The Power of a Community

When I first started this blog there were virtually no resources to use as reference for my disease. All I knew is that I have a rare form of Familial Hypercholesterolemia, but at that time I didn't have a name for it. I knew my dad and his dad had a lesser form, and I knew what that did to them. But outside of my own family I had no resources to learn more about what this disease means for me, in the long run, and what are all the available tools where I can learn more about it, or learn more about managing it. More than that, I never knew whether my fears and my apprehension was mine alone, or those feelings were normal, as we are trying to understand this disease.

Most of my doctors were themselves in the dark about what it means and what to do with it.

Fast forward a few years later, I found a discussion group on Facebook (the Familial Hypercholesterolemia (FH) Discussion Group - https://www.facebook.com/groups/47098836197/) which made me feel a little bit less alone in the world. There, I started seeing comments and questions from people just like me who wanted to know more information or just wanted to share their journeys with others like them, and to be heard. A feeling I knew too well.

Fast forward yet some more time, and The FH Foundation was founded and even later than that I became personally engaged with it. They are great for a lot of reasons (just check out their website and learn for yourself: http://www.thefhfoundation.org/), but the one reason I love the most is, again, because they bring people like us together. We can learn from each other and feel that we are not alone.

Medicine has advanced and I find that now more doctors know, for the most part, how to deal with our disease, or at the very least they know what specialty care they can refer us to so we can find proper management for FH. It is with this advancement that I now know for sure that I have HoFH, because genetic testing is now more available than before. But if it hadn't been for these resources and these groups of people and their experiences, I would not have known what would have been possible for me.

Medicine advancement is great, for sure, but the strength we can find in the community of people that share the same experiences, fears, as well as successes and victories as us is invaluable! It's like a much needed virtual hug. 

Every day, I thank people who have put these types of forums and resources together for their time and their drive to fill a void that was very much painfully felt for people like us.

This week is Rare Disease Week (February 28 is Rare Disease Day). Because I have HoFH which is the rare form of FH, I want to use the platform that I have to thank all of you for sharing your experiences with me, over time. I hope my journey is also helpful to some of you. To all of you, I say: you are not alone. We have each other, and I hope you reach out and know this to be true. I hope you will use the platforms that you might have (groups, and social media accounts) to share with others and make other lost people feel less alone. The power of a community of like-minded people is truly priceless.

Much health and hope to all of you!

Two Year Anniversary Since OHS

It's been two years now, since my very involved heart surgery, and what I consider my re-birth, really. Every year on my anniversary, I read through my story which I wrote right after being released from the hospital, and I look at the pictures I took during my recovery year. It is a therapeutic remembrance, and it also puts things into perspective: if I am still worrying now, I need to see how bad off I was and how far I have come and I need to appreciate the life I have managed to live since then. The time I got after this surgery is bonus time which might not have happened without it. For that, I am forever grateful!

I will always be a heart patient. I wish I could be here today and tell you that you get your surgery and you're done worrying and you're done thinking every day about whether your heart is healthy or not. I don't care who your surgeons and your cardiologists are and how wonderful they are (and they are truly miracle workers), you will always wonder “is my heart truly all right?! Am I truly OK?!” At least I do. I wish I could say you're done seeing doctors and getting tests done, but it would be a lie.

But have you ever seen those trees that grow up crooked in the forest?! A brand new tree springs up, and they are straight and pretty when they're a sprout. And then, they hit a rock in their growth towards the skies, and the rock is right there, on top of them. But do they die?! No. They learn to grow crooked and around the rock. Their trunk bends around the obstacle and eventually they come back springing towards the skies, again, when they have grown past it. They will always look more interesting than the others which grew uninterrupted and straight. They will be crooked, but alive, and strong. Maybe that much stronger. This is how I feel, too: not perfect, not worry free, not whole but alive and with so much to live for!

Although there are plenty of things different for me, different than before the surgery and different than a healthy person, I can say that I feel like I do have a full life. I work full time, I travel, I write, I advocate, I walk (although not very fast, nor running), I eat what I want to eat, for the most part – a proof of this is all the 10 lbs I gained over the past year! I could be skinnier (I am 115 lbs) and less out of shape, and I wish my heart could do more to support that plan. Ever since I moved to lower altitude, my energy level is much better than when I lived at 4000+F. I still get tired, but I feel like I last longer than before.

How I have felt since surgery seems to be changing constantly. Some things have been the same since the first day after surgery (the numbness in my left arm, the shallow breathing, the raspy voice which sometimes completely vanishes, the difficulty remembering common words, the occasional stutter, the very weird blood pressure), but some things are new: the shortness of breath when I exercise or walk up the stairs is still lingering on, which is surprising to me, the occasionally high pulse (even on a beta blocker), the dizziness and ringing in my ears, the feeling of the earth opening up under my feet and having no stability at all. A new thing is also the fact that now, I can hear my valve even when it's not completely quiet in the room. My valve had been so quiet for the longest time after surgery. But now, I can hear it, and my husband, who would be sitting near me, can, too. It took almost two years to get to hearing it and I cannot tell you why that is.

