Friday, December 27, 2013

Heart Attack Symptoms and Clotting - OH MY!

I hope everyone had a Merry Christmas and a Happy Holiday, in case you don't celebrate.

Over the weekend, I thought I was having a heart attack. My left arm pained, I had shortness of breath, pressure in the chest, nausea, and soon enough numbness in my left arm. It was one of the scariest moments of my life. All I could think was, could I really be having a heart attack?

I decided though I could take an aspirin, after surgery and especially with those symptoms, I shouldn't fool around. I went to the ED and they ran a chest xray, ct scan, ekg, and gave me aspirin. They didn't think I had a heart attack, but were still trying to rule out a stroke. After talking to a few neurologist, they didn't believe I had a stroke either. They did admit me though.

Good for insurance at least! However, no bed until 730 in the morning?! What a night! Barely any sleep and nothing much done for me aside from some medication. Next time I might take my chances with aspirin... Although, I will say I truly believe despite the lack of diagnosis and the mystery around my symptoms,  it's still good that I went.

At the risk of sounding like a broken record, I will say this: I really believe that whenever someone is having symptoms of a heart attack or stoke, you cannot risk it. I hate hospitals,  hate needles, and especially hate blood now. However, my life is worth more than the temporary torment of being in the hospital. So is anyone else's.

Extra big needle for this IV - Can we say PAINFUL!
Needless to say, I'm making an appointment with my cardiologist.

My dad had his biopsy yesterday and is still bleeding today. I've redone his gauze five times, not including the nurse who visited and changed it this morning as well. It's not profusely coming out, just enough to scare me and the rest of my family. I guess the term oozing is what his Newark nurse has suggested it to be. I hate blood and I sometimes feel like I can pass out from dealing with it, but I'm trying to do all I can while taking care of him.

I think the conclusion I've come to from him continuously bleeding, is he needs to stop the blood thinners even earlier in the week and he needs a nurse who will hold his wound longer to clot it. This sadly, is not the first time he's come home and I've had to re-bandage him.


I'm currently trying ice to closes the blood vessels but if it doesn't stop, it's off to Newark tomorrow morning to get the area stitched.

Despite all the hiccups this week, I say still have a lot to be thankful for. My dad might be bleeding but, his biopsy came up as a grade zero, which is even better than a 1A.

A quote that will keep you motivated:
Everything is okay in the end, if it's not okay, it's not the end.

<3
Jess

Tuesday, December 17, 2013

Spicy Spinach Lasagna

It's been a little hectic with the Christmas holiday coming and it seems like it's always harder to have time to eat a proper meal. Let's face it, the holiday is expensive enough without having to spend more money eating out. I found this spinach lasagna recipe and tweaked it a bit to what I already had in the fridge. Less money spent if you use what you already have, right?!

Baking Time: 45 minutes

You'll need:
1 bag of spinach
15 or 16 oz of ricotta cheese (part skim)
1 egg
1 tsp or more crushed red pepper (I added a full tbs)
Some black pepper
1/2 cup of low fat mixed cheese or mozzarella 
1 cup of tomato sauce, low sodium if you have it
8 ounces of whole wheat or regular lasagna noodles




Set your oven to 350 degrees and put a pot to boil and add your lasagna noodles. Start mixing together the spinach, ricotta cheese, egg, crushed red pepper, and black pepper. If you can stand the heat, add more red crushed pepper. It's been proven that if you eat something spicy daily, your metabolism will speed up. Don't forget, if you're a heart transplant patient or helping one, make sure you wash the spinach in vinegar first and rinse under cold water before adding any other ingredients!


Soon enough you're ready to spray your baking dish with cooking spray and start layering your noodles. Add your mix above it and some more noodles above that. Finally add your sauce and your cheese. Like I said, I tweaked this recipe for the items I already had instead of going to buy more ingredients.

Put your lasagna in the oven for 45 to 50 minutes and you're ready to eat!
 

Hope you like it and have plenty more money with using the ingredients you already have!
Don't forget to take a moment and enjoy the season!
<3
Jess

Friday, December 6, 2013

Nine Month's Post Open Heart Surgery


Yesterday was my nine month anniversary since I had my operation. It's amazing how time flies. I really can't believe that it's been that long! It seems like just yesterday that I was waking up and going to the hospital. I remember the hugs and kisses, and the smile I had plastered on my face as I walked through the waiting room and into the operating room.

