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AiT4Life

Member
Joined
Mar 30, 2011
Messages
15
Location
Texas
"You're going to be fine." "They do this procedure regularly now." "Don't worry."

Naturally, I'm a little nervous. I was diagnosed with Severe Aortic Regurgitation in March of 2009 at the age of 19. The cardiologist said it needed to be replaced as soon as possible. March 21st, 2011 - two years later - my surgery was finally scheduled for April 27th, 2011.

I saw a video on Youtube yesterday by the user sjrlax10 and it inspired me. I want to make a video everyday for a month prior to my surgery (started yesterday), the day of my surgery and as long as it takes after my surgery until I feel back to "normal." In the videos before the surgery, I am going to focus on having fun and not worrying about the surgery. In the videos after the surgery, I am going to explain how I feel each day (i.e. what hurts, how I'm feeling, what I'm thinking etc.).

I am still learning how to edit videos. Using iMovie 2008 on my Mac. Feel free to post constructive criticism, leave tips, ask questions or let me know what you think I should do before surgery. I have a Facebook, Twitter and of course a Youtube account. PM me for info on the first two and I'll leave the link for the first "vlog" below. :)


Enjoy!

http://www.youtube.com/watch?v=yUvBmbqg-kg

Thanks,
Michael :D
 
Hi, Micheal,
(First thanks for what you do for our country and the world.) Now back to your heart stuff. I think it is a great idea to have this project to work on before and after surgery. Not only will it help people, but It will give you things to do before and after surgery, when you might be getting bored.
My son Justin is about your age,(will be 23 in April) he has had alot of heart surgeries, the last few when he 17 and 19, He didn't make any videos, but in my sig is the journel we've had going for a few years that we use to update everyone when he is getting ready for surgery and recoverrying and everyone is different and every surgery/recovery for even 1 person is different, but if it helps to see when he was able to do what ..sit up eat walk...(go to concerts :) ) if you want to skip the parts in between his surgeries, you can go to may 05 and June 07. he isn't involved in any online heart groups, but If you have any questions, pm me and I'll let him know.
Nice drums..its a shame you live so far, or you could come play in our garage :)
 
Welcome to this great forum, Michael, but sorry for the circumstances. Wishing you all the very best in the upcoming weeks!
I will be sure to check out your your tube videos.
 
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AiT4Life said:
"You're going to be fine." "They do this procedure regularly now." "Don't worry."

Naturally, I'm a little nervous. I was diagnosed with Severe Aortic Regurgitation in March of 2009 at the age of 19. The cardiologist said it needed to be replaced as soon as possible. March 21st, 2011 - two years later - my surgery was finally scheduled for April 27th, 2011.

I saw a video on Youtube yesterday by the user sjrlax10 and it inspired me. I want to make a video everyday for a month prior to my surgery (started yesterday), the day of my surgery and as long as it takes after my surgery until I feel back to "normal." In the videos before the surgery, I am going to focus on having fun and not worrying about the surgery. In the videos after the surgery, I am going to explain how I feel each day (i.e. what hurts, how I'm feeling, what I'm thinking etc.).

I am still learning how to edit videos. Using iMovie 2008 on my Mac. Feel free to post constructive criticism, leave tips, ask questions or let me know what you think I should do before surgery. I have a Facebook, Twitter and of course a Youtube account. PM me for info on the first two and I'll leave the link for the first "vlog" below. :)


Enjoy!

http://www.youtube.com/watch?v=yUvBmbqg-kg

Thanks,
Michael :D
Click to expand...

Michael, a heart felt WELCOME to our OHS family I have added your "event" to the VR calendar for 4/27/2001 and there is a wealth of knowledge here for the future .....

-a list of acronyms and short forms http://www.valvereplacement.org/forums/showthread.php?27413-List-of-Acronyms-and-Glossary

-what to ask pre surgery http://www.valvereplacement.org/forums/showthread.php?26668-Pre-surgery-consultation-list-of-questions

-what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

-Preparing the house for post surgical patients http://www.valvereplacement.org/forums/showthread.php?19034-Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well
 
Welcome to the "Waiting Room", Michael !!! I loved your approach to dealing with your up-coming surgery , great job on your youtube videos !!! Sending positive thoughts and well wishes your way. Keep smiling...you will soon have a proper functioning heart:)

Renee
Go Team 2011 !!!!!
 
