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Old 11-07-2012, 01:29 PM   #1
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Coping with illnesses

So I'm not looking for sympathy with this thread but more ideas on how to cope with a life long illness/disorder. I have a bicuspid aortic valve. For those of you that don't know what it means, when pumping out blood my aortic valve leaks some blood back into my left ventricle. Right now my valve isn't extremely bad but it has been labeled as a step 2 or moderate case, there is mild, moderate, and severe. This illness/disorder hasn't really limited me in life except for 2 major areas. 1 being that I can no longer go to the gym and work out as much as I once used to and 2nd was my future career. I was in ROTC training to join the army when I found out my heart had progressed from very very mild to moderate in a period of 4 months. This news meant I could no longer follow my lifelong dream of following the past 5 generations of my family by joining the military.

Now this disorder doesn't affect me much in my daily life but I have however found that somedays I will be very depressed when thinking of my inability to join the military and thinking about how fast my heart deteriorated.

Basically I'm just wondering if there are any other members on here that have to deal with diseases/illnesses/disorders like mine and how you guys cope with the depression that may come with it. Thanks guys.
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Old 11-07-2012, 01:49 PM   #2
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every now and then i get bummed out for having type 1 diabetes. Im insulin dependent for the rest of my life, granted that could change with advances in medicine
don't get me wrong, i can lead a normal healthy life with the disease through managing it, but there's that whole dependent part about it that im stuck hating. I cant just rely on myself anymore, i have to have medication.
I would kill to not have to worry all the time about my blood sugar!

i'm still at that age where i'm young and think i can do anything. I love backpacking and survival, but still in the back of my mind the truth is there, that i could never really survive without my diabetic supplies or proper food intake in a real survival situation. I know it may sound dumb to some of you for thinking like this, but that is big to me. i would love to live out in the wild and be self sufficient and practice survival skills for months to years on end, but I just cant. my lack of a properly working pancreas wont let me push my physical limits fully. Plus i have to watch what i eat at every meal. Its sad for me at thanksgiving.

But like i said, i love life. just don't think about it and don't let it set you back from enjoying life. for me i still can backpack, just plan week trips and enjoy nature.

cause you know what they say, It could always be worse, and im so thankful and blessed compared to others in this world.
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Old 11-07-2012, 01:54 PM   #3
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Yeah I gotcha. I'm on progressive meds my whole life now as well. The ones I take now don't affect me but as I get older they will get stronger and start limit what I'm able to do.y doctor told me there is a transplant they are working on that is a perfect match to my valve and will require only the same meds I'm on now but it is 10 years until it will be on the market. Unfortunately my doctor also said I will be extremely lucky if I make it that long. And I understand the loving life like I said its just something that comes up every once in a whole and really hinders my day/next couple of days.
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Old 11-07-2012, 01:57 PM   #4
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I have the same problem but with my tricuspid valve, but mine has not escalated since the doc found it at 16.
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Old 11-07-2012, 01:58 PM   #5
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Quote:
Originally Posted by Monster Coma View Post
So I'm not looking for sympathy with this thread but more ideas on how to cope with a life long illness/disorder. I have a bicuspid aortic valve. For those of you that don't know what it means, when pumping out blood my aortic valve leaks some blood back into my left ventricle. Right now my valve isn't extremely bad but it has been labeled as a step 2 or moderate case, there is mild, moderate, and severe. This illness/disorder hasn't really limited me in life except for 2 major areas. 1 being that I can no longer go to the gym and work out as much as I once used to and 2nd was my future career. I was in ROTC training to join the army when I found out my heart had progressed from very very mild to moderate in a period of 4 months. This news meant I could no longer follow my lifelong dream of following the past 5 generations of my family by joining the military.

Now this disorder doesn't affect me much in my daily life but I have however found that somedays I will be very depressed when thinking of my inability to join the military and thinking about how fast my heart deteriorated.

Basically I'm just wondering if there are any other members on here that have to deal with diseases/illnesses/disorders like mine and how you guys cope with the depression that may come with it. Thanks guys.

Have they discussed a valve replacement for you? I have something similar although it does not affect me now I know that in the next 10 years I will need a valve replacement. Honestly it scares the shit out of me and sometimes I lay awake at night while my wife and son sleep and get completely freaked out. I just have to remember there is nothing I can do about it, nothing that could have prevented it and it is just going to need to be dealt with. My son is a type 1 diabetic and he gets downs about it too sometimes, I am always amazed that he can stay as optimistic as he does most of the time. I guess you just have to accept some things and move forward the best you can.
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Old 11-07-2012, 03:02 PM   #6
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Quote:
Originally Posted by Jester243 View Post
Have they discussed a valve replacement for you? I have something similar although it does not affect me now I know that in the next 10 years I will need a valve replacement. Honestly it scares the shit out of me and sometimes I lay awake at night while my wife and son sleep and get completely freaked out. I just have to remember there is nothing I can do about it, nothing that could have prevented it and it is just going to need to be dealt with. My son is a type 1 diabetic and he gets downs about it too sometimes, I am always amazed that he can stay as optimistic as he does most of the time. I guess you just have to accept some things and move forward the best you can.

