Almost 1 fewer band parent

[TWHSParent]

Hi all. I had my aorta dissect a few weeks ago. Fortunately it did not explode so I had enough time for an ambulance ride then a helicopter ride when they figured out the problem. Then got stuff fixed and am on the road to recovery.

[WoodlandsMom4ever]

Woah!   So glad you are on the road to recovery!!! I know you have the best nurse ever taking good care of you.   Best wishes!! 

[LeanderMomma]

  On 7/29/2021 at 6:15 AM, TWHSParent said:

Hi all. I had my aorta dissect a few weeks ago. Fortunately it did not explode so I had enough time for an ambulance ride then a helicopter ride when they figured out the problem. Then got stuff fixed and am on the road to recovery.

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??? oh my goodness, friend!  I’m so sorry but so glad you are ok!!!!

[TWHSParent]

I am home from my nearly 1 month stay in the hospital. Lots of OT and PT ahead, but while they had me cracked open they did not find anything other than the aorta issue. With that fixed I expect things continue to improve day to day.

Here is a research article on the repair that was done to me: https://www.sciencedirect.com/science/article/pii/S0022522312015139

FYI, I was driving when this happened, so I had a nasty 1 car accident when I passed out about 0.5 miles from home. No major issues from the accident as my car did a great job protecting me when I went flying off the road into a pole. I was transported by ambulance to one hospital where they figured out the issue, then air lifted to a second where they performed the surgery. This happened July 9th, and my first waking memory after the issue is from around July 21st.

[LeanderMomma]

  On 8/4/2021 at 2:42 PM, TWHSParent said:

I am home from my nearly 1 month stay in the hospital. Lots of OT and PT ahead, but while they had me cracked open they did not find anything other than the aorta issue. With that fixed I expect things continue to improve day to day.

Here is a research article on the repair that was done to me: https://www.sciencedirect.com/science/article/pii/S0022522312015139

FYI, I was driving when this happened, so I had a nasty 1 car accident when I passed out about 0.5 miles from home. No major issues from the accident as my car did a great job protecting me when I went flying off the road into a pole. I was transported by ambulance to one hospital where they figured out the issue, then air lifted to a second where they performed the surgery. This happened July 9th, and my first waking memory after the issue is from around July 21st.

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Wow. That’s mind blowing really. You are indeed lucky to be alive. ?

[TWHSParent]

Short update. Still kicking around, which is a good thing. Saw a study recently where if you are roughly the 20% that survive to more than 60 days post surgery (yes, about 80% die of what happened to me) then your lifespan tends to go back to the normal ageing curve.

I just had a 2nd throat surgery yesterday that is a complication of my original hospitalization. They used a large (9mm) breathing tube during my open heart surgery to repair my aorta that stayed in for the first ~10 days. It caused damage to my airway and created what are called granulomas (non-cancerous). In my case these have grown abnormally large and partially blocked my airway at my vocal cords (both behind and in front), which both seriously impacted my speech and, more importantly, my breathing. Hopefully yesterday's surgery, where they more aggressively lasered the growths, will be the last. We'll monitor of course. My throat is very sore after the lasers and talking hasn't come fully back yet, so more healing to go.

[MadisonBandMan1]

  On 3/29/2022 at 12:22 PM, TWHSParent said:

Short update. Still kicking around, which is a good thing. Saw a study recently where if you are roughly the 20% that survive to more than 60 days post surgery (yes, about 80% die of what happened to me) then your lifespan tends to go back to the normal ageing curve.

I just had a 2nd throat surgery yesterday that is a complication of my original hospitalization. They used a large (9mm) breathing tube during my open heart surgery to repair my aorta that stayed in for the first ~10 days. It caused damage to my airway and created what are called granulomas (non-cancerous). In my case these have grown abnormally large and partially blocked my airway at my vocal cords (both behind and in front), which both seriously impacted my speech and, more importantly, my breathing. Hopefully yesterday's surgery, where they more aggressively lasered the growths, will be the last. We'll monitor of course. My throat is very sore after the lasers and talking hasn't come fully back yet, so more healing to go.

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I am glad that you have been able to continue to work through this and are doing okay for the moment.  How is the recovery from that second surgery going?

[TWHSParent]

  On 4/8/2022 at 5:21 AM, MadisonBandMan1 said:

I am glad that you have been able to continue to work through this and are doing okay for the moment.  How is the recovery from that second surgery going?

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Breathing is immensely better. Before it was on the order of trying to breathe through a straw - if you aren't very active it is probably OK, but once you start to do something it is a pretty big struggle. I think being a brass player in my earlier years helped - it really increased my lung capacity even now all these decades later, and strengthened my diaphragm.

On the less good side, the surgeon is pretty convinced that scar tissue will grow back, once again impeding the airway. So I may have more surgeries in the future. I am not a fan, but prefer to be able to breathe.

[LeanderMomma]

  On 4/8/2022 at 2:30 PM, TWHSParent said:

Breathing is immensely better. Before it was on the order of trying to breathe through a straw - if you aren't very active it is probably OK, but once you start to do something it is a pretty big struggle. I think being a brass player in my earlier years helped - it really increased my lung capacity even now all these decades later, and strengthened my diaphragm.

On the less good side, the surgeon is pretty convinced that scar tissue will grow back, once again impeding the airway. So I may have more surgeries in the future. I am not a fan, but prefer to be able to breathe.

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I’m so sorry that you are having to deal with this!!

[MadisonBandMan1]

  On 4/8/2022 at 2:30 PM, TWHSParent said:

Breathing is immensely better. Before it was on the order of trying to breathe through a straw - if you aren't very active it is probably OK, but once you start to do something it is a pretty big struggle. I think being a brass player in my earlier years helped - it really increased my lung capacity even now all these decades later, and strengthened my diaphragm.

On the less good side, the surgeon is pretty convinced that scar tissue will grow back, once again impeding the airway. So I may have more surgeries in the future. I am not a fan, but prefer to be able to breathe.

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I was just thinking about you and wondering how you were holding up, and if any positive changes have come your way yet. How are you doing?

[TWHSParent]

  On 6/3/2022 at 7:15 AM, MadisonBandMan1 said:

I was just thinking about you and wondering how you were holding up, and if any positive changes have come your way yet. How are you doing?

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I am still hanging around. No major changes - things are moving in a positive way generally (little ups and downs of course). I will never fully recover, but I can still have a good quality of life. But it is so hard to keep pushing! Such a mental and physical struggle pretty much every day.

Thank you for asking about me. Little things like this help keep me moving forward. It is greatly appreciated!

I hope you are doing well with your studies.

[MadisonBandMan1]

  On 6/3/2022 at 7:06 PM, TWHSParent said:

I am still hanging around. No major changes - things are moving in a positive way generally (little ups and downs of course). I will never fully recover, but I can still have a good quality of life. But it is so hard to keep pushing! Such a mental and physical struggle pretty much every day.

Thank you for asking about me. Little things like this help keep me moving forward. It is greatly appreciated!

I hope you are doing well with your studies.

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I am glad that you can still have a good quality of life and are at the very least much better than where you were. No problem by the way. just very glad to know you are doing okay. 

Thank you very much and college is going as college goes...long. Lol. 

[LeanderMomma]

  On 6/3/2022 at 7:06 PM, TWHSParent said:

I am still hanging around. No major changes - things are moving in a positive way generally (little ups and downs of course). I will never fully recover, but I can still have a good quality of life. But it is so hard to keep pushing! Such a mental and physical struggle pretty much every day.

Thank you for asking about me. Little things like this help keep me moving forward. It is greatly appreciated!

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I sure hope we get to see you again at BOA San Antonio some day!  You are definitely missed. 

[MadisonBandMan1]

  On 6/3/2022 at 7:06 PM, TWHSParent said:

I am still hanging around. No major changes - things are moving in a positive way generally (little ups and downs of course). I will never fully recover, but I can still have a good quality of life. But it is so hard to keep pushing! Such a mental and physical struggle pretty much every day.

Thank you for asking about me. Little things like this help keep me moving forward. It is greatly appreciated!

I hope you are doing well with your studies.

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Will your health allow you to go to any shows yet? DCI southwest etc, or do you still have to play it safe and stay away for a while?

[TWHSParent]

  On 7/8/2022 at 5:24 AM, MadisonBandMan1 said:

Will your health allow you to go to any shows yet? DCI southwest etc, or do you still have to play it safe and stay away for a while?

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Right now it is all the medical appointments, surgeries, and of course bills that are more of an impediment. Health wise I can and have traveled back to Houston a couple times to meet with experts on my condition. My energy level is still much lower than it was, so I have to be careful so I don't get exhausted, but it is slowly coming back from my cardio workouts. I am still improving, and I hope to be able to attend in person in the future, just don't know when yet.

[MadisonBandMan1]

I am super glad that you are still making progress in your recovery, even if slowly. Hope that you soon get to come to a show again. I know that would probably do wonders to your morale. In the meantime as you recover what do you do to keep yourself entertained/sane?

You are a treasure of this site. I think about you a lot. Definitely going to keep checking up on you.  

[TWHSParent]

  On 7/15/2022 at 9:26 AM, MadisonBandMan1 said:

I am super glad that you are still making progress in your recovery, even if slowly. Hope that you soon get to come to a show again. I know that would probably do wonders to your morale. In the meantime as you recover what do you do to keep yourself entertained/sane?

You are a treasure of this site. I think about you a lot. Definitely going to keep checking up on you.  

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For entertainment, I started following a few chess youtubers. Odd choice as I'm not a particularly good chess player, but I have found it interesting. I followed the recent candidates tournament pretty closely. Other things included reading and playing some slower paced games on my computer. I've also spent a great deal of time learning as much as I can about my condition since it is not well known and relatively little is out there. Had to do some digging...

There are other things going on that take my time and attention, some of which are not good (lets just say that I had to hire a lawyer). I've also had a couple short trips around Arizona, one to the Grand Canyon via the Grand Canyon Railroad, and the other was several days in the Sedona area. Sanity has varied depending upon the day, but I and my family are still holding it together. This has been extremely challenging for my wife, and I want to be sure to sing her praises - she is awesome!

I thank you for your kind words. I enjoy engaging on this site and hope to continue to do so. If you ever get bored and want to learn about a condition that happens at a rate 1/100th of heart attacks (so 100 heart attacks for each 1 of these) and kills at around a 60-80% rate let me know. Academically I find it very fascinating to learn as biology was my weakest science area (physical science for me!).

[MadisonBandMan1]

  On 7/16/2022 at 3:45 AM, TWHSParent said:

For entertainment, I started following a few chess youtubers. Odd choice as I'm not a particularly good chess player, but I have found it interesting. I followed the recent candidates tournament pretty closely. Other things included reading and playing some slower paced games on my computer. I've also spent a great deal of time learning as much as I can about my condition since it is not well known and relatively little is out there. Had to do some digging...

There are other things going on that take my time and attention, some of which are not good (lets just say that I had to hire a lawyer). I've also had a couple short trips around Arizona, one to the Grand Canyon via the Grand Canyon Railroad, and the other was several days in the Sedona area. Sanity has varied depending upon the day, but I and my family are still holding it together. This has been extremely challenging for my wife, and I want to be sure to sing her praises - she is awesome!

I thank you for your kind words. I enjoy engaging on this site and hope to continue to do so. If you ever get bored and want to learn about a condition that happens at a rate 1/100th of heart attacks (so 100 heart attacks for each 1 of these) and kills at around a 60-80% rate let me know. Academically I find it very fascinating to learn as biology was my weakest science area (physical science for me!).

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I have been wanting to ask about your condition for a while, I just felt like it wasn't my place, so of course I would love to learn about it. Chess is fun, and though I am also not very good at it, I have definitely found myself watching chess matches a few times when going down rabbit holes on YT. When I had my medical scare last month (still working through it) and didn't leave my bed for two weeks I found myself binge watching lawn care videos to fill my time. 

I am sorry about the lawyer thing by the way, I hope that issue is or can get resolved swiftly. You already have too much on your plate to deal with as it stands. I bet your wife is a champ, you certainly found the right person to be your wife it seems! Arizona is a beautiful state. Much better in the late fall/winter. The heat must be tough on you though texas isn't faring much better right now as it is. 

[TWHSParent]

  On 7/17/2022 at 5:39 AM, MadisonBandMan1 said:

I have been wanting to ask about your condition for a while, I just felt like it wasn't my place, so of course I would love to learn about it. Chess is fun, and though I am also not very good at it, I have definitely found myself watching chess matches a few times when going down rabbit holes on YT. When I had my medical scare last month (still working through it) and didn't leave my bed for two weeks I found myself binge watching lawn care videos to fill my time. 

I am sorry about the lawyer thing by the way, I hope that issue is or can get resolved swiftly. You already have too much on your plate to deal with as it stands. I bet your wife is a champ, you certainly found the right person to be your wife it seems! Arizona is a beautiful state. Much better in the late fall/winter. The heat must be tough on you though texas isn't faring much better right now as it is. 

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As a basic introduction try this video:

https://www.youtube.com/watch?v=GUagU8YrJZc

I've also attached one of the images of my current state from a MRI I had done last month. I annotated it (so not perfect). This is a side view of the aorta through my chest. The dissection continues all the way down the aorta into my left iliac artery.

[TWHSParent]

  On 6/4/2022 at 1:41 PM, LeanderMomma said:

I sure hope we get to see you again at BOA San Antonio some day!  You are definitely missed. 

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Well, it may not be San Antonio, but I am tentatively planning on attending at least Saturday at Grand Nationals this year (2023). With everything that happened in Arizona, my wife decided she couldn't stay there any longer, so we've packed up and moved back to the Cincinnati area. About 1.5 hours from Indianapolis.

[LeanderMomma]

  On 7/31/2023 at 7:40 PM, TWHSParent said:

Well, it may not be San Antonio, but I am tentatively planning on attending at least Saturday at Grand Nationals this year (2023). With everything that happened in Arizona, my wife decided she couldn't stay there any longer, so we've packed up and moved back to the Cincinnati area. About 1.5 hours from Indianapolis.

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Oh WOW!  That’s quite a move!

[TWHSParent]

  On 8/21/2023 at 1:45 AM, LeanderMomma said:

Oh WOW!  That’s quite a move!

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Yes, it is (we seem to love cross-country moving - NOT). We are closing on a house in Greendale, IN in mid-October.

I did just purchase tickets for Grand Nationals semi-finals and finals, so it looks like I will be there!

[packwick]

  On 9/21/2023 at 5:33 PM, TWHSParent said:

Yes, it is (we seem to love cross-country moving - NOT). We are closing on a house in Greendale, IN in mid-October.

I did just purchase tickets for Grand Nationals semi-finals and finals, so it looks like I will be there!

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yay! twhs has a great show this yr too, you'll enjoy it.

[packwick]

just keep your eyes peeled for the band that seems to be cosplaying as Pikachu, can't miss em.

[TWHSParent]

  On 9/21/2023 at 6:19 PM, packwick said:

just keep your eyes peeled for the band that seems to be cosplaying as Pikachu, can't miss em.

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I can definitely see the cosplay!