HCM- The sucky-ass heart that I live with!

My name is Tawni. I’m 27 years old and I have HCM (as for right now, it’s non-obstructive). HCM stands for Hypertrophic Cardiomyopathy and is the thickening of the heart muscle. It occurs in 1 in 500, and it is more common than muscular dystrophy, cystic fibrosis, and AIDS in the United States. HCM is the most common identifiable cause of sudden death in young people and is the leading cause of death in competitive athletes according to USNews.com.

My mom has HOCM (which is obstructive, hence the O), my grandma, her mother, had HOCM also, and it is believed that my great-grandma also had HCM (but as technology wasn’t as great back then, this was never fully confirmed).  Grandma had received a heart transplant when I was 13 years old, but unfortunately, she rejected the heart as it was simply too strong for her body after years of living with a HCM heart.

As long as I can remember I’ve had the same symptoms as my mom, only not as intense. Shortness of breath, dizziness, severe head-rushes, and palpitations especially brought on by certain foods. I knew early on that I had HCM, it basically seemed inevitable.

My pediatric cardiologist, Dr.Something-or-other-Green, always said that I did not display signs of HCM, even though I told him about my symptoms. I’ve had echocardiograms every couple of years since my mom was officially diagnosed. When I went to Mom’s doctor, after I was 18 years old, he also said that I did not have HCM, and that my symptoms were induced by over consumption of caffeine. He was… let’s just say that he was not the sharpest tool in the shed. He also told my mom that symptoms of HCM were NOT aggravated by food, and that she was not as bad as she thought she was- it was all in her head.

That was pretty much the last straw. My dad and I made her find a new doctor, one that she and I could both go see. While we were looking, I had gone to my GP, Dr. O, who I’ve been seeing since I was 4 or so, and told him of the symptoms I was having. He advised that we find a new cardiologist, but in the meantime prescribed me Metaprolol, 25mg once a day. As for our new doctor, we landed on a doctor on the Ann Shutz Medical Campus of University of Colorado in Denver, a 45 minute to hour and a half drive (depending on I-25 and I-225 traffic) away from  where we are in Colorado Springs.

Three days before Christmas, in 2008, our new doctor took one look at my echo gram and said to me, “You have HCM” (like I didn’t already know this). He said that I should continue on the Metaprolol and therefore, nothing really changed. At least now I had validation for the way that I had been feeling for so long (oh, yay).

On my 21^st birthday, my mom had a septal myectomy done at the Cleveland Clinic by Dr. Harry Lever. It has done wonders for mom! She is like a new person compared to how bad her symptoms were before. She had asked Dr. Lever about me, and he said that he’d be interested in meeting with me.  When I was 22 I had an Cardiac MRI preformed, and we sent the test to Dr. Lever. He said that my HCM could be displaying in the papillary muscles, but he’d want to take a look at me first hand to say anything for sure.

Mom and I eventually got tired of driving to Denver for our appointments, and found a doctor here in the Springs. He is not necessarily an HCM expert, but he is pretty well versed in HCM, and even studied under Dr. Lever. Last week was my annual appointment/check-up. Nothing much has changed, but I did have one tiny weird episode a couple months ago where I lost part of my vision while I was exercising, and it returned to normal as soon as my heart rate came back down. So of course they want me to do a stress echo+, and wear a halter for 24 hours. I am actually kind of excited to do the stress echo, as I’ve never had one done, and I’ll be interested to see what (if) it shows anything.  I think wearing a halter is a waste of time and money (on my behalf) as halters have NEVER shown anything for me, so I am not excited about that.

So people out there in blog land… I think I’ve decided what to make my blog about (finally- it only took 2 years or so)!

Read more about HCM at the links below:

Hypertrophic Cardiomyopathy

What is Hypertrophic Cardiomyopathy (HCM)?

Learn about hypertrophic cardiomyopathy

 

Grandma Aggie- My tribute

Hello Everyone!

So I didn’t post in February. I’ve already failed on my New Year’s resolution! Taking 3 classes and working 3 jobs (1 full time, 2 part times) has proven to take more of my time up than I thought it would. My mom asked me the other day if I have become one of those people who doesn’t know how to do nothing… In other words, if I must remain busy at all times. And to tell the truth, I was kind of stumped. But hey, at least I’m passing all my classes with As and Bs, and so far I haven’t gone crazy… So that’s something I suppose. I will try to be better about my postings, but today, I’m going to change it up a bit.

I learned yesterday that my great-grandmother passed away yesterday morning. She was 94 years old. She had had a stroke a couple of years back (maybe 5 years), and since then she hasn’t been able to communicate with us. Then about 2 years ago she had another stroke. This time it seemed to really take what was left of her. She didn’t seem to know any of us, even her own son (my grandpa, for those of you who aren’t good with family math). In her honor I wanted to share a few of the memories I had of Grandma Aggie.

For many years when I was growing up, my mom and I (and then when I got older and had to work and such, it became just my mom) would go to Grandma’s house every Wednesday afternoon and play games. We played Skip-Bo, Rummikub, Mexican Train, Phase 10 and occasionally Boggle. Mom and Grandma Aggie are some of the best word smiths that I’ve ever known, so they usually didn’t play Boggle with me as I didn’t stand a chance. I remember going to 7-11 before we went to her house and Mom would buy us all Slurpees, a giant pink-frosted sugar cookie and we would buy Grandma Aggie Nerds. She loved those sour candies, even though they would often choke her up.

When I was younger, she was also usually babysitting “the boys,” aka my cousins Josh and Zach. The boys and I would go down to her basement and create a restaurant, and before we’d leave Mom and Grandma would come down to the basement and eat the imaginary food that we had worked so hard to create. Grandma would always try to order something that we hadn’t put on the menu.

Grandma always had an artifact from her past to share. She once showed me a letter from the president (although I’m sorry to say I can’t tell you which one, just it was a pretty old letter. I think it was from the 1940s ish…) She showed me newspaper clippings of Teddy Roosevelt giving a speech, and told me that he was a very distant cousin of ours. She told me about her journey to London when she was just 19 years old. She had taken this huge trunk with her, which is now my coffee table. She told me about when Poppy (my grandpa) had broken his leg and was in wheelchair all summer.

Looking back I wish that I had absorbed it all. She had some great stories! At the holidays, Grandma Aggie was always responsible for the pies, and she made the best Pumpkin and Pecan Pies. She was great woman, who will be greatly missed! We are truly thankful for all the time we had with her, but we are also truly thankful that God took her home. She is in heaven now, and God has given her peace.

Rest in Peace, Grandma Aggie. I love you.

 

I don’t have time to sleep! P.S. GO BRONCOS!

Hello people of the world. Happy Friday! It’s Super Bowl weekend! Who’s excited? Who are you rooting for?

Am I the only one who can’t believe that it’s already almost February? The older I get, the faster time moves by me.

I actually found a study online that said that time is relevant to age. In other words the older you are the faster it feels like time is moving. I have a theory that this is because the more time that you have experienced, the more you have to reference it to. Let me explain. When you’re seven, a week seems like a very long time because you’ve only experienced 364 weeks. But when you’re forty, a week flies by  because you’ve experienced 2080 weeks in your life. Does this make sense to anyone else?

Alright enough with the Philosophy lesson.

So far I’ve failed on some of my resolutions. I haven’t wrote to my best friend or my nephew. I haven’t been doing 2-a-days at the gym(to be fair, I had a chest cold and you’re not supposed to work out when you are sick if it’s below the neck). I’ve been eating a lot of ice cream and cake, I haven’t decluttered…

So February 1^st I’m going to get back to my goals. Probably. Maybe I’ll make it the 3^rd. This is an extremely busy weekend. We are having a surprise party for my mom’s 50^th, I am working at my full time job today and my part time both Friday and Saturday night, I’m having a Super Bowl Party at my place (GO BRONCOS!!!) which inevitably means that I have to clean, and I have some massive studying to do.

What have I gotten myself into?

So I may have bitten off more than I can chew, but there’s not much I can do about it now. If anyone has figured out how to live without sleep, or maybe how to slow time down, please share your secrets!

Anywhoser…

Jan 27- Sliced Bread- You know the saying, “It’s the best thing since sliced bread!” What do you think is actually the best thing since sliced bread?

