MYBPC3=Good News

So we had some great news this past Friday. I will share with you but have to add a little background first. I'm attempting to do this while watching football so bear with me. I have explained in the past that Hypertrophic Cardiomyopathy is a genetic condition (most of the time) passed on through family members. If you can identify which genetic mutation you have then the rest of your family (present and future) can be tested for that mutation. So everyone can be ruled in or out for HCM. It is important to note that not everybody that has the mutation will express it with symptoms of HCM but one can still pass the gene on to their children. These children may then express it with HCM and possible instant death. Point being if you know the mutation you can rule people "in" or "out" which makes the course of action definite. The problem is that although science knows some of these genetic mutations there are invariably thousands more that they don't know of. So it's really a flip of the coin if the genetic test will amount to an answer.

According to our cardiologist at Mayo Clinic there was a 70% chance they would discover my genetic mutation with a blood test because of the shape of my septum. Kellie and I chose to see a genetic councilor while at Mayo with the decent odds of finding an answer. These tests are rarely covered my insurance and are quite expensive. Again this is where our luck took a real nice turn. One of the genetic testing companies was having a special that would cover the remaining expense of the test after we paid the balance of our deductible. LUCKY for us I had reached our deductible a loooooooong time ago. So the test was free. No brainer, right? Take more blood please! They told us we'd hear of results in 8-10 weeks.

So I forgot about the test until last Friday when I received a call from the genetic councilor at Mayo and she told me they had identified the genetic mutation associated with my HCM. For all you science nerds (my lovely wife included) the genetic mutation is MYBPC3. Yep wrap your brain around that fellas....if you google it (as I did) there are many scientific papers on the subject. Most of them seem to be written in Chinese but one of them did state it's the mutation that is associated with HCM in cats. I'm pretty sure that another paper will tell me it's also associated with people....at least I hope so. If not I got bigger problems than I thought!

Now we can rule in or out my entire family. This will allow Kellie and I to test any future children we might have. This really makes a HUGE difference. This test could save someone in my family's life and that is a very reassuring thought. Science is a crazy beast...that is for sure. Sorry for the long, drawn out explanation. I am fairly confident that I explained this correctly. I'd say about 70% confident. OK back to football!!!!! Philly's on the comeback. Word!

Have a great rest of your weekend people. Lots of love,

Steve

ECHO...ECho....echo....

Yesterday I had an echocardiogram(a sonogram for the heart) to see how the old ticker is doing. I met with my doctors today and found that everything is going well so far. I was able to see a pre-op echo of my heart next to a post-op echo of my heart and it was cool. The doctor showed me where they shaved off the heart wall and how the mitral-valve was functioning after surgery. Before surgery it was smacking into the my thickened wall. Yesterday when I was having my echo done I was thinking it would be cool to see a before and after image of my heart. Then today without asking my doctor showed me the EXACT thing I wanted to see yesterday. It's like they were reading my mind......whoa trippy man!

So the next step is to continue my cardiac rehab....and yes I am starting to overtake some of the 80 year olds in my conditioning class. Although it's safe to say a few of them are still lapping me. Oh well, Rome wasn't built in a day. At the end of February I have a stress test to check out a few glitches that occurred with my blood pressure during exercise pre-op. If that is fixed then I will only have to see the doctors once a year. If the blood pressure deal is still there then they will install a defibrillator. Which is a minor procedure. Either way I will be on the downhill slope of this thing and I can finally move forward with my life.

Most importantly things are going well. I'm feeling good and see the light at the end of the tunnel.....not the proverbial bright light I might add. Thanks to all for your support and I continue to feel lucky everyday.

Take care,

Steve

Sweatin' with the Oldies!!!!!

It's official, I am now part of the cardiac rehab class. Let it be known that I am by far the youngest person in room. I'm not sure if that is a good or bad. I'll go with a good but it's really up to you to interpret. There was a little concern that my older brethren would initiate me with some sort of hazing ritual. Thankfully they accepted me with just a handshake and a smile. Having a bunch of 70 and 80 year old men and women run laps around me was punishment enough.....only half kidding.

The past two days I have been riding the stationary bike for 15 minutes and walked on the treadmill for 20 minutes, working my heart rate to about 110. I clicked the machine up a few notches today and got my heart up to 120 beats per minute but was quickly chastised by the rehab professionals....that damn EKG machine gets me caught every time. So I had to back my heart rate down to 110. That's OK I have been able to work up a sweat for the first time since pre-surgery(apparently night sweats don't count as exercise....who knew?) and it felt good.

The staff monitors each heartbeat through our individual EKG machines so they are able to share with us what our heart is doing. We looked at an EKG from before my surgery and you can already see a difference in the way my heart is behaving. Kathy(my cardiac councilor) explained it to me but I didn't really understand except that it is a good thing......something about it taking less time for my heart to do something. That's a pretty cool thing to see....the actually healing of your heart documented right in front of your face. I guess it was money well spent. So no skipped beats so far, no pounding heart and no lightheadedness. Right on.

Hope all is well with all of you.

Steve

2009....It's time for rehab!

Three weeks after I was supposed to start my "official" Cardiac Rehab I have finally begun. This was postponed due to WINTER STORM 2008. I use quotation marks because I've implemented my own pseudo rehab plan which basically involves walking my dog around the dog park twice a day. However, it was nice to see the professionals and get hooked up to all the machines. It's better to be safe than sorry. Seven weeks ago I was in ICU and now I am on a treadmill. Dudes and Dudettes I'd say that's pretty 'effen good.

Today I learned that just because I feel good doesn't necessarily mean all is well inside the old chest. So it is important to monitor what happens to my ticker while I restart aerobic exercise. Meaning I will go to cardiac rehab three times a week for around a month. During this time I'll be hooked up to an EKG while I walk the treadmill and ride the bike so they can make sure my heart is working as it's supposed to.

On a personal note Kellie and myself rang in the New Year on our couch. We were all yawning around 11:30pm and as the ball dropped at midnight we were on our way to bed. That was a celebration my heart could definitely handle. Next year I will let it loose a little more....we'll give my ticker a test run in 2010. We hope you all had a great New Years and hopefully we'll be seeing many of you soon.

Take care,

Steve and Kellie

Home Again

Hello everyone. Kellie and I spent the last week in Georgia with her family for the Holiday's. That meant weather of 80 degrees and sunny. Sorry to my Seattle brethren....we hope you handled the winter weather. The heat of Georgia allowed me to step up my walks. At the beginning of the week I walked about 2 miles and was exhausted afterwards. By the end of the week I had no problem walking the two miles. I have definitely turned a corner over the past week and a half. I don't feel like I am "sick" anymore, although I am reminded constantly that there are still many things that I cannot do. I must keep reminding myself to be a good patient. But I really am feeling a whole lot better. We are continually amazed and how the body is capable of healing itself. Crazy! Crazy! Crazy!

I hope everyone has an excellent New Years and that 2009 starts with happiness and health. I for one will not take for granted the simplicity that is life in 2009. I will not take for granted the people that I love and I will continue to remind myself that is what is truly important. Life is short so I will live and love, take some time for myself and give what I can to those who are less fortunate. This is my resolution.

Love to all,

Steve

Snow Day

That's right this snow will not stop my rehab. Toby and I were not deterred and continued on our daily walks. However, he was much more interested in playing in the snow than walking in it. Good thing Kellie had the day off as she was in charge of wrangling the lad. My first day of Cardiac Rehab at Evergreen Hospital was scheduled for Wednesday but was cancelled due to a mysterious snow that I was unable to see. Oh well, I am capable of walking on my own. The weather was a nice break to the routine. Hopefully it hasn't caused too many issues for all of you. Stay warm, stay dry, and stay home if you can.

Take it easy,

Steve

Training Partner

A photo of my cardiac rehab training partner....Tobious Roosavelt Howard I aka. Toby! Happy Holidays!