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I dodged a bullet.

Bigguns50

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This touches on several subjects so I hope it belongs here.

The Diagnosis.

I was recently diagnosed with Hemochromatosis. This is a fairly common disease that many people don’t know they have. It can be a killer though... so men, especially if you're over 40....Get your Iron checked !!!

My body has a defective gene (Hemochromatosis) and it doesn’t regulate Iron uptake. Iron gets stored up and goes into ‘overload’. Stored everywhere and in all organs.... my Doc said, "It's like rust. Little things start to go wrong...then break... and eventually you fall apart (die)." To get the Iron out, I had 2 Phlebotomies (they take out a pint of blood at each session).

In addition to the iron build up, my Hemoglobin and Hematocrit were off the chart (think blood clots and strokes). Losing the blood also lowered these.

So now...I'm good...actually better than good....I feel better than I've felt in years … and I didn’t feel bad ! I just have to get blood draws every 3 wks to monitor for a while and get Phlebotomies as needed . Basically....I dodged a bullet. The cross hairs were on my head... the trigger pulled... the bullet on it's way....and I moved….. just in time.


Life is about experiences.


Knowing the possible outcomes of my tests (One was Cancer) challenged me. I know Worry is a waste of energy. Even so....I'm only human.

My faith was also challenged...but I stand strong.

I had blood drawn from an artery in my wrist….yea...that hurt like Hell ! I had 2 IV’s stuck in me at once for an hour. I was injected with a radioactive ‘tracer’. I had more blood draws in two weeks than I’ve had my entire life. I had ultrasounds of every organ. I’m a pretty tough guy so all this was fine.....not fun, but fine. It was difficult because I’ve always been healthy and I wasn’t used to all this.


The Cancer Center.


My Hematologist (blood doctor) works out of a Cancer Center. I've never stepped foot inside a cancer center before. This was a very, very moving experience for me. There are a LOT of sick people out there. If I were to see some of these people on the street, I wouldn’t know they have cancer….others….it is obvious.

My Phlebotomies were done in a large room where other patients were receiving treatment for their disease. Their children, Husbands and Wives were with them. One patient's Sister had been by her side for a month (she took work off..no pay). One patient was a 22 year old girl....her Mother sat with her, holding her hand. She covered her with a blanket from home to help keep her warm.

My Wife said to me, ”Oh, it was depressing.” No…..it wasn’t. There was a LOT of love there. It was clear to me that much of the staff loved what they did. I saw it in their eyes...in the way they looked at and talked with patients...the way they helped them.

The patients were all ages, all ethnic backgrounds, all levels of financial status…...and no one cared about any of that. They were so nice, so polite, so real. It was amazing to me.

Everyone was hanging on to life. Fighting.


Compassion…

Because of my experience, my level of compassion has risen to a level I’ve never before experienced. I filled out an application online to volunteer in any way I can at that Cancer Center. Today I got a call. After a lengthy conversation, I was told someone would call me soon to start the process of becoming a Spiritual Counselor. I am honored.
 
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Iwokeup

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Well said, man! And congrats on getting a good diagnosis. :)
 

Bigguns50

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@Iwokeup Thanks Doc. I thought of you a few times because I ran across a pretty big problem being a patient. I'll PM you...maybe there's something there for you fix.
 

GIlman

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Regular blood donations are actually believed to quite beneficial for men. Iron comes in but does not get out of our bodies easily. When we were in med school one of our professors said he believed that a lot of increased life expectancy for women over men was because they are always losing blood, and hence losing iron.

I do not know that this has been studied, since it would be a very long study to conduct (think like 50 years or longer), but I've always hedged my bet that this is true.

His suggestion for men was to only take multivitamins without iron, unless you don't eat meat. And to donate blood regularly, don't remember specifically but I think he said every 3 months or more.

Blood donation = elective phlebotomy.

@Bigguns50 I'm glad you caught it early and got the care you needed.

Please note: this is NOT intended to be and should not be considered medical advice for anyone, I am just relaying an experience from medical school. Obviously the appropriateness of this may be different for different people, and you should consult with your personal doctor to see if it's appropriate for you.


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jon.a

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I'm not following the science here.
If you draw x amount of blood, isn't the percentage of bad stuff the same in the remaining supply?
Are they adding a "filler" to dilute the blood?
 

GIlman

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John. The problem is a build up of iron stores in the body. It's not the amount of iron in the blood per se, as this is regulated by various systems in your body. But the excess iron is deposited or stored in organs like the liver.

It takes iron to create new red blood cells, this iron is pulled from the iron stores in the body.

