Friday, November 20, 2009
Friday, May 1, 2009
Six Months
Hi everyone. I have become extremely lazy about posting. There really isn't that much to report on so I've gone cyber-silent. An important date has come and gone in my recovery so I thought I'd quickly share. It has now been six months and a couple of weeks since my surgery. It's hard to believe that so much time has passed. I continue to do things I'd only dreamt of before my surgery. Thanks again for all your love and support. Kellie and I really appreciate it. Take care.
Steve
Monday, March 30, 2009
A Good Day
Hello all. I type this while trying to recover from of the hottest salsa I've ever had. My mouth is en fuego but my heart withstood the fire so all is good.
An update on the gal I told you all about last week who had a heart transplant. This 17 year old superwoman had her chest open for two days after her transplant because she kept getting blood clots around her heart. She was also on about 10 different medications because her blood pressure was very volatile. Could you imagine being in high school and having a heart transplant. It puts things in perspective, doesn't it? Her chest is now closed and her blood pressure is stable. She's awake and ready to move forward. I thought you'd all be interested.
As for me I played tennis for the first time in about a year last Friday with my dad. I never realized how bad my condition had gotten until I played tennis with a healthy heart. For the first time in probably a decade I was able to move around the court without feeling like my heart was about to explode. It's just crazy to me that I actually played with the symptoms I was having....probably not a very smart idea. This time I was able to think about playing the game rather than where my next breath was going to come from or if I was going to pass out. Now if I could just get my forehand working again all would be good.
Playing a sport was actually fun again. This is a HUGE victory for me. There seems to be some normalcy returning to my life. I'm sure that I will have days that aren't so good but for this week I am stoked.
Take care and enjoy your lives,
Steve
An update on the gal I told you all about last week who had a heart transplant. This 17 year old superwoman had her chest open for two days after her transplant because she kept getting blood clots around her heart. She was also on about 10 different medications because her blood pressure was very volatile. Could you imagine being in high school and having a heart transplant. It puts things in perspective, doesn't it? Her chest is now closed and her blood pressure is stable. She's awake and ready to move forward. I thought you'd all be interested.
As for me I played tennis for the first time in about a year last Friday with my dad. I never realized how bad my condition had gotten until I played tennis with a healthy heart. For the first time in probably a decade I was able to move around the court without feeling like my heart was about to explode. It's just crazy to me that I actually played with the symptoms I was having....probably not a very smart idea. This time I was able to think about playing the game rather than where my next breath was going to come from or if I was going to pass out. Now if I could just get my forehand working again all would be good.
Playing a sport was actually fun again. This is a HUGE victory for me. There seems to be some normalcy returning to my life. I'm sure that I will have days that aren't so good but for this week I am stoked.
Take care and enjoy your lives,
Steve
Monday, March 23, 2009
Hello Again
Hi everyone. I hope life is treating you all well. To all that still read this I am a member of an online organization called the HCMA(Hypertrophic Cardiomyopathy Association). This is a place where people and families affected by HCM can go to find support and get answers to any questions they might have about the disease. It is here that I am reminded everyday how fleeting and precious life can be. The severity of this disease can vary greatly amongst those of us affected with it. Just today there was a posting of a 17 year old girl who underwent a heart transplant on Saturday because of an extreme case of HCM. Her name is Sara and she is currently fighting for her life. Whatever you believe in.....prayer, positive thoughts, energy....please send them her way. Sometimes life just isn't fair!!!!! If you are ever interested in learning more about HCM go to http://www.4hcm.org/
As for me I continue to feel stronger everyday. I'll be attempting to hit some tennis balls this Friday for the first time in many, many months. This is something I miss very much and am hoping my responds well.
Take care everyone,
Steve
As for me I continue to feel stronger everyday. I'll be attempting to hit some tennis balls this Friday for the first time in many, many months. This is something I miss very much and am hoping my responds well.