While I don't even remember the anesthesiologist name or those who assisted him, I do remember that if it had not been for this British Asian doctor, the fear that I was hiding, would have been very much present. One of the last things I remember saying to him before I fell under, was do not let me wake up.

I didn't wake up during surgery. And looking back now, nine months later, it truly is remarkable how much I have overcome and how much I have personally been able to achieve.

With being the primary caretaker of my father right now, I am reminded of how much I wanted freedom after surgery. You're pretty much confined to your house and you rely heavily on those around you to give you any relief at all from your isolation.

As much as I was an emotional roller coaster from just having so much to recover with, I can't imagine what an emotional roller coaster my dad has been on with steroids. After talking to a few people who not only have had surgery on their heart but, also in other areas, one thing has become very apparent that we all have in common -  that is, we all are living with a prominent battle in our heads of what we're feeling on a daily basis.

That was certainly something pre-op did not prep me on. The emotional ups and downs you feel post surgery are more intense than I could have ever imagined. I remember one night just yelling at my poor mom because of how much I couldn't take living in my house anymore. All because of the lack of freedom and for that moment in time, I did not see my future of a better health. Rather, I just had the one day at a time mentality. I wish on that day in particular, I did look ahead. Many other days, I certainly did, just not that one.

Those weeks following the near month stay in the hospital make me realize now how much it was a struggle to sit still. I wanted so much more out of my life that it was hard to realize, it was just a brief chapter in my life that I had to be home.

I am reminded of these thoughts once more as some days I struggle with the frustration of a recovering father.

A brief moment in time of my young life, though sometimes frustrating, it is a life full of love, happiness, and health. My friends and family have taught me despite struggle, life will move forward. Happy 9 months to me and happy 1 month and a few days to my dad!


As Dori from Finding Nemo said "Just keep swimming."

<3
Jess

Tuesday, December 3, 2013

Traveling Back In Time

Today seems like it's been a run around kind of day between going to work, taking my dad to the doctor, and just running some errands. Days like this with my dad being a little frustrating, make me want to take a vacation far away. In my 23 years, I've been lucky enough to have traveled a great deal despite having enough medical conditions.

My healthy tips for traveling, especially with a heart condition include:

- Train! I can't stress that enough (the more you do, the easier the transition is)
- Plan an itinerary, that way if you can't get to everything, you can at least narrow down the list to what you want to see the most
- Over pack medications, especially if you're abroad
- Take items you can throw away at the end of the trip (even shoes)
-  Use a bag with wheels, your body will thank you for it later
- Bring a bottle that can hold water and stay hydrated! (though make sure you know what places allow you to drink from the sink or if it needs to be boiled)
- Make sure you get your protein in! (If you're walking all day, you can't just survive on carbs)
- Bring that sunscreen (I came back to the states a whole different color after Italy)

When I visited Italy, I can honestly say it was an experience of a lifetime. While  I just scratched the surface of Rome on my five week study abroad program, there are a number of museums and places that are must sees!

The Capitoline Museum is a prime example of which people might be reluctant to get to or even think it isn't worth it, but if you get the chance to visit, you won't be sorry. You have to walk up more stairs than Michelangelo ever intended for people. (originally it was meant for horses to climb)
If you're an art history/history person like me, there truly is nowhere like Rome to see the transcendence of an empire for what it once was, to what the city is today.

Here is just a taste of Capitoline Museum and the views of what this hill offers.

Constantine
Roof Museum cafe
There's a "she wolf" in the closet..

Part of Michelangelo's design

Marcus Aurelius
Baby Geta
While walking within this building, you really have a lot of scenery to take in. And also, a lot of stairs. I recall thinking if I can survive this many stairs leading up to the museum, the impossible suddenly has become possible. I certainly had many major milestones on this trip, the big one - actually surviving. Climbing Michelangelo's design makes me look back on that first full day of my trip and really wonder how I survived without training myself.

This is only a small part of my travels and I hope to share more. It's funny looking back on it now how my health always seemed to be struggle, but yet I still pursued traveling despite not being 100%. I wouldn't suggest this to everyone and I know I certainly checked in with my doctor to make sure I was enough good health to go anywhere.. (though HCM just came up out of no where)

Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from safe harbor. Catch the trade winds in your sails.
Explore. Dream. Discover. 
~ Mark Twain ~

~ Happy Travels ~ 

<3
Jess

Monday, December 2, 2013

Life Doesn't Stop Friendship

While this weekend was extremely busy visiting with family, I also made time to see some of my good friends. As the holiday season is in full swing, I realize how lucky I am to have certain people in my life. Even more so this year, my friends have felt like family to me.

When life makes it hard to live, it's nice to know you always have someone to lean on. While juggling being primary caretaker of my father, I am reassured by these friends that though life isn't always easy, no life worth living, comes without some struggles. I firmly believe part of your heart health and overall emotional health, comes with taking time to be with people you can de-stress with and even just taking a moment to yourself. Lets face it, holiday's make life a bit stressful, and it's nice to have a time to kick back and relax.

Grab that glass of red wine and take a moment to yourself. Your heart and head will thank you.




Now for some heart healthy food!
I made chickpea masala for a low sodium diet and considering I've just been gaining my cooking skills, this was a pretty good meal!



It has:
- 1 can of chickpeas
- 1 can of string beans
- onion
- sugar
- olive oil
- low sodium diced tomatoes
- curry powder
- coconut milk
- cumin seeds
- turmeric

While I didn't think this meal would be filling, it surprisingly was. For being heart healthy, it was pretty good. I'm glad the more my dad and I are cooking, the more we're finding some good recipes and altering them to our needs. We're getting creative in the kitchen and I never even thought I'd be in the kitchen! Being healthy isn't easy, but I think the trick is to just start buying the right stuff from the start. After going to the supermarket about four times in the same week, mind you not even for thanksgiving food items, it's become apparent to me that everything in the fridge has suddenly turned healthy. Get rid of that junk food and replace it with healthy snacks.

Yes, that yoplait commercial about swapping comes to mind and it really is true! Not about tricking your mom into liking one boyfriend over the other, rather, switching out what you normally eat. I find when I'm not surrounded by twenty different pies of choice to eat, I make the healthy decision to have the fruit, nuts, and milk as a snack. Get RID OF THAT JUNK FOOD! (Harder to do when I don't have full control over the shopping list but, by not having it in the house, the desire for it isn't there nearly as much) That really does have to be step one in healthy eating habits.

And while you're at it, take your heart healthy exercise to an extreme. No, I don't mean shopping in the mall on black Friday (though that will certainly give your cardio for like a month) or any evening in December, I'd suggest visiting New York City. While it's chaotic as hell, no other city does Christmas quite like New York. I visited over the weekend and even though it was still November, it really put me in the mood for starting to celebrate and decorate for Christmas.

 
I'll leave you with this.

Some see the Glass as half full, some as half empty. Some of us just grab the thing and Drink.

A healthy heart and healthy lifestyle can start at any point. Why not start today no matter the circumstances?

<3
Jess

Friday, November 29, 2013

Gird your Loins

Enough food to feed a small army
One holiday down and another to go!  I cannot believe tomorrow is the last day of November! And one of my closest friends birthdays. This end of the month starts what I feel like the most festive part of the year but, also the most stressful.

I'm already making mental lists of all the stuff I have to get done and that list just keeps on expanding. Finding a time to be healthy might be difficult. However, I'm going to keep on trying to eat healthy and exercise. At the very least, my dad and me will still be finding a time every day to walk. As much as I'm a twenty something year old girl, I think I will be acting as a senior citizen when taking my dad to the mall during the really cold days.
Ya never know what you'll find on your walks.

 In between avoiding or at the very least, not eating as many holiday treats, I'll be trying to eat healthy. One recipe that I made is easy, fast, tasty, filling, and even healthy! It's a chicken wrap and while that might not sound so appealing, it really isn't bad.



Get some whole wheat pita bread, lettuce, tomato, spinach leaves, white meat chicken, and some baba ganoush. You would think that the baba ganoush has too much sodium but, the trick is just to put a little on. It gives it a great bite and it's simple to make when you're on the go.

As the holiday madness begins, I say to especially those who are going black Friday shopping - Gird your Loins!


Not really sure if this stuff works, but it's interesting to see anywhere you look, something is always advertising a healthy heart!

Jess

Wednesday, November 27, 2013

Battling Biopsy Wait

Official 2nd biopsy for my dad happened on Monday and boy was it a long day! We got to the hospital around 1030 AM and stayed until 5 PM. It wasn't even the biopsy that took that amount of time, rather, it was the amount of patients that were ahead of my dad. We also can't forget that the staff need to eat lunch.