There are proteins in the blood that also bind to free iron. When you have proteins that are not filled with iron it helps draw iron from other places.

Think of it like fat. If you eat too many calories your body stores those excess calories as fat. If you decrease your calorie intake your body starts accessing those fat stores.

Iron doesn't quite work the same way, since it's hard to decrease the intake low enough. But removing blood is basically equivalent to Lipo, it's reducing the total quantity of iron so other iron has to be drawn from body stores to create new red blood cells.


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jon.a

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John. The problem is a build up of iron stores in the body.

It takes iron to create new red blood cells, this iron is pulled from the iron stores in the body.

There are proteins in the blood that also bind to free iron. When you have proteins that are not filled with iron it helps draw iron from other places.

Thing of it like fat. If you eat too many calories your body stores those excess calories as fat. If you decrease your calorie intake your body starts accessing those fat stores.

Iron doesn't quite work the same way, since it's hard to decrease the intake low enough. But removing blood is basically equivalent to Lipo, it's reducing the total quantity of iron do it has to be drawn from other stores to create new red blood cells.


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So it's the simple quantity not PPM?
 
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GIlman

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The big thing is total body iron, because the body can move iron between tissues and blood. The amount of iron is increased everywhere in hemochromatosis.

But, we test the blood because it's easy and low risk.

The ppm in the blood will be higher than normal (it's called total iron though because iron is largely bound to proteins not free in the blood), but it is just the tip of the iceberg, and is how hemochromatosis is picked up to begin with.

Because there are stores of iron outside of the bloodstream, and iron can deposit into pretty much all your tissues. In the pancreas this leads to diabetes, in the heart heart disease, in the liver cirrhosis, etc.

The actual disease hemochromatosis is largely genetic as I recall. So it is a breakdown of the normal systems.

Even if men do not have abnormally high iron, iron itself is related to free radical production, and free radicals are related to lots of things including cancer.

But many men have excess iron (or at least high normal) because we don't lose blood every month, and although the levels of iron are not nearly as great as in hemochromatosis, some of the increase in things like heart disease in men compared to women seems to be related to the higher iron load men have compared to women.

In Fact if you look at heart disease in women it increased substantially after menopause, many believe this is because or at least related in some part to not losing blood (I.e. Iron) monthly.


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Bigguns50

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@GIlman ... excellent explanation and examples ! I hope enough men here take this Iron thing seriously and just get it checked with their next physical.
 

Bigguns50

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After many weeks, and 5 Phlebotomies, all my numbers are good. I go for another blood draw in 4 days to check again .(my last check was 2.5 wks ago). It was pretty cool walking out of the Center with all my blood.

I also received a call back from Beaumont Hospital Volunteer Services. I will be attending some orientations and meeting with the Priest that heads the Spiritual Advisor arm of the services.
 
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Bigguns50

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Just a note. I have a 3 month hiatus from blood draws. I'm in what's called the "Maintenance mode". They'll probably have to thin me out again but everyone's different as to how often they need a phylebotamy. I feel good, training is good and "Life is Good".

I had a 2 hr orientation at the Beaumont hospital here for volunteer work. It's a long, detailed process but I'm looking forward to doing it.
 

hellolin

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This touches on several subjects so I hope it belongs here.

The Diagnosis.

I was recently diagnosed with Hemochromatosis. This is a fairly common disease that many people don’t know they have. It can be a killer though... so men, especially if you're over 40....Get your Iron checked !!!

My body has a defective gene (Hemochromatosis) and it doesn’t regulate Iron uptake. Iron gets stored up and goes into ‘overload’. Stored everywhere and in all organs.... my Doc said, "It's like rust. Little things start to go wrong...then break... and eventually you fall apart (die)." To get the Iron out, I had 2 Phlebotomies (they take out a pint of blood at each session).

In addition to the iron build up, my Hemoglobin and Hematocrit were off the chart (think blood clots and strokes). Losing the blood also lowered these.

So now...I'm good...actually better than good....I feel better than I've felt in years … and I didn’t feel bad ! I just have to get blood draws every 3 wks to monitor for a while and get Phlebotomies as needed . Basically....I dodged a bullet. The cross hairs were on my head... the trigger pulled... the bullet on it's way....and I moved….. just in time.


Life is about experiences.


Knowing the possible outcomes of my tests (One was Cancer) challenged me. I know Worry is a waste of energy. Even so....I'm only human.

My faith was also challenged...but I stand strong.