Take care everyone,
Steve
Friday, February 27, 2009
A Return to Normalcy
On Tuesday I took what could turn out to be my final major test of this experience. I had a stress echocardiogram (like a stress test but with an echo before and after the treadmill) to see how my heart would react to exercise. Pre-Op my blood pressure would rise at the beginning of exercise and then it would slowly fall. There are 5 warning signs which point to increased risk of Sudden Cardiac Arrest and this is one of them. We were hoping that surgery would fix this problem but wouldn't know for sure until now. This test would also tell us if the obstruction in my left ventricle was gone.
I spoke with my doctor today and the obstruction is gone when I am exercising and at rest. My blood pressure also reacted normally which means I will not need to have a ICD(defibrillator) implanted in my chest. I am going to do one day of heart monitoring next week to make sure we haven't missed anything but according to all of this data I am in good shape.
I asked my doctor when I could get back to normal exercise and quit my cardiac rehab program. He told me whenever I was ready I could let it rip. So I drove straight to the gym. I went to the treadmill and walked for 15 minutes and then I decided to run. I ran for 10 minutes straight at 5 MPH. In my head I heard...."run howie run....". This may not seem like much but I can't remember the last time I could run for 10 minutes without stopping to catch my breath. I'm completely stoked and a little bit tired. I went from the treadmill to the bike and then I decided I'd give the rowing machine a shot. I'm not exactly sure why I thought that would be a good idea considering I haven't rowed a boat in 15 years. Tomorrow is gonna be brutal.
I will always have HCM and with it I will have limitations. I will need to be monitored by my cardiologists for the rest of my life. I will probably experience some symptoms for the entirety of my life but that is okay. I am alive and I feel pretty damn good. In fact I feel good for the first time in what seems like forever. Being able to walk up stairs again would have been good enough for me so being able to run is like winning the freakin' lottery(just in case I bought a ticket and then lost). Do me a favor and never take your health for granted. It is such a precious gift.
I'll keep the updates coming as long as there is stuff to update.
Later,
Steve
I spoke with my doctor today and the obstruction is gone when I am exercising and at rest. My blood pressure also reacted normally which means I will not need to have a ICD(defibrillator) implanted in my chest. I am going to do one day of heart monitoring next week to make sure we haven't missed anything but according to all of this data I am in good shape.
I asked my doctor when I could get back to normal exercise and quit my cardiac rehab program. He told me whenever I was ready I could let it rip. So I drove straight to the gym. I went to the treadmill and walked for 15 minutes and then I decided to run. I ran for 10 minutes straight at 5 MPH. In my head I heard...."run howie run....". This may not seem like much but I can't remember the last time I could run for 10 minutes without stopping to catch my breath. I'm completely stoked and a little bit tired. I went from the treadmill to the bike and then I decided I'd give the rowing machine a shot. I'm not exactly sure why I thought that would be a good idea considering I haven't rowed a boat in 15 years. Tomorrow is gonna be brutal.
I will always have HCM and with it I will have limitations. I will need to be monitored by my cardiologists for the rest of my life. I will probably experience some symptoms for the entirety of my life but that is okay. I am alive and I feel pretty damn good. In fact I feel good for the first time in what seems like forever. Being able to walk up stairs again would have been good enough for me so being able to run is like winning the freakin' lottery(just in case I bought a ticket and then lost). Do me a favor and never take your health for granted. It is such a precious gift.
I'll keep the updates coming as long as there is stuff to update.
Later,
Steve
Monday, February 16, 2009
The Road
It's been a few weeks since my last blog(again sorry...I am lazy) which to me means I'm focusing less on my illness and more on the other things that life has to offer. So good s&*t on my part. One's health can very often be a state of mind. Over the last few months I've had the opportunity to tell many people the story of my disease and how it has affected the past 33 years of my life. When people hear that I've had open heart surgery they stare at me with a blank look trying to figure out how it is that I have heart disease. Quickly I explain to them that my heart problems are not associated with years of poor diet and little or no exercise rather I have a congenital condition that I was born with. There are LOTS of us out there and many of us are in our 20's and 30's.
