, again, like learning baby steps. But it is possible. I can tell you I am in touch with every sensation in my body. If something is “off” I feel it right away. This has not stressed me as it’s made me more curious to learn more.

I have also learned so much from other patients. I have made friends during this journey that I would not have made otherwise,  people like me that share freely, honestly, vulnerably their own journeys. Their stories make me so much stronger and make me believe that there is so much strength in us. All I have to do is learn courage from them and find it in me. We all have it. Of that I am sure.

I have also become so much more grateful for every good day. Every day when my tiredness is not too much, I am grateful. I have become more grateful for my family. Every day that my husband does something for me to help me through – I bless him and people like him, those who truly have helped me through this, without whom I would not be here today. Of that I am also sure.

For those out there contemplating whether they should have OHS, I hope you find the strength to do it, and the faith that it can improve your life. I also hope you find the strength in your family and a great team of doctors to walk hand-in-hand with you through this journey. All I know is: you are never alone. You are the main hero of your destiny, of course, but there is a web of little helpers out there that will carry you through. To all of those little elves, starting with my surgeon and ending with my husband, my tireless caregiver – I owe them my life. And I humbly thank them.

Happy journey to all and Happy Heart Month!

On the left: February 11-12, 2016: the day of the surgery, before they wheeled me in; the day after surgery.

On the right: February 11, 2021