I’d have to say… men. But since they were probably around before sliced bread (someone came up with the idea) I guess I’d go with smartphones. My phone has replaced many things in my life: my alarm clock, camera, post it pad, planner, address book, phone book, Kindle and almost my computer! I don’t really remember how we lived before they came along. You mean we actually had to get directions to somewhere before we left the house. And when you had random questions like, “Who was the thirtieth president?” what did you do (No, I didn’t know. I had to Google it. It was Calvin Coolidge- don’t judge me!)?!

What would you say?

Hope everyone has a great weekend! Until next time…

GO BRONCOS! BEAT THE HAWKS!

On my journey to find my self

I’m going to try my hardest to make 2014 my best year ever. I have made a couple of New Year’s resolutions, some are pretty standard, some are strange. I’m going to do my best to make them all come true.

“God grant me the serenity
to accept the things I cannot change;
COURAGE to change the things I can; and wisdom to know the difference.”

This is going to be my mantra this year. I am going to change the things I can!

1. Lose 15lbs by Vegas (end of March)
2. Go to the gym a min of three time a week after that.
3. Eat healthier- less crap!
4. Maintain 1200-1500 Cal a day max
5. De-clutter my life
6. Send J, my nephew, some kind of mail once a month
7. Write a blog weekly.
8. Write my BFF in NC once a month
9. Reach out more to family- M, J and E, Aunt R, K
10. Pay off debt
11. Graduate from PPCC
12. Choose a major for my bachelor’s.
13. Get a new job!
14. Get a new car
15. No chocolate- exp 3-27
16. No alcohol- exp 3-27
17. No more cookies
18. Give up diet coke
19. Try to decide what I want to be when I grow up
20. Be more dedicated
21. Be more motivated
22. Be more driven
23. Respond to Texts!

So far, I can cross of a few including a big one: buy a new car! I am excited to have a car that is going to get better gas mileage and is barely older than my niece! I have caught a cold that is stuck in my chest, which has put a hamper on my gym schedule. I couldn’t do cardio right now even if I wanted to (I don’t want to because I don’t feel great) with the incessant coughing.
I think the hardest one may be to find a new job. I have heard that the market is still not very good. But, I am hoping with my graduation date now in my sites, I can use that to my advantage with my experience to get in somewhere.
This is going to be a tough semester! I can tell I am in for a lot of reading, and A LOT of writing. I’m not sure how dedicated I will be to this blog, but I am going to try. I saw a post to help with some daily writing ideas, so here are mine for the beginning of the year until now. I’m going to list my favorites, and skip ones I don’t like because I honestly can’t see myself writing here everyday… I might be lucky to make it here weekly!
– Where were you last night to bring in the new year?
I was at my aunt and uncle’s house surrounded by family and friends who love me! I prefer to stay in with a good chunk of family and friends to going out. It’s a rare occasion that we all get to be together for such a long period. We play spoons and Telestrations, 2 great games you can find the rules to here respectively: http://en.wikipedia.org/wiki/Spoons, http://telestrations.com/. They make for some great parties that I wouldn’t trade for anything.
Where was everyone else?
Jan 2 – Resolutions
We already covered my resolutions, the whole reason for starting this blog. What were some of your unique resolutions?
Jan 3- What’s the 11th item on your bucket list?
Well, I’ve never sat down and wrote out a bucket list. Maybe I will add that to the resolutions list… I know that before I die I definitely want to visit Germany. I am fascinated with that country; I’m sure that my heritage has a lot to do with it (my grandma immigrated here from there during WWII).
Do you have a bucket list?
Jan 4- Quotes: What’s your favorite quote? Why
My favorite quote is “You miss 100% of the shots you never take!” from Wayne Gretzky. It inspires me to take chances, whenever I’m in a tough spot I reflect on this and try to take bigger chances. I also saw a quote recently that said, “My brain used to think, ‘I probably shouldn’t say that,’ but now it thinks, ‘Oh, what the hell? Let’s see what happens!’” I think that they kind of go hand in hand.
Favorite quotes anyone?
Jan 10- 32 Flavors: Vanilla, Chocolate or something different
I personally am a Chocolate Chip Cookie Dough fan! If I could I would eat it everyday. But it’s on my list of no-nos until Vegas!
Jan 15- Polite company: “It’s never a good idea to discuss religion or politics with people you don’t really know.” Agree or disagree?