Nice videos! Maybe I should put this in a different Pre-Surgery thread, but. . .
Now that I'm 4 months post-AVR and in cardio rehab and returning to some earlier "normal" activities (like bicycling and downhill skiing), I'm wishing that I had established a pre-op, pre-symptoms "baseline", esp. for my heartrate. I've got three inexpensive gizmos that tell me my heart rate (wrist BP cuff, watch, and chest-strap-plus-watch), but I never used any of them a year ago, when I was doing those same activities while still feeling fine.

I knew I was heading for the OHS (I'm a congenital BAVer), but I didn't know the HALF of the long rehab and recovery I was headed for. (Funny how the cardios and surgeons don't emphasize that part!) I had plenty of time to buy, and strap on, a chest-strap HR monitor (like the one I wear now while skiing), but nobody told me that I should. I think I, and "they", should have. . .

So, take it from me, a few months from now, you'll be curious about how much your HR rises while you power-walk a mile or two, or bike, or do anything else that you'll be gradually returning to post-op.
 
+Great idea Michael!! I enjoyed them so much....thanks for sharing. You are in my prayers and many positive thoughts. Keep that positive attitude...you will be fine.

Jeri
 
Hey Michael, you are quite a bit younger than me, I am 30, but I was still young for my surgery. I also heard all the lines " you are young and healthy, this will be easy", "recovery will be nothing", etc....... Just make sure you are taken care of as a normal patient, until your surgery is done with and you are healing. I had a few major complications during and after surgery and was 3 1/2 weeks in the hospital. It is a major surgery, and hard on any body, whether you are 19 or 70! Good luck!
 
normofthenorth,

What brand of gizmos would you recommend? and how much is "inexpensive"?? I think it would be very interesting to compare my heart rates before and after surgery.

Sunday's vlog
http://www.youtube.com/watch?v=9gO-PAvJCu4

Monday's vlog
http://www.youtube.com/watch?v=-IxMqhEaql8

I've decided on the Medtronic Freestyle valve. I figure I'll get a mechanical valve the next time around and not have to worry about anticoagulants until I'm older. My surgeon also believes this will be the best fit for me. He explained why, but I didn't quite understand. He said my aortic root needs to be replaced as well and the medtronic freestyle valve already has that part attached. Thoughts?

Michael
 
Micheal, I was watching your videos and as the "Mom" I had some thoughts about your surgery and recovery.
I know your base is in Texas, but I don't know where your family lives. Do they live close? If not are you having surgery close to the base or in a hospital closer to "home" /where your parents live? If you live far from your family, will someone be able to be with you while you are in the hospital or when you're first released if you are going to your "crib" :) or will you be staying with someone else, right after surgery? Not that these questions are any of my business, but I wanted to make sure you had a plan at least for the first week or so, so you'd be comfortable and after seeing in your fridge - :) wanted to make sure you have someone to help out even if it is just to bring you food help you with things that might be a little tough on your own when you can't lift anything as heavy as a gallon of milk etc.

People HAVE recoverred on their own and I know you have lots of people on the base that would help out, but some times it is easier just nicer, if someone is right there that you don't have to call when you need a little help, if you have different options
 
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I'm from Oklahoma. My mother is driving to San Antonio and plans on staying there for 10 days - the Tuesday before the surgery until Thursday the following week. I also have a "wingman" going with me for as long as the Air Force will allow him to stay. We're hoping its the full 3 weeks I'm in San Antonio. After the doctor releases me, I go on convalescense leave for another 6 to 8 weeks. I would like to go back to Oklahoma, but as of now that is still up in the air. I don't know if there is anywhere in Tulsa that will accept Tricare for the remainder of my rehab. The nurse said the discharge planner would take care of those arrangements, but I don't think it'd hurt to call around Tulsa to see if there is anywhere that will accept Tricare. I'm going to look into that now. :)
 
AiT4Life said:
I'm from Oklahoma. My mother is driving to San Antonio and plans on staying there for 10 days - the Tuesday before the surgery until Thursday the following week. I also have a "wingman" going with me for as long as the Air Force will allow him to stay. We're hoping its the full 3 weeks I'm in San Antonio. After the doctor releases me, I go on convalescense leave for another 6 to 8 weeks. I would like to go back to Oklahoma, but as of now that is still up in the air. I don't know if there is anywhere in Tulsa that will accept Tricare for the remainder of my rehab. The nurse said the discharge planner would take care of those arrangements, but I don't think it'd hurt to call around Tulsa to see if there is anywhere that will accept Tricare. I'm going to look into that now. :)
Click to expand...