I had blood drawn from an artery in my wrist….yea...that hurt like Hell ! I had 2 IV’s stuck in me at once for an hour. I was injected with a radioactive ‘tracer’. I had more blood draws in two weeks than I’ve had my entire life. I had ultrasounds of every organ. I’m a pretty tough guy so all this was fine.....not fun, but fine. It was difficult because I’ve always been healthy and I wasn’t used to all this.


The Cancer Center.


My Hematologist (blood doctor) works out of a Cancer Center. I've never stepped foot inside a cancer center before. This was a very, very moving experience for me. There are a LOT of sick people out there. If I were to see some of these people on the street, I wouldn’t know they have cancer….others….it is obvious.

My Phlebotomies were done in a large room where other patients were receiving treatment for their disease. Their children, Husbands and Wives were with them. One patient's Sister had been by her side for a month (she took work off..no pay). One patient was a 22 year old girl....her Mother sat with her, holding her hand. She covered her with a blanket from home to help keep her warm.

My Wife said to me, ”Oh, it was depressing.” No…..it wasn’t. There was a LOT of love there. It was clear to me that much of the staff loved what they did. I saw it in their eyes...in the way they looked at and talked with patients...the way they helped them.

The patients were all ages, all ethnic backgrounds, all levels of financial status…...and no one cared about any of that. They were so nice, so polite, so real. It was amazing to me.

Everyone was hanging on to life. Fighting.


Compassion…

Because of my experience, my level of compassion has risen to a level I’ve never before experienced. I filled out an application online to volunteer in any way I can at that Cancer Center. Today I got a call. After a lengthy conversation, I was told someone would call me soon to start the process of becoming a Spiritual Counselor. I am honored.

There is a story on ESPN about a guy that's just like you, except he is a greenbay packer's season ticket holder and they did a short story on him, by Rick Reilly nonetheless, you should check it out.
 

Bigguns50

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Just a short update.

3 Months and 3 weeks since my last Phlebotomy. I had an Iron Study, among other things, done Friday. I have a follow up w/ my Doc this Friday. The results are complicated and as much reading and studying that I've done, I'm a bit confused. Seems quit complicated.

Iron / Ferritin is low...just 5 points below normal but damn have I felt it ! Tired, tired, tired. Hemoglobin is good, as is Hematocrit.

Damn hard to push forward but I'm doing everything I can to feel as good as I can. No quitting.
 

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Congratulations on having the 'fighter-gene'. One theory of the mutation is that it was previously beneficial since you could recover faster from a blood loss(after fighting saber tooth tigers or other enemies) because of the iron stored.
 
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Bigguns50

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Congratulations on having the 'fighter-gene'.
Thanks ! I've read the same theory. Makes sense.

You know....my Hematologist wants my numbers to be as close to perfect as possible. Good intentions. But....this human body is one complex machine and everyone's different. I think maybe, the numbers are a good guideline ( they have ranges ) but I'm not convinced we should aim for perfection. Maybe my Hemoglobin for my body is suppose to be right in the middle of the range, or slightly above....not the low end which is what she was trying to hit. Anyway, I'll find out more Friday.
 

Bigguns50

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Back from the Doctor's and all is good (As the choir in the background sings " Hallelujah " ).

I don't care how old or young you are. I don't care how "in shape" you think you are.

Don't be a pussy and GET YOUR F*ckING PHYSICAL already !!
 

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Bigguns50

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@Traveling Morgue . Yes Sir. Of course....with almost everything, there are consequences. My Iron is now low, which means I am fatigued most of the time. But guess what ?

I don't care !

Seriously. It's a manageable disease. And of course there's

COFFEE ! :wideyed:

Biggest lesson learned this past year is ANYTHING CAN HAPPEN TO ANYONE AT ANY TIME. Period. No one is exempt. The worse thing you can do is think you are.

Make today count !!!!
 

Bigguns50

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Hey @Kung Fu Steve .... I found myself educating my Doctor today at the end of my visit. Three times I've seen her and 3 times she's mentioned about not being able to loose weight and get in shape. I spewed out setting a Goal, Focusing, Visualizing,....and more. She took it in and thanked me. Cool moment.
 

Kung Fu Steve

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Hey @Kung Fu Steve .... I found myself educating my Doctor today at the end of my visit. Three times I've seen her and 3 times she's mentioned about not being able to loose weight and get in shape. I spewed out setting a Goal, Focusing, Visualizing,....and more. She took it in and thanked me. Cool moment.

I have mixed feelings about this. While it's cool you're helping her... your doctor shouldn't be fat.

You maaaaaaaaaayