Breathe In. Breathe Out.

Well. That wasn't nearly as bad as I thought it was going to be! The cardiac cath happened on Tuesday and while I was freaking out pretty much the entire morning of, the worst part of it was actually having the IV put in. The doctor who performed the cath was extremely nice and I hope I actually have him as a doctor again soon. The overall procedure was pretty quick and to an extent, painless. I was awake during the whole procedure and though I couldn't understand all the medical jargon, I still was very comfortable with what was going on. Surprisingly.

I saw no blood aside from when the IV was being put in and that was perhaps the best part of this entire experience. I did find out some news though.. and while it can be taken in a bad way, currently I'm very optimistic about it.

Basically, the results of this diagnostic test were that I have a significant blockage in my right chamber from a muscle bundle/fiber, the obstruction, that is causing that part of my heart to have a higher pressure then it should. From what I understand, it causes the shortness of breath but over time, it could become worse. I'm pretty sure the stress test won't happen for this reason.

So the solution? Well, the good news is, it can be fixed! However, bad news, it will have to happen through open heart surgery. Even before I went into the procedure, call it intuition, or just that good old feeling, I knew I was going to need surgery. I think I've been mentally preparing myself slowly for that outcome since I went to meet with this doctor in the city. 

While I could be scared shitless, or I could just be plain upset and dreading the day it will happen, I'm surprisingly optimistic. I finally have answers and I can finally say, this wasn't all in my head! Take that you butt munch of a doctor! (referring to ->JERK CARDIOLOGIST) My family on the other hand could be handling a little bit better.. those whole five stages that people are supposed to go through prior to surgery.. yeah I think individually, my family will cover them all and I won't have to deal with any of those feelings. At least I'm keeping my fingers crossed that is.

In case anyone doesn't know them, they are denial, anger, bargaining, depression and acceptance.

I actually think I've already dealt with all of these feelings and finally the acceptance part is where I am at because surgery is a solution!

Everyone else around me... not so much. I think the person taking all of this the hardest right now, without a doubt, is my mom. She's been in denial since I've said that I've had the HCM. Now she's more just an overall sadness and anger that they didn't find this in the last cath I had done in 2004. I keep trying to explain to her that this new disease is really what has caused more of these problems.

I had the obstruction my entire life, it wasn't until I had developed the HCM, I believe, that all of this really came together as being a bigger problem then anyone could have predicted. It's no ones fault, despite what my mom may think, and you know sometimes you're just given the unlucky cards in life. I don't think I can sit around waiting to live and to keep asking why. I think I've already done that long enough.

I've been lucky enough to have traveled, near and far and live a pretty good life for only being 22. I've also been lucky enough to keep the most important people in my life, close to me. Through it all, people could come and go, say they've had enough, but the people in my life have chosen to stick by my side despite everything going on. If anything, they are closer to me than I deserve. To each and every one of them, I want to thank them for being my backbone when I lost mine. To me, you are my hero's and I'm glad to call each and every one of them my friends. 

Of course, I will never be happy that I have to go through something like this in my life. But I also think, in some odd way, its a blessing in disguise. Life wouldn't be worth living if it was perfect.

We all deal with hardships, some more then others, and we can either grow as a person, or we can take it, run away from it, and stop living.

I choose to live. I choose Life.

It might a bitch of a surgery, so said the cardiologist, but I'll be willing to do it, if it means living a better functioning life then I am now.

My quote today, and perhaps everyday of this past year and in the future: "Nothing worth having in this world comes easy" Scrubs (love this show, always can give you a good laugh)

So keep living. Sometimes you can't appreciate the good times until you've been through the hard times.

Don't forget to try out something new! This is the southwestern ratatouille I mentioned in my last blog.

Until next time

<3
Jess 

Cardiologist, ER visits, and Misdiagnosis - Oh MY!

After having an overall productive week with moving along my career ambitions as well as trying out some new cooking skills, the end of the week seemed a bit bleak. Unfortunately, yesterday after taking a nap, I woke up to some very alarming symptoms. I was sleeping on my left side when I awoke with a very strong discomfort in my chest. I laid flat on my back only to have my heart start palpitating and my left arm hurting. While I thought it might have been from laying on it, it still hurts even a little today. At its worst point, I felt pain all the way to my finger tips. Heart Attack? Maybe.

The other alarming symptom I felt was my face had become numb, up to the sides of my cheeks and when I finally looked in a mirror yesterday, it turns out my face had looked like a chipmunk! This was as bad as when I had my wisdom teeth out! While I was going through this, my nursing friends were saying go to the emergency room asap because I had signs of both a heart attack or stroke, especially with a low BMP. However, I couldn't do anything until somebody was able to come and get me. I could have driven myself.. but I didn't feel safe enough doing so.

I waited. And waited. And while I waited, my friends kept pressing me to figure out something, whether it was to call an ambulance or they would do it for me. I guess to say in the least, if my nursing friends were upset, it made me a little more upset too. So finally when my sister got out of work early for me, I had already called the cardiologist to see if they could get me in. Low and behold, they could! (Trying to avoid the ER at all costs)

I got an appointment with the defibrillator doctor! And considering, one of the nicer doctors I have met within that office. Good news - he didn't think I had a heart attack or stroke. Bad news - maybe blood clots.

He basically said, pack an overnight bag and plan to be in the hospital.

While I'm comfortable in a hospital, after being there both the entire week before for family and then working the previous two days there, I can say, pretty much last place I wanted to be. The ER seems to never be my friend. Ever. I always end up seeing the doctor I hate, who by the way, did misdiagnosis me before I had all of my new developments. 

This doctor always seems to think I overreact. Every time I've met with him, he's never actually took my symptoms seriously and always believes that I'm purposely in the ER for no reason.
JUST SAYING, I WAS SENT THERE!

Some doctors are truly a disgrace to profession, especially if they judge the patient only what they've read rather then having talked to the patient. He certainly isn't a very compassionate person and all I have to say is, some people are not meant for the medical field. He is one of them.

So, both doctors from the same cardiology office, disagree. The first doctor I saw, who sent me there, believed it was blood clots. The second, if you couldn't have already figured it out, said nothing wrong with you, go home. While I hate being in the hospital and being poked and prodded and explaining my long list of history every time, I honestly can say, I was quite frightened by not knowing why I was having all these symptoms.

What ended up happening was, I had a ct scan of my brain to make sure there was no blood clots and there wasn't. THANKFULLY! It took forever to actually get the results and by the time I was ready to leave, I was frustrated that no one had looked at me in a while; the the fact that I still was feeling symptoms from 1030 in the morning all the way through to the evening and still some today, I was and still am a bit upset. Obviously, the ER doctors and that cardiologist weren't helpful and I would have rather just left. They acted as though this was a joke and quite frankly, if that's how they treat their patients, I'll be the first to go to a different ER next time. 

Perhaps why I was more frustrated yesterday was because I found out the previous day, I'm having my cardiac catherization done this Tuesday! I already have been in the hospital for work, family and now myself, for a week and half. NO MORE HOSPITALS THIS WEEKEND! Not to mention, right before I had left for my cardiology appointment yesterday, I got a prep call from the hospital I'm having it at. Turns out, its not going to be the same as my cardiac cath I had done in 2004.

Rather then having anesthesia. I'm having just sedation.

I HAVE TO BE AWAKE DURING THE PROCEDURE!!!!

Before I was like, I've got this! I've done this before. This time, I won't wake up and see blood, rather I will stay knocked out and even if I did wake up, I'd not be silly enough to look behind curtain number one.

WRONGO










I'd like to say that I'm confident and that I'm perfectly okay with this procedure, but I'd be lying. I hated having to be awake while I was having my wisdom teeth out, much less this. The reason for the patient being awake is to be able to give responses.

Perhaps when I was fourteen, they didn't need my responses or rather they didn't think a child was able to do so. But I really think I prefer to be knocked out despite anesthesia not being necessarily always safe either.

I'm more anxious then I've been about the thought of this procedure in a while and although I'm trying not to let this fear overcome me, I can't help but be a little nervous. I'm praying that the people who said would be there for me, do come through. As much as I have this new found independence, right now, I'm kind of a pool worries.

Trying to keep my held high.
And trying out some recipes.

I did make southwestern ratatouille, which I would show a picture of but, unfortunately it's not loading. Its made of all veggies and heart healthy. It's made of tomato's, zucchini's, eggplant, peppers, onions and some spices like the chili powder to give it a little kick. I added some pasta to make it a little more wholesome. It was kind of bland but overall, pretty good. The recipe just only needed some more cheese in my opinion.

Hoping for some Christmas Miracles before Christmas.

Jess  

Time for a Change

I realize I haven't written here in months.. Mostly because when the tough got going, it was kinda too much. I initially started this blog to help me cope with everything that is going on with my health, but I've begun to realize my inner strength isn't what it used to be. Between doctors and many tests, misdiagnoses back to concluding with the same diseases, I feel like the last few months have been an uphill battle with my health. I am finally going to get more answers whether I need a defibrillator or if I need heart surgery to correct an obstruction I have.

Its all in due time though. I think the biggest thing is, I've literally let my health control me for the past few months. Now, I know for anyone whose had health problems, it takes time to deal with... but I don't think I've ever let myself stop ..living. I feel as though a depression of  not being able to cope with my life has stopped me from being the ambitious, goal driven woman I once was.  I also realize that while I will always have the support of those who love me, its taken a toll on them too and in that sense, that really makes me sad. When my health didn't bother me, it didn't bother anyone else either. But living normally hasn't quite been a possibility within the last few months.

I never used to be so dependent on those around me and while it's okay for me to lean on people, I used to have this inner strength that anyone who knew me, knew that regardless of the circumstances I faced, I somehow always seemed to overcome it. The last few months, that really hasn't been true. I let my life spiral out of control and lost the ambition to begin again.

Disease won. I gave up.

It was never my intention to let it get as bad as it did, but it certainly has made my life a living hell. I'm no longer as confident in myself as I once was and it took through college to gain at its highest point. It's been a rough year full of deaths, sorrows, disease, and almost losing the person I hold closest to me to make me realize that I can no longer put up with this lifestyle of surrendering to disease.

I want to fight. Fight for the life that I deserve and fight for those around me who have given me support all these past months. I have the inner-strength and will to do whatever I can to become healthy, mentally and physically stronger, as well be the independent person I strived to, once upon, be. I have goals in my life that will be accomplished and I'll be damned if I let my health or anyone else for that matter, stop me. I've never let it stop me before and after a week of watching someone close to me be, be hospitalized for CHF, I realized sitting on a couch and moping about my life isn't going get me anywhere. In fact, that's part of how that person got into the hospital. He threw in the white flag when he should have kept fighting. Life is precious and every person who is in it, makes me want to say, they're my reason for getting up and living. My once lost ambitions have regained priority in my life and I don't think it will ever leave again.  

I'll end with this, as cheesy as it is, (because after all, I am cheesy) from the movie New Years Eve - "Sometimes it feels like there are so many things we can't control, earthquakes, floods, reality shows. But it's important to remember the things we can, like forgiveness, second chances, fresh starts. Because the one thing that turns the world from a lonely place to a beautiful place, is love."

Whether you love yourself, your family, your friends, your significant other, the air you breathe, or just plain love living life, keep doing it. Find your reason to live. Regardless of your circumstances, believe one day it will get better.

I may have been lost for the last six months, but I can honestly say, the spark of wanting to live, has never felt stronger and my ambition to make something out of my life, has never been greater.

 Don't forget, to just take time to appreciate what's in front of you. It may be the season to give but it's also the season to be thankful for all that life has given you.

<3
Jess 

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

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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