Yeah he has but I only have 2 options, pigs valve or artificial. I was told life span of a pigs vavle is 5-10 years and it worries me that I'd have to be under the knife that often as that's a tricky procedure. With the artificial I have to be on cumadine(sp?) the rest of my life. So according to that I have to get my vavle replaced every 5-10 years so say I live to 70(average life span) that would be 4-8 times or be on cumadine(sp?) for 40 years. I know it doesn't mean my life is over but would still suck.


Btw thanks guys, glad to have found a forum of such a great group of guys and gals.
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Old 11-07-2012, 04:17 PM   #7
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Sorry to hear the news man!

Take care of yourself and use this time to slow down and keep the "true meaning of life" in perspective! Love those around you and let them love you back!

Good luck brother!
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Old 11-07-2012, 07:59 PM   #8
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I'd do the pig valve sooner not later.

Before I met my wife her mother had an extended illness..don't remember all of it but she came back and had 5 years of good living after. She put off getting the valve replacement and by the time she was thinking of it she didn't have the strength to go through the surgery. She passed almost 7 yrs ago on Thanksgiving..69 years old way too young.

Not trying to scare you, just think of it that way and decide what you want to do.
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Old 11-07-2012, 08:08 PM   #9
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You may not be able to join the army, but you can still work for them as a civilian.
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Old 11-07-2012, 08:32 PM   #10
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I have my fair share of medical issues, the biggest two being knees and lungs. My heart isn't far behind tho, along with my shoulder and back. And I have a long line of history with family including some right now with far worse issues. And many that have passed away to it.

I just try and make the most of my life. Embrace all opportunities, since we truly never know what's coming tomorrow. Or the next day. or the next day.
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Old 11-08-2012, 04:11 AM   #11
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Quote:
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You may not be able to join the army, but you can still work for them as a civilian.
The route I'm trying to go now so we will see what happens.
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Old 11-12-2012, 09:44 PM   #12
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Life isnt easy trust me I know. I wish id have a normal life free of health problems and not being able to rely on myself. I made the "Anyone with lupus" thread (also in the health section here) because sometimes life just gets to you and it isnt easy to live with. But you just gotta keep going, everyday I wake up I'm happy I'm alive but not happy of where I am. Life has its down sometimes even too many downs but all you can do is keep going. My health problems are diffrent then yours but also limit my life in many ways. Just keep going bud
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Old 11-12-2012, 10:34 PM   #13
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In the case of my family, we struggle with mental illness. Lost both a grandmother, and most recently my only brother to suicide. Substance abuse is rampant in the family history (anything to quiet an out of control mind). My own struggle with severe anxiety and the resulting depression didn't start until I was 18 and entering my 2nd year of college. Imagine being smart enough to do anything, but unable to organize your mind enough to pull any of it off. That became my life. I never got the career I wanted. I never had kids for fear of passing this on to them. Most days it remains a monumental struggle to get out of bed. But I stick it out for my beautiful wife who has patiently stood by me for 15 years. And I stick it out for my parents, who could not survive losing their final child. And I stick it out to walk with, and serve others who struggle as I do, but might not have as strong a support system.

Mostly though, I've learned to appreciate the simple things. A sunset. Wildflowers. Good beer with friends. My wife's smile. Honest discussions like this. And I meditate. In silence I find peace of mind.

Spend time with loved ones, brother. Appreciate your family and friends. Take time to stop once in a while and find the blessings in your life. They're there. Don't let the things you didn't get overshadow the many that you did. No guarantees in this life for any of us. Some of the saddest people I know are the wealthiest. Some of the most tranquil, the sickest. You didn't choose this. But you can choose how to live with it. If you're a reader, check out Jon Kabat-Zinn's book Full Catastrophe Living. It's about living well in the face of catastrophic and even terminal illness. Be well, brother.
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Old 11-12-2012, 11:05 PM   #14
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Not heart related....but this past spring, I had an MRI for my upper back & neck. What we thought would've been a herniated or slipped disc, turned out to be something different. A thickened spinal ligament and *Arnold Chairi* malformation. Long story short...this malformation is when the brain droops down into the spinal column (isn't cupped in the skull).

Like you - I was told to 'take it easy', no more lifting weights at the gym.... and be 'mindful' of my upper body & neck. Just lovely......I'd been going to the gym for years & years prior to this.

The Chairi malformation primarily causes 'off balance' feelings & lots of headaches. And believe me....from time to time as I walk, I suddenly veer off to one side (off balance). It's kinda scary...

For me....once I heard the news, I immediately searched the internet for support groups & forums. If anything - to read about other people and what they've gone thru, what to look for, how to handle things when/if they get worse. I haven't talked much with those folks - I'm just a 'reader' simply because my symptoms aren't nearly as bad as some of the stuff I've read - and I'm lucky...........but at the same time, I'm scared as shit of how bad it could get as I get older. There are operations....but they aren't always a cure all....

Hang in there....talking, typing, and venting is the best!!
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