It sounds like a good idea to look into that now and make any arrangements, so you can make plans and not having to deal with that when you are just recoverying from surgery. Maybe if you called Tricare they could help you instead of calling the different hospitals in Tulsa. Will you and your mom be staying in your room those first few days?
 
Good news! Oklahoma Heart Institute accepts Tricare. Just gotta get a referral from the doctor which shouldn't be too difficult. :)
 
"Will you and your mom be staying in your room those first few days?"

The first few days she gets to San Antonio? She's going to get a room on base somewhere.
The first few days after surgery? I would think so. As long as she's allowed to stay in there anyway.
The first few days I get home from convalescence leave? She'll be back at work, but I figure by then I'll be able to move around the house for the essentials. Just gotta find rides to rehab if it gets cleared.
 
AiT4Life said:
normofthenorth,

What brand of gizmos would you recommend? and how much is "inexpensive"?? I think it would be very interesting to compare my heart rates before and after surgery.
Click to expand...

Michael, I've outlined the details of THREE cheap Chinese monitors I bought to help during this "adventure", on this forum, at http://www.valvereplacement.org/forums/showthread.php?37152-I-found-two-GREAT-(cheap-Chinese)-monitors-and-one-dud!&highlight=Chinese+monitor The two that work great each cost Cdn$20, and the third one -- the "dud" in the title -- is available for around US$8 postpaid from Hong Kong. Despite the title, I've gotten the "dud" to work reasonably well, though it is a bit finicky.

It's also pretty easy to take your pulse without a monitor, while you're standing still. Just stick three fingers of your non-watch (right?) hand on your wrist or neck, and count pulses while looking at a watch that shows seconds (or a stopwatch). It's common to count for 10 seconds, and either use that number as is (1/6 of your Beats Per Minute), or multiply times 6 to get BPM. I sometimes count for 12 seconds, then multiply x 5 (which I find way easier than x 6). BTW, if you start timing right "on" a pulse beat (as you should), then you should count that pulse as "zero", not "one", to get an accurate reading. OTOH, since you're going to compare your own pre-op readings to your own post-op readings, a systematic bias (like over-counting by 6 BPM) might not matter at all.

If you want to get "instant" heart-rate readings while bicycling in traffic or downhill skiing or doing other "scary" things, the wireless chest-band monitor is the only one I've got that works; the others make you stop and fiddle, but the one with the chest-strap just makes you glance at the watch for a split-second. And if you want to read your BP, you need either a wrist-cuff gizmo or an arm-cuff gizmo. My $20 one is still working fine after 4 months of ~daily use, though I wouldn't be shocked if it failed. It has a much harder mechanical job to do than the other two monitors.
 
AiT4Life said:
"Will you and your mom be staying in your room those first few days?"

The first few days she gets to San Antonio? She's going to get a room on base somewhere.
The first few days after surgery? I would think so. As long as she's allowed to stay in there anyway.
The first few days I get home from convalescence leave? She'll be back at work, but I figure by then I'll be able to move around the house for the essentials. Just gotta find rides to rehab if it gets cleared.
Click to expand...

Yes I was asking about when you are discharged from the hospital.
As for when you are at her home, everyone is different, but having a son that had surgery around your age, I would think at 3 weeks you'd be fine while she is at work.
 
AiT4Life said:
I've decided on the Medtronic Freestyle valve. I figure I'll get a mechanical valve the next time around and not have to worry about anticoagulants until I'm older. My surgeon also believes this will be the best fit for me. He explained why, but I didn't quite understand. He said my aortic root needs to be replaced as well and the medtronic freestyle valve already has that part attached. Thoughts?
Click to expand...

The choice of tissue vs. mech is one of the most intensely personal choices most of us make, so if you're happy with your decision, then go for it. I haven't seen any solid "fine-grained" data on how long that valve might last in a 21-year-old, but I'd guess that you'd be lucky to get 10 good years out of it. Younger patients muck up their tissue valves much faster than we 60-somethings (or older), as you've probably read already. (Fair is fair, since you young folks do so much better in so many different measures!)

The fact that your surgeon is comfortable with that model of valve is a big plus, though it's often possible to "shop around" for a surgeon who's comfy with the kind of valve you prefer, too. It's hard to know what I'd choose at your age (even WITH all my current knowledge and wisdom! ;) ), but I'd guess that I'd probably go mechanical, live with the ACT, and hope to escape the re-ops. Or maybe I'd become an instant expert on the growing TAVI field, and decide to bet on that. . .
 
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