Religion and politics! Two of my favorite subjects. These two topics can rile up people like nothing else, but if you approach it with a calm demeanor, you can get some lovely insight into people. I always love to play devil’s advocate (not with religion) and try to get people a little ruffled. I think of both parties are in agreement to keep calm, it’s not bad. But it’s very easy to cross the line, and things will quickly become heated. So I would say, feel people out and if you can tell that they can’t handle it, back away slowly!

What do you all think?

Jan 16- Toot your own horn: Most of us are excellent at being self-deprecating. Tell your favorite thing about yourself.

My favorite thing about myself… hmm tough one. I think that I would have to say that I have pretty easy going personality. When things go wrong or go bad, I think that I have a pretty quick bounce back rate. Things happen, you have to deal with it and move on. You can’t dwell on it, and I seriously try not to.

Ok… Until next time… it may be in a week, maybe in two weeks, but no matter what, I promise to post before a month has passed!

30 day 10 pound Challenge

Ok people! Week one of the 30 day challenge. This is a little long, but I just wanted to share some information.
This isn’t going to be easy! 10 lbs in 30 days is about 2 lbs a week.
To lose one pound a week you need to create a 500 calorie deficit (Although some fitness sites will tell you otherwise, but for a simply calculation, I prefer this method of thinking. It worked for me last year when I lost 20 lbs, so I’m sticking with it). One pound is 3500 calories, devided by 7 days is 500 calories a day. SO to lose 2 pounds a week, you need to create a 1000 calorie deficit. I know that sounds like a lot! But your body naturally burns calories just by living your day to day life. You can find an estimate of what you burn in your daily life here, if your interested: http://preview.alturl.com/3vxaw.
According to this site, in my day to day life I burn approximately 1810 cal a day, just by living. To lose 2 lbs a week my net calories will need to be 810 cals. That doesn’t mean that is all I’m going to eat a day- that isn’t healthy. I’m going to shoot for 1300 cal day in food intake. This only gives me a 500 cal deficit, or a pound a week. So for the other pound, I’m going to have to burn it off at the gym- meaning a 500 cal work out is what I’m shooting for.
I think that this is all good to know/ figure out. It gives you goals to work toward. As of yesterday, I weighed 163.5, so my goal by September is 153.5! I am aiming for at least an hour of cardio everyday, but a minimum of 30 min if I just can’t make it through the whole hour. It’s going to be tough- I’d prefer to sit on my butt and watch TV! But with the support and accountability that we can all give each other, I believe we can all do it!!!
Good Luck, and I’ll check in again in a few days or next week!

PS if you want to check in with your weight, feel free. I find that telling people makes you more accountable to it. We’re all in this together, there is no judgment here- just support!

No Chocalte, Day 4:

Chocolate (Photo credit: EuroMagic)

Here is what you have missed so far:

April 1: I have decided to give up chocolate/ sugar and caffeine for the month of April. This is not an April Fools day joke. Unless I cheat tonight. Then it totally was.

April 2: No Chocolate, Day2: I’ve realized that chocolate is everywhere… It’s like it wants me to fail! So far I’ve made it through the temptation and a few minor withdrawal symptoms, but I can tell this is going to be tough. Wish me luck!

I still had a cup of coffee this morning. It was only Tuesday! I needed the boost.

April 4: I’ve made it this long. I can feel my willpower getting stronger. Now if I could just get my ass out of bed at 5am and start doing the 2-a-days again… I’d be in good shape (literally).  I didn’t have any coffee today either, and I felt much better then yesterday.

Last night I really wanted a chocolate egg… you know, the Hersey’s kind that only come around once a year for Easter. They are soooo good; it’s very difficult to pass them up. I did eat a granola bar this morning which had mini chocolate chips in it. But it was the kind made by Kashi and it only has 8g of sugar compared some of it’s competitors with upwards of 16g. So at least I cut some of that.

Monday, I went grocery shopping and really started looking at the ingredient lists of my favorite items and I was appalled. For example, I love to eat Greek Yogurt in the afternoon because it’s high in protein and gives me fuel for the gym. Some of my favorite ones had over 20g of sugar in them! I finally found a few with 12g, which I still consider high, but I will settle for that for the time being.

I realized that I had just bought creamer for my house. I may have some coffee this weekend, but I will try to resist soda.