I have no problem with them eating, however, it would have been nice for these doctors or any of the medical staff for that matter, to give us a better estimate on time. They say it could be a six hour day but the sad part of that is, we certainly weren't actually doing anything for majority of it. As much as that sounds simple,  both of us were exhausted by the end of it.

I'm happy to say though, he's at a 1 A status, which is the highest he can have for the biopsy. 1 A means he's not rejecting the heart and while we can breathe a little easier this holiday week, rejection can happen at anytime. That's why he's checked for the first 6 weeks, every week. After that, it becomes every other week. Then, every month. Eventually it will become every three months.

Forget about bringing a book to read, my dad bought thank you chocolate for what seemed like the entire hospital! I think for me, that was the most exhausting part of the day. I had so many pounds of chocolate to carry, I should have had a shopping cart! I was the mini-chocolate santa clause for the hospital staff.

But it's people like those nurses and doctors and any medical staff that helped my dad, that really make grateful this holiday season. Every penny they make, they certainly earn it. My fathers surgeon Dr. Camacho and my surgeon Dr. Bacha, make me eternally thankful for people who sacrifice so much for their patients. For every nurse and doctor who put in more time then they should, I really don't know how these miracle workers can ever be repaid.

While my dad and I were waiting for his biopsy, we met so many other patients of the same status, that is, having biopsies on their transplants as well. As I sat in this tiny waiting room that looked rather like a mishmash of furniture from all over the hospital, we were surrounded with other living proof people who have survived hardship and overcome it.

A woman who was had an LVAT put in for over a year, finally was given a heart a few few short days after my dad. Another gentleman and his newlywed wife sat with a similar story to my dad's of hypertrophic cardiomyopathy. They didn't even get to enjoy their first year together and this upcoming year, they can finally celebrate and be a true testimony of the vows through sickness and in health.

Another man who I think I will ultimately remember the most, seemed almost like a scrooge. He didn't speak much, but his personal nurse did. Didn't really get much of his personal story other than he's quite rich. Aside from his personal nurse, he has a personal physical therapist, and three physicians at his beck and call. Extremely private and seemingly snobbish, I felt as though he wasn't as grateful for the miracle he had been given sitting with his nose held high. However, after he came back from his biopsy, he agreed with the conversation everyone was saying, which was every person in that room had a lot to be thankful for. He wished everyone a happy thanksgiving and I could finally start to believe that he did have a transplanted heart. And a heart in general.

While we remember being thankful this holiday season though, I'm also hoping for those who still haven't received their hearts yet. The last couple I met while my dad was in his biopsy, is why I'm even more grateful this season for the gift my family has been given. This couple is still waiting for a heart and the man has been put into ventricular fibrillation a few times now. He seems to be constantly shocked by his defibrillator. He's finally being admitted to the hospital which will bump him up on the list, but goodness,  for his sake, I really hope he has the transplant soon. I could see the grayish coloring in his skin that my dad once had. Watching my dad for months keep slipping faster and faster into an inevitable near death state, this other man is on the same path. I can only hope that this man and his wife will keep on fighting and believing that life will get better.

I can't help but keep on being thankful for all that my dad and my family as a whole, has been through and overcome.

Life certainly has never felt so sweet.

Happy Thanksgiving and keep on being thankful for even the little things in life.

The Indiana Jones of our family, finding the holy grail of life, a New HEART!

Jess

Sunday, November 24, 2013

Gobble Up Some Healthy Treats

With the holiday's and winter temperatures approaching, it seems like just the right time to start making some good food and enjoying time with family and friends. As always, life is never dull with recovering heart transplant patient.

The preparation work for food with a heart transplant patient is even more tedious compared to a regular diet. While I was at Columbia Presbyterian after my own surgery, I talked to an older man who had been through so much in his life with his heart. He had bypass surgery, a transplant, and was in the hospital recovering from his second transplant!

At the time, it wasn't even a thought that my dad would need a full on transplant. The December before he had been diagnosed with Congestive Heart Failure but, to me, my dad was superman. His health might have changed, but he never complained.

This man in the hospital that I had only met for what seems like a brief moment in time, has stuck with me since. I remember him telling me how he some how got a second chance at life with this heart. He severely screwed up the first transplant with poor diet and lack of exercise.

I look at my dad who just by chance, was given a heart and a completely new lease on life. How could one person not take care of this second chance?  And still receive a third chance after that? He must either be really blessed or have amazing connections.

Though my dad may be pushing himself too much, I certainly feel like he's embracing this gift to the best of his ability. Life only gives us so many chances and we ultimately choose the way it's lived. For the sake of the man in the hospital, I really hope he stays true to his word and starts taking advantage of living a healthy lifestyle.

In his defense though,  I can certainly understand the frustration there is with a low sodium diet and needing the extra preparation time for anything with vegetables or fruits. If you know of anybody with a heart transplant or maybe even transplants in general, (not sure if it's a rule of thumb) you have to wash each individual piece of vegetables or fruit in vinegar water. Now this might be an extra step and not that big of a deal, however, take a head of lettuce and it makes this a little more tedious.

While I was recovering,  I was lucky enough to have my sister or mom who would prepare my food for me.  Until my dad was out of the hospital,  I really haven't put my full effort into learning healthy cooking habits. That takes time and practice. I now have both and a greater need to learn.

This week I did a number of different healthy meals that were pretty tasty. They say breakfast is the most important meal of the day; well, the breakfast I made was pretty good.

Egg whites, which if you get them in shop rite or buy in bulk at Costco, Sams Club, or BJ's it's not as much money.

Cheese is wonderful. Pizza, pasta, anything Italian and it will be made in my house regularly.  However, the sodium levels are pretty high, so pick your cheese wisely!
The good cheese for you:
- swiss
- low fat cottage cheese
- mozzarella
- low fat ricotta

High sodium Cheese:
- feta
- blue
- parmesan The MSG of Cheese for Italian food
- gouda

Mix egg whites, some swiss, and spinach,  you've got one really good  breakfast.



Being in a holiday mood, I also decided to go a little turkey cupcake crazy. I did it with two kinds of mixes. Both were a Halloween ready made cakes and all you needed to add were a few ingredients. One was with oil, water, and eggs, the other with seltzer water. Seltzer water is supposed be healthier and less calories. Although, what I added to decorate, didn't exactly fulfill that healthy standard, they were very festive.

The ones with seltzer water ultimately tasted like cake batter. Yes, they were cooked. Just didn't have that golden color to tell that they were finished.








For the healthiest choices in decorations, I would say buy dark chocolate kisses and sugar free frosting. Add food coloring and you're in business! Those circular candies you see are actually reese's pieces. Get them at five below or target and they're pretty cheap. If you are diabetic or simply trying to watch weight, aren't we all, I would say make them and give these treats away asap! I certainly did. I do have some for myself, but it's only a treat for every once in a while.

In between baking and filling my dining room table to full capacity of decorations and cupcakes, I also made potato leek soup. Since my dad and I are both trying to maintain that low sodium diet, we used low sodium chicken broth. It's a pretty easy recipe you can find which was in the Joy of Cooking book but, added in with a healthier twist. 

As I said earlier, the cleaning process of any fruit or vegetable takes a little longer however, it needs to be done. I cut up the leeks and scrubbed them in vinegar water. I then added them into unsalted butter and let it turn into a translucent color. After I added the rest of the peeled potato's (washed of course) and the broth. Brought it to a boil and then to a simmer. After I pureed it and we have soup galore! For those who need a little more salt, add some saltine crackers.


Cooking is fun.. and sometimes a little messy!

 If you make any of these recipes, Enjoy! Everything was tasty! 
I'll end with this quote
It's not the years in your life that count. It's the life in your years!
Make it count!

<3
Jess

Wednesday, November 20, 2013

Living a Healthy Life

I decided to restart this blog, and I mean, really restart it. I haven't written since May and now its about to be December. I have accomplished so much and feel I will keep on doing so in the future. I have walked nine miles on the Appalachian trail and hiked many other trails since. I have eaten healthy ... and not so healthy. I'm still within the range of which I weighed before surgery but the muscle I once had, is no longer muscle. Sadly, it's now flabby and I'll be working on that! Either to maintain or hopefully lose it. Fingers crossed. (the holidays maybe jolly however, it certainly puts a damper on my waistline! HAVE TO LEARN HOW TO SAY NO!)
As I suspect for many of my fellow heart patients, or even those who are non-heart disease patients, keeping and maintaining, or even starting a balanced diet and exercise routine is extremely hard to do! And if you don't have the energy or time to put effort in your health, your health loses. In the battle between life and health, regretfully, many of our priorities have become everything but our health. As the holiday season approaches, money and time, especially makes it hard for some of us to put our health first. Plenty of us wait until the New Year to make our annual resolutions, many of which are the same from the year previously.