Every now and again, I have this claw-like feeling in my chest, like someone is squeezing my heart really strongly. I take my blood pressure when that happens and it is as weird as it always is: either 160 over 50 or 130 over 40 – so nothing really strange there. I am not sure why this happens and this unsettles me, but so far no doctor has been able to explain this to me.

I do know that my heart is not 100% strong and healthy, and I have learned to accept that, like I said: I will always be a heart patient and I will always have to keep an eye on it. Diagnostically, they continue to find one thing or another: I have aortic insufficiency and my new aortic valve is still leaking (mildly, though). They also think that my body gets about 64% of the oxygen that it needs to get, something they call cardiac impairment. More tests are needed to determine this for sure and to determine the cause, so more will be scheduled.

I take 10 pills every day plus a shot every other week (I am treating my HoFH along with my heart disease). Sometimes I wonder what it would be like to just stop it all and just see what life would be after that. But I know that’s not possible. I know there is no life if I stopped this all. And I love life way too much to experiment that …

Another constant since my OHS is my relationship with Warfarin. Although I have learned to trust it more, and although I have been on a dose now for a year or so that has not needed to be changed because I am constantly in range, I do always fear that something (anything, really) will make the INR dip low or sky-rocket. I have learned that antibiotics make it sky-rocket and apples do, too. I have also learned that since on Warfarin my liver responds faster to other liver-poisoning drugs (like antibiotics or even pain killers).

I have stayed away completely from spinach and kale, but I still eat peas, green beans, broccoli and salad several times a week. It was hard to get used to this “consistency” thing – you have to have the same amount of greens every week. It was hard to figure out a cup of veggies every day in my diet, but I have learned to think in weeks instead of days when it comes to Warfarin: if I have those 4 cups of greens (or whatever it is) in a whole week, I call it good. I don't obsess so much over what I eat every day, or with every meal.

My life with INR is like that night-light you have in your bathroom that shines from under the door at night: you know you're settled for the night and it's nice and quiet and ready for slumber, but there is one light which will not turn off, as a reminder that it's not completely dark, after all. But you can still sleep through it, nonetheless.

I have not cut off a piece of any of my fingers anymore, and with an INR range of up to 2.5, I fear internal bleeding less and less. I am still very much afraid and paranoid about infections. I have become your worst nightmare germaphobe, but I can live with that. I get frequent UTIs which throw me in long psychoses, obsessing terribly over whether the infection will get in my blood stream!

My relationship with alcohol has changed, too: I drink mostly non-alcoholic wines and beers (yes, they make them!), and I have an occasional glass of something “real” which will always raise my pulse and make my heart beat so hard and fast I feel like it will pop my chest open. I don't like that feeling, so I stay away from it … I don't think this is a huge sacrifice since I feel great when I don't have alcohol – so, it's all good. Coffee is much the same as alcohol: I have only had decaf for two years now and some weeks I have no coffee at all. I seldom crave it anymore.

I keep telling myself that this is all a process, and things will change as my body changes and ages and develops. And it's true. I expect my symptoms to be different over time and changing, to some extent. But every time something new happens I wonder is it just a change? Or a change for the worse?! I wish I had a doctor I could trust again to explain all these to me, but not yet.

I have moved to NC late last year and the doctors that went through my heart surgery with me are not near me anymore. I tried to see a cardiologist in my new home town and it was a bad start. She did not get what I had gotten through and the seriousness of my heart condition at all. Now, I am starting anew with another cardiologist, but it will take a while to see him. I have learned that bigger cities means bigger waits to see people and do tests. I worry about not having a heart doctor at the moment. Having one I trusted and one that was involved was my security blanket. And I miss that dearly. I never underestimate the peace of mind that comes with a good doctor who knows you and gets your condition. Knowledge has always been power in my opinion, and I miss that!

But aside from all these symptoms and fears, I think life is good. With every morning when I see the sky first thing, I thank God and my surgeon for giving me another day. Life is what you make of it, they say, and with my limitations and nervous worries and all I am trying to make a good one. I love my husband, I love my family and although far from them geographically, I try to stay as close to them as Facetime and Skype allow. I am there for my team at work, sometimes for 10-12 hours every day (I work from home now, by choice, not because of a disability). I am planning trips and looking forward for more camping this year. There are so many trails unexplored out there! Life goes on, obstacles and all, crooked body and all. We just need to find that clear blue sky to rise towards. The rest is a miracle!

You can read about my surgery and hospital stay in this blog which I wrote two years ago: http://livingwithfh.blogspot.com/2016/02/open-heart-surgery-day-1-to-8.html

For a visual journey (through pictures) of my first year, you may scroll through these shots: https://wanderworldpics.shutterfly.com/22602

Much health to all and much hope!