Up Those Beta Blockers!

While I am new to this blogging world, I am certainly not new to being passed around between medicines and doctors. Recently, my boyfriend and I took a trip to Washington DC. Our first trip together alone! And the first one with all these new health problems. It was certainly an experience. I've been to DC before, but this time had a whole other meaning. My daily life doesn't include walking, exploring monuments, and museums; though what a life that would be! Rather, I have a ten minute commute to work and I'm mostly sitting in a chair all day. So this was the true test of endurance. At least, since my recent diagnoses.

Day one was incredibly tough, I'm not going to lie. I had to take a ton of breaks between walking and it was hard to keep up with my boyfriend. However, it was totally worth it. Anytime Andrew (the wonderful boyfriend), would say its okay and that we could sit, or towards the end of our day, turn around. With my stubbornness, I refused! And so, I would  push forward and I'd come back to the hotel completely exhausted and wondering if I could survive another day in DC. We had a total of three and a half days there.

I was on beta blockers to help my breathing, but boy did I need more! The beta blocker is specifically for my Hypertrophic Cardiomyopathy. Beta blockers help to slow down the heart as well as lower blood pressure. As a result of the enlargement, beta blockers help the heart pump easier. Basically, its one of the main medicated treatments for HCM. My dosage on this trip was not nearly enough for how I was feeling. I was on 1.5 metoprolol pill a day and it wasn't helping. Unfortunately, chest pain and shortness of breath was much more than a common occurrence. Regardless, we had three museums and tons of monuments to see. I wouldn't slow down until we saw all the major things on our list.




If you're ever in DC, on my list of museums I'd suggest are
Museum of Natural History
Museum of American History
National Air and Space Musuem - FYI I visit this museum it seems every time I'm in DC

DC was really rough for me because it made the clear connection between my mental denial of all these diagnoses and where my body was physically. I am still  in the process of accepting but like I said, its a day to day process. However, I know my future is bright even when I have had some of my roughest days.  

Whether you have heart disease or not, don't give up on your health. I'm certainly not. I'll leave you with the very wise words of Eleanor Roosevelt in regards to her husbands health, "Illness gave him him strength and courage he had not had before. He had to think out the fundamentals of living and learn the greatest of all lessons... Infinite patience and never-ending persistence."

<3
Jess

<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3

August 3rd is a hard day to ever forget. It was the day I was officially diagnosed with two more heart diseases. The reason I say two more, is because I already have a Ventricular Septal Defect or VSD heart murmur from birth. That day, when I received the bad news, my Cardiologist gave me a reality check I really didn't want. It all started when I had a standard echocardiogram to see my heart murmur. Well, that's when my nightmare began. My cardiologist thought initially that my murmur had grown, the size of the hole that is, and it might be necessary to have surgery had that been true. I had one MRI without contrast showing my heart murmur was fine, but showed some other rather upsetting possibilities. I never thought in a million years that once I was cleared from any troubling news about my heart murmur, that by chance, the MRI would have picked up another disease. Well, two actually. I showed signs of enlargement in both my left and right ventricles. My family has a history of enlarged hearts. Did I want to believe that I could actually have it? HELL NO! Yes, I've always considered the strong possibility of inheriting my families disease, but its one thing to think about and a whole other to actually wrap my head around having it.

At first, it was only guessing to know whether or not I had the family disease. I went to my Cardiologist who suggested another MRI. This time, with contrast to get the exact size of how much my heart had enlarged. The second MRI confirmed what I would eventually believe to be inevitable. HCM stands for Hypertrophic Cardiomyopathy. This is most commonly a genetic disease and one that has affected many members of my family. It basically is an enlargement of the heart and there really is nothing anyone can do to slow down the process. As the heart enlarges, it becomes harder to pump. Well, to add to this diagnosis, I also have another heart disease called Double Outlet Right Ventricle or DORV. While HCM has enlarged my left ventricle, DORV which has enlarged my right ventricle. At the moment, DORV is primarily my concern. Basically, without my VSD, the oxygenated blood would not be leaked into the correct area of the heart; therefore, my heart would be recycling the deoxygenated blood to the rest of my body. The IRONY! My VSD, which I always found to be holding me back, whether in sports or daily activities, was actually saving me! Who knew!

I was devastated when it was suggested I had these diseases. At first, I was emotionally numb and I suppose in denial. Truthfully, I kind of pushed it to the back of my mind and kept it under lock and key. That is, until I had chest pain or palpitations. My fantasy of living a healthy, normal, additional heart disease free life, was shattered. I have heart disease times three. Out of my two older siblings and I, it has only ever been me who has had any medical problems. My entire life can be a journal of going from doctor to doctor for numerous problems. If I were to show you a record of the amount of tests I've had, is most likely more then many others have had in a lifetime.

I was simply dealt a bad hand ..but as awful as it has been, I've been able to surround myself with friends who are supportive and loving regardless of the new circumstances I have in my life. In that sense, I can count all of my struggles with health and disease, as a blessing. Only certain people can be a true shoulder to cry on and outside of family, I have found a number of them. From elementary school through college, I have been lucky enough to have found friends that accept me and all my luggage that follows. I even have a boyfriend who is devoted to me more then he probably should be. 

I can only imagine what it's like to be on the other side, whether as a friend, a significant other, or family for that matter, it takes unconditional love to stay with that person through their roughest times. To me, they are the hero's in my life. They are the people that keep me going, even when life seems to put me down. Without them, I don't believe I could gotten through what I have thus far in my life.  

To quote from my best friend, nobody said it would be easy, referring to all my diseases. For now, I'm taking it one day at a time and adjusting to a reality that really has changed my life, in more ways then one. I hope this blog will inspire you, whether you have heart disease or not. Mainly, I hope to inspire myself to make healthy decisions and still live life to the fullest. I may be breaking a barrier within myself by talking about my health with strangers, and maybe even that code of keeping it to ourselves, those who are sick that is, but I think it's about time that was done, don't you? I certainly don't want pity and it isn't welcome here. I simply want to express my struggles and hopes of the future living with heart disease. To quote from a paper I wrote years ago, I might have heart disease, but my heart disease does not define me. 

<3 

Jess