For many of us who do have heart disease, it's rough to actually bring ourselves to even begin the process of gaining a healthy lifestyle. Even after heart surgery, (the big time surgery!) staying motivated while life steps in, isn't always easy. It takes an eye opening awareness of what life can be if you're healthy. 

For one family member, that awareness just turned into reality.

In previous posts, I always mentioned another family member had suffered from the heart disease Hypertrophic Cardiomyopathy. That family member is my father. He has been diagnosed for twenty something years with this same disease. My grandmother, his mother, and my uncle, his brother, died of this disease. It's a disease that is unstoppable and only using beta blockers to slow the heart, is there any slight relief from this disease. Let me refresh you on this disease. The heart becomes enlarged and in doing so, it does not allow the heart to pump as easily. By treating it with beta-blockers, slowing the heart beat allows the heart to not work as hard.  This can also be treated with a defibrillator, which eventually will be my next step in treatment for my own heart health. (Hopefully not anytime soon, I'm good without having any more surgery for a long, long, long time) Three of my cousins, all male, have HCM and another male cousin has a heart murmur.  (Can we say hereditary problems?)

My father's health over the past year or so has declined at a rapid pace to say the least. He constantly had water weight and regardless of taking lasix, it was a constant struggle to get rid of the water. He was on a low sodium diet and anytime he ate even the slightest food high in sodium, the water would gain to an outrageous level. When I had my own surgery in March, he just started the process of joining a Congestive Heart Failure group associated with Newark Beth Israel Hospital. He was put on plavix in the early fall. It was a constant IV drip to prevent heart attack, stroke, and any other related heart problems. About a month or so ago, he stopped taking it for a teeth cleaning, (this medicine is a blood thinner) and in the day and a half time period he stopped the medication, he had went in ventricular fibrillation and was already in constant atrial fibrillation. The doctors were going to manually shock his heart back into rhythm only to find many, and I mean many, blood clots all in aorta. The doctor who was about to shock him was fearful of what he just saw, much less my dad! He was given a blood thinner medicine to make the blood clots disappear but, both his body and the medicine he was given, could only take so much more.

Finally in September, he was added to the transplant list and got the scariest phone call he'd ever received on Halloween. He got a heart! I wasn't even at home when he got the call! It was incredible. Only two months after being put on the list, he was already getting a heart. When this disease takes over, it really takes a quick turn and I don't think anything or anyone can stop it. Earlier that day, the doctors increased his plavix and it certainly made a difference on the list I'm pretty sure. He became as close to a 1A (inpatient) as he could being a 1B priority level on the transplant list.

That was the longest night of my families life. It was interesting to be on the other side of it, rather, not the one under the knife. When I walked in, I felt more prepared compared to my dad, that's for sure! I walked in kind of being the cheery, light hearted one of my group. My mom and sister were crying and I was kinda in la la land going into my surgery. Looking back, I'm glad I went in with a smile on my face.

In my dad's case too, I tried to be the upbeat one. So many things could have gone wrong, and while the rest of my family was crying and sobbing, I tried to make it into a joke, telling my dad before he went into the OR, "Soon enough, you'll have the same scar as me!"

It wasn't until after the surgery, when we got the phone call in the waiting room that he was out, did I finally let the tears flow.  I just needed one big cry, and I finally let it all sink in.



Three weeks today, and he's out of the hospital and walking close to a mile a day! He's pushing himself, no doubt about it. I'm trying to tell him to take it easy, but it's like talking to a brick wall. I will admit, the steroids have certainly changed him too. His mood can snap any second. One minute he's completely happy, and the next, pissed. It's a little scary taking care of him but, I know the real him is in there somewhere.

For those who celebrate Thanksgiving, or even for those who don't, remember to be thankful for the things you do have and not harp on the things you don't have. I have a lot to be grateful for this year, with my health, and hopefully a progressively good health of my father. I have a roof over my head, food in my belly, and family and friends who have stuck with me through the hardest times.

Remember to take a minute everyday, and just be grateful for something, anything in your life. Sometimes life is hard, no one can argue that. However, we all have something to be thankful for, we just need a reminder to see our problems, whether big or small, life can always be worse.

I'll leave you with this comic. If you never read comics, or you're just boring and read the political cartoons, you don't know what you're missing out on!
I'd say this Pickles cartoon hit it pretty damn close.

Until next time,
<3
Jess

Saturday, May 18, 2013

Cheerleader of My Own Life

So.. It's been forever since I've written in here.
Reason #1: I was in the hospital for a month.
Reason #2: It's been hard to get through some days of recovery for a number of reasons. Reality kicked in hardcore.

I officially have had my heart cut open.. both literally and emotionally. I have the scar to prove it. And a few more to prove open heart surgery was not rainbows and sunshine. To put it simply, my month in the hospital was a month from HELL.

I was constantly sleeping, nauseous, or in pain.

I should first explain what I had corrected.. which to tell you the truth, I kind of wish I had asked if I could have had the surgery recorded... would have been an out of body experience to watch that but, I think it would have been nicer to have every detail of what was going on, explained.

My reality check of living through what I did
What I had corrected:
Double Chambered Right Ventricle Repair
VSD closure (murmur)
Division of Vascular Ring
Left SVC to Right Atrium Conduit

In previous posts, I called Double Chambered Right Ventricle, Double Outlet. My New Jersey cardiologist, and I find, older doctors, seem to overlap the terms without much differentiation. From my understanding, it's a bundle of muscle fibers and to correct it, at least with the additional muscle from my Hypertorpic Cardiomyopathy, they took off a good amount of muscle.  Apparently this procedure could not even be done twenty years ago. Thank God for the technology advancements and Dr. Bacha. I think he is a miracle worker with how he can imagine the heart prior to surgery and whom has amazingly skilled hands to perform such intense surgeries.

The VSD murmur is a lot easier to correct by closing the murmur and no longer allowing back-flow of blood.  From what I understand, the Vascular Ring correction was a simple snip. If you've ever seen it, the top of the heart, the aorta, has extra tissue and developed a ring around the esophagus. This also caused my aorta to be towards the right and so, that was corrected as well.

The last thing, the Left SVC to Right Atrium Conduit, I didn't even know I had until the day of pre-op. They had me do a bubble echocardiogram and stuck me three times before finally finding a vein (that would be the first of many needles I'd be stuck with in me over the next month). From what the doctor told me, any time something was injected into my left arm, instead of it going to the right artery through the lungs, it went straight to my heart, and potentially, straight to my brain. Who knew?!

Going in was.. well nerve wrecking. I was lucky enough to not only have my parents and sister come, but one of my best friends, Sam, come as well. Let me put it this way, in times of crisis and life or death situations, you really do find out who your true friends are (Cliche I know). All I can say is, for the most part, I chose my friends pretty damn well. Some people didn't bother and to which I say, you couldn't handle it and I really became my own hero. The people I thought would have been there for me, weren't. I might have been abandoned by those people, but I truly was lucky for all those wonderful friends and family who made me feel loved and not alone during my time of need. I have been blessed with some amazing people in my life, that's for sure.

Sam and me
After a week in the hospital, I was discharged. Unknown to me, when I was released, my pancreas was acting up. My doctor even came in to ask if I wanted to stay, didn't give a reason, but I was like "Get me The HELL OUTTA HERE." If only that was the worst of it. The day after I was released, I noticed my stomach was pretty distended on my left side. My left side has my only kidney. Back to the hospital I went.

I was admitted the following day for pancreatitis. The day after, I was discharged along with being starved. A few days later, I had to go back to the hospital because I was having an echo done to see if the water went down in my heart. At the time, I was already feeling like I was short of breath and not nearly as much energy as I had when I did leave the hospital the first time.

My doctor was convinced I could have a syringe method of literally sucking the liquid out of my heart. This is called pericardiocentesis. I was literally in the cath lab all prepped to go, but as always, my health is never that simple. They did an ultrasound. The ultrasound showed that I had water around the heart, but not in an area in which the surgeon could reach it. If he attempted, I could have gone into shock. Kind of ridiculous that I was moments away from possibly having that happen. I was admitted and my doctor decided, that water still needed to come out. I had the window procedure done instead.

It took four days to actually get into surgery but, I had a surgeon who had performed surgery on President Clinton. Pretty damn cool. I was starved each day waiting, hoping, I would get in. But I was not able to and the day before my possible surgery.. I finally cracked.

I'm not really ashamed of it, but my goodness, when the surgeons came in to tell me what was going to happen and the fact that I was by myself, I kind of just lost it. I wanted to know why, always, why my body could not just do things simply and I would be done with all my health problems. Nothing has ever been simple though. My doctor, who I should say, was there with me practically every day I was in the hospital, was amazing. He came in to talk to me about what the surgeons had said and just as he was leaving, I guess I must have had a look on my face, he turned around and came back.

I hadn't cried at all, for any of what was going on in my life in the past month. That night, I just let go and cried to him. He sat next to me, put his arm around me and just listened. I could not believe that I had fallen apart in front of this man, who had been there through every step of the way, but barely knew me outside of being a patient, and simply acted as a friend. He did that throughout my stay, but this time, I can honestly say, he was more than just a doctor to me. These are the kinds of doctors everyone needs, and I was lucky enough to have Dr. Ginns as mine.

For someone who had only really known me for that month, he said something to me that I'll never forget,"You've been this cheerleader of your own life and strong for everyone else." I think he was surprised that I didn't fall apart with everything that was going on. Looking back on it now, I kind of am too. I might have been miserable, but I tried to put on a smile for those who watched me suffer. Though life was hell, I didn't want anyone to think I couldn't make it through this.

The last surgery was probably the most painful experience I've ever had to endure physically. The window procedure was a simple surgery; you deflate the left lung, cut two holes into the sac of the heart to allow the heart to be decompressed from the fluid, and insert a tube that wraps around the lung to an the area of drainage. The tube however, is very painful because any foreign object in the body, the body rejects. When I was woken up from the surgery, one of the assistant surgeons came in to check up on me.

He asked, "How are you feeling?"
I said, "Surprisingly pretty good"

Well.. he walked over to my drainage box that is connected to my tube. The tube, unbeknownst to me, had a blood clot in it. The fluid was being backed up. Well. IT WAS A TWIST AND RUN!

He literally walked over to my tube, saw the clot, didn't say a word to me, and twisted it to allow the clot to go down. I was in extreme pain. I don't think I've ever felt that kind of pain in my life. I was crying and screaming, and the doctor said it will go away, while he walks away. My sister, who is crying because I'm crying, runs out to get the nurse. They inject with some nice pain killers/knock me out cold.
Tube that was inside of me from window procedure
The following days, I was in pain and nauseous, more so than I had been during the previous weeks. Man. That was the hardest thing I had to endure. Open heart surgery seemed like cake compared to that.

Thankfully, after a few days I was released and had the tube removed. A whole month in the hospital between the two surgeries and I was home! No more finger sticks, blood tests, iv's, xrays, ultrasounds, echos, a burning hot ct, and finally over my nausea to eat.  

Its now been about two and half months from my first surgery, and a month and half since I've finally been home. I'm still recovering and working on bringing my strength back, but the pain isn't nearly as bad as it once was. The twenty pound weight that I thought I was wearing when I got out of the first surgery, is no longer there. I can turn on my side and sleep comfortably for the most part now (the scars of the second surgery make it uncomfortable at times). I can walk with ease and have even started walking on the treadmill again. I can't lift over ten pounds, but I'm okay with that (not exactly trying to become a body builder any time soon).

I've come back to all the people who love and care about me, and that is perhaps, the biggest thing that has given me hope over the last few months. People who didn't have to stick around, did. I can't say it enough, I really have been blessed with the friends and family I have in my life.
My older sister Jenn, who I wouldn't have been able to live through what I did without her.
Bio Buddy Bestie Annie :) Love this girl
Family who stick together
Jeanine and me - A true friend through it all
Here's a drink, or two.. or three ;) A drink to Life and Living it to the Fullest. Never taking for granted the people you love and care about. A drink to the people who stuck with me, no matter how hard life got and to the everlasting memories I have of those who made my days a little easier. 
Here's to moving forward and ending this one unforgettable chapter in my life.
To the new adventures I'm about to embark on!
No matter the disease, don't ever let it bring you down.
I'm living my life with a healing & continually growing enlarged heart.
Dear Life,
Bring. It. On!
<3 
Jess