Once I've cleared this hurdle most people steer the conversation toward how I have reconciled any feelings of anger or bitterness I have in my heart. I'd love to sit here and say I have never questioned God's plan for me. In my own quiet moments I've enjoyed a few choice words for the man upstairs. I'd question my own humanity if I didn't. Once I was able to push aside any feelings of pity or anger I began to make sense of this entire experience. I have never looked back. So here is where I'm at today. Remember all feelings are subject to change.
Like every experience that adds to a person's character my heart is no different. I would not be the person that I am today if I hadn't traveled this road. Without a hint of arrogance I like who I am and I like how I got here. I wouldn't change a thing about my life including the years of misdiagnosis, surgery or my recovery. I cannot change any of the things that have happened or will happen in the future with regards to my heart. I have accepted this and am at peace with it. I do get to choose to be happy. I get to be thankful for who I am. Most importantly I get to live.
I work in an environment where I hear tragic stories of survival everyday. I teach English as a Second Language to immigrants and refugees. These people's life stories would blow your mind. The things some of them have been witness to are so horrific they almost sound untrue. Their stories certainly put into perspective what I have been through and how extremely lucky I am to have grown up in a country with so much wealth and opportunity. Things could be so much worse.
I have also been lucky to recover in a cardiac program where I get to heal with people who have survived the face of death. In fact a couple of them did literally die and then they became miracles. Talk about strength. When you can say I died but I came back you are the freakin' man or woman. Each story strengthens my amazement at the resolve of the human spirit. With the help of their friends and family my new amigos have recovered and thrived in their lives. They are true survivors. Many have completely altered how they live their lives to ensure longevity with their families. It takes strength to change. It takes courage to change. It takes love to change. My heart has allowed me to see stories that many only read in books or watch in movies. I am so thankful for the life I have been given. I am thankful to be a survivor.
Sorry to blabber on and on but this stuff is important to me.
Take care all and much love,
Steve
Once I've cleared this hurdle most people steer the conversation toward how I have reconciled any feelings of anger or bitterness I have in my heart. I'd love to sit here and say I have never questioned God's plan for me. In my own quiet moments I've enjoyed a few choice words for the man upstairs. I'd question my own humanity if I didn't. Once I was able to push aside any feelings of pity or anger I began to make sense of this entire experience. I have never looked back. So here is where I'm at today. Remember all feelings are subject to change.
Like every experience that adds to a person's character my heart is no different. I would not be the person that I am today if I hadn't traveled this road. Without a hint of arrogance I like who I am and I like how I got here. I wouldn't change a thing about my life including the years of misdiagnosis, surgery or my recovery. I cannot change any of the things that have happened or will happen in the future with regards to my heart. I have accepted this and am at peace with it. I do get to choose to be happy. I get to be thankful for who I am. Most importantly I get to live.
I work in an environment where I hear tragic stories of survival everyday. I teach English as a Second Language to immigrants and refugees. These people's life stories would blow your mind. The things some of them have been witness to are so horrific they almost sound untrue. Their stories certainly put into perspective what I have been through and how extremely lucky I am to have grown up in a country with so much wealth and opportunity. Things could be so much worse.
I have also been lucky to recover in a cardiac program where I get to heal with people who have survived the face of death. In fact a couple of them did literally die and then they became miracles. Talk about strength. When you can say I died but I came back you are the freakin' man or woman. Each story strengthens my amazement at the resolve of the human spirit. With the help of their friends and family my new amigos have recovered and thrived in their lives. They are true survivors. Many have completely altered how they live their lives to ensure longevity with their families. It takes strength to change. It takes courage to change. It takes love to change. My heart has allowed me to see stories that many only read in books or watch in movies. I am so thankful for the life I have been given. I am thankful to be a survivor.
Sorry to blabber on and on but this stuff is important to me.
Take care all and much love,
Steve
Thursday, January 29, 2009
The Truth About Salt
Not to sound melodramatic but if there was one post of mine that you should read it is this one. As part of my recovery I have been focusing on a heart healthy diet. Although my disease was not caused by diet it is important for all heart patients to eat and live healthy. In fact it is important for all people to eat and live healthy. Unless you don't want to then I guess you get what you get. One of the major aspects of a heart healthy diet that Kellie and I have been following is limiting our sodium intake. Before my surgery I never paid much attention to sodium or how much I was putting into my body on any given day. All I thought about was fat and calorie intake. Those are the two things we read and hear about all the time. It turns out that limiting one's sodium intake is equally important to overall heart health. Here goes!
According to the American Heart Association a heart healthy diet includes no more than 2300mg of sodium per day. Each food item should not include more than 230mg of sodium per serving. How much is 2300mg of salt? It is equal to 1 teaspoon. Crazy, huh? That doesn't seem like very much of the crystal goodness many of us depend on for flavor. How much sodium does the average American eat a day? Try over 5,000mg on for size. That is according to various reports I've read but my Cardiologist says it's more like 8,000 to 10,000mg a day. Are you kidding me? Did you know you were killing yourself? I didn't. This type of salt intake can and will lead to high blood pressure, increase chance of heart disease, stroke and kidney damage. If you already have heart disease eating too much sodium will make it worse.
The good news is that the average person has 5 pounds of extra weight due to high sodium intake. Water retention ain't just for the pregnant people. If you cut back on salt those extra 5 pounds you've been trying to lose might just drop right off!
Here are a few pointers on how to keep too much sodium out of your diet. First read your food labels. Trader Joe's has a lot of low sodium products. They take some getting used to but after a month or so the pallet adapts. Try and eat at home using fresh ingredients. Each Sunday I cook a lunch meat for the week. Packaged lunch meat and canned soups are filled with salt
For those that eat out all the time you are getting absolutely hosed by sodium. Restaurants are havens for food that are high in fat and sodium. Don't kid yourself and think their salads are any better. They put just as much garbage in those as they do their burgers. Here are a few examples from restaurants that are convenient and for all you parents out there they claim to be "family friendly". Remember 2300mg of sodium per day....
Red Robin
Children's Grilled Cheesewhich: 29g fat, 1604mg sodium. (Are we sure there isn't a steak inside that sandwich? Remember this is on the children's menu. The other options are equally as bad. This doesn't include a side.)
Garden Burger w/out Fries: 18g fat, 1748 mg sodium, 517 Calories. (This is off the "lite" menu. Really...lite? I think not.)
Apple Harvest Chicken Salad: 35g fat, 1366 mg sodium.(YUUMMMMY...lettuce, apples, salt and fat and fat and salt and fat with salt!)
Whiskey River BBQ Chicken Wrap(my old favorite): 81g Fat, 2972mg Sodium....Yes, this is accurate. I wrote an email to Red Robin complaining of their lack of heart healthy options. They replied by telling me that all menu items could be made to order. Therefore I should take an active role in my nutrition. I couldn't agree more. On their website is an option to add and subtract ingredients from each menu item to make them more healthy...so I gave it a try with the old Whiskey River BBQ Chicken Wrap.
Whiskey River BBQ Chicken Wrap w/out cheese, ranch, fried tortilla strips and BBQ sauce: 1331mg sodium.....still ridiculous. I'll try again.(no cheese, no sauce....just chicken, lettuce and a tortilla.)
Whiskey River BBQ Chicken Wrap w/out cheese, ranch, fried tortilla strips, BBQ sauce and chicken. In other words, their tortilla with lettuce and a side of melon: 812mg sodium....over 1/4 of my daily allowance per the American Heart Association. And I get a tortilla, lettuce and 2 slices of melon all for $10...sweet deal. Thanks for the healthy options Red Robin!
According to "Parents Magazine", Red Robin was said to be one of the "10 Best Family Restaurants". I guess if you want your children to eat unhealthy, become overweight, incur high blood pressure, heart disease, kidney failure and die at a young age then this is the place for you.
This is upsetting....so I tried to make myself feel better by looking at the nutritional values of my old staple and healthy option....Subway. I knew in my heart this would be the place to go.
These nutritional values include only bread, meat and assorted vegetables. No sauces, cheese, salt or pepper.
Subway
6" Turkey Breast: 4.5g fat, 1000mg Sodium
6" Veggie Delight: 3 g fat, 500 mg sodium
6" Club: 6g fat, 1290mg Sodium
6" BMT: 21g fat, 1770mg Sodium
Subway is a lot better on the fat and calories but still brutal on the sodium intake. I guess Subway is no longer the healthy option for me. Last of all I looked at McDonald's figuring it would be the worst of the bunch.
Mc'Donalds
Hamburger: 9g fat, 520mg sodium.
Cheeseburger: 12g fat, 760mg sodium
Big Mac: 29g fat, 1040mg Sodium
Ranch Snack Wrap w/Grilled Chicken: 10g fat, 830mg Sodium.
Asian Chicken Salad w/out dressing: 10g fat, 890mg sodium
w/low fat sesame ginger dressing: 12.5g fat, 1630 mg sodium.
McDonald's isn't good but it doesn't look as bad as I thought it would. The point isn't to keep all of you from enjoying a meal out from time to time but be careful. Restaurants are sneaky with their salt. Establishments that market to our children (a big red and yellow bird, golden arches..come on) are indeed killing them. The larger chains have nutritional information at their locations as well as on their websites. Check it out. I bet you will be shocked by what you find. I was!
If you decide to actively lower your sodium intake at first your food will taste bland and in some instances brutal. Stick with it and incorporate various spices and other healthy ingredients to fill up your food with flavor. You'll get used to it and soon too much salt will seem harsh. Trust me I LOVE to eat and I need me some flavor. It took some time but I am now enjoying my new "salt lite" lifestyle. Remember you've got an easy 5 pounds to lose.....maybe more.!!!!
I'm doing great and start working again on Monday.
Take care all,
Steve
According to the American Heart Association a heart healthy diet includes no more than 2300mg of sodium per day. Each food item should not include more than 230mg of sodium per serving. How much is 2300mg of salt? It is equal to 1 teaspoon. Crazy, huh? That doesn't seem like very much of the crystal goodness many of us depend on for flavor. How much sodium does the average American eat a day? Try over 5,000mg on for size. That is according to various reports I've read but my Cardiologist says it's more like 8,000 to 10,000mg a day. Are you kidding me? Did you know you were killing yourself? I didn't. This type of salt intake can and will lead to high blood pressure, increase chance of heart disease, stroke and kidney damage. If you already have heart disease eating too much sodium will make it worse.
The good news is that the average person has 5 pounds of extra weight due to high sodium intake. Water retention ain't just for the pregnant people. If you cut back on salt those extra 5 pounds you've been trying to lose might just drop right off!
Here are a few pointers on how to keep too much sodium out of your diet. First read your food labels. Trader Joe's has a lot of low sodium products. They take some getting used to but after a month or so the pallet adapts. Try and eat at home using fresh ingredients. Each Sunday I cook a lunch meat for the week. Packaged lunch meat and canned soups are filled with salt
For those that eat out all the time you are getting absolutely hosed by sodium. Restaurants are havens for food that are high in fat and sodium. Don't kid yourself and think their salads are any better. They put just as much garbage in those as they do their burgers. Here are a few examples from restaurants that are convenient and for all you parents out there they claim to be "family friendly". Remember 2300mg of sodium per day....
Red Robin
Children's Grilled Cheesewhich: 29g fat, 1604mg sodium. (Are we sure there isn't a steak inside that sandwich? Remember this is on the children's menu. The other options are equally as bad. This doesn't include a side.)
Garden Burger w/out Fries: 18g fat, 1748 mg sodium, 517 Calories. (This is off the "lite" menu. Really...lite? I think not.)
Apple Harvest Chicken Salad: 35g fat, 1366 mg sodium.(YUUMMMMY...lettuce, apples, salt and fat and fat and salt and fat with salt!)
Whiskey River BBQ Chicken Wrap(my old favorite): 81g Fat, 2972mg Sodium....Yes, this is accurate. I wrote an email to Red Robin complaining of their lack of heart healthy options. They replied by telling me that all menu items could be made to order. Therefore I should take an active role in my nutrition. I couldn't agree more. On their website is an option to add and subtract ingredients from each menu item to make them more healthy...so I gave it a try with the old Whiskey River BBQ Chicken Wrap.
Whiskey River BBQ Chicken Wrap w/out cheese, ranch, fried tortilla strips and BBQ sauce: 1331mg sodium.....still ridiculous. I'll try again.(no cheese, no sauce....just chicken, lettuce and a tortilla.)
Whiskey River BBQ Chicken Wrap w/out cheese, ranch, fried tortilla strips, BBQ sauce and chicken. In other words, their tortilla with lettuce and a side of melon: 812mg sodium....over 1/4 of my daily allowance per the American Heart Association. And I get a tortilla, lettuce and 2 slices of melon all for $10...sweet deal. Thanks for the healthy options Red Robin!
According to "Parents Magazine", Red Robin was said to be one of the "10 Best Family Restaurants". I guess if you want your children to eat unhealthy, become overweight, incur high blood pressure, heart disease, kidney failure and die at a young age then this is the place for you.
This is upsetting....so I tried to make myself feel better by looking at the nutritional values of my old staple and healthy option....Subway. I knew in my heart this would be the place to go.
These nutritional values include only bread, meat and assorted vegetables. No sauces, cheese, salt or pepper.
Subway
6" Turkey Breast: 4.5g fat, 1000mg Sodium
6" Veggie Delight: 3 g fat, 500 mg sodium
6" Club: 6g fat, 1290mg Sodium
6" BMT: 21g fat, 1770mg Sodium
Subway is a lot better on the fat and calories but still brutal on the sodium intake. I guess Subway is no longer the healthy option for me. Last of all I looked at McDonald's figuring it would be the worst of the bunch.
Mc'Donalds
Hamburger: 9g fat, 520mg sodium.
Cheeseburger: 12g fat, 760mg sodium
Big Mac: 29g fat, 1040mg Sodium
Ranch Snack Wrap w/Grilled Chicken: 10g fat, 830mg Sodium.
Asian Chicken Salad w/out dressing: 10g fat, 890mg sodium
w/low fat sesame ginger dressing: 12.5g fat, 1630 mg sodium.
McDonald's isn't good but it doesn't look as bad as I thought it would. The point isn't to keep all of you from enjoying a meal out from time to time but be careful. Restaurants are sneaky with their salt. Establishments that market to our children (a big red and yellow bird, golden arches..come on) are indeed killing them. The larger chains have nutritional information at their locations as well as on their websites. Check it out. I bet you will be shocked by what you find. I was!
If you decide to actively lower your sodium intake at first your food will taste bland and in some instances brutal. Stick with it and incorporate various spices and other healthy ingredients to fill up your food with flavor. You'll get used to it and soon too much salt will seem harsh. Trust me I LOVE to eat and I need me some flavor. It took some time but I am now enjoying my new "salt lite" lifestyle. Remember you've got an easy 5 pounds to lose.....maybe more.!!!!
I'm doing great and start working again on Monday.
Take care all,
Steve
Sunday, January 18, 2009
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
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
Thursday, January 15, 2009
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
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
Thursday, January 8, 2009
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
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
Monday, January 5, 2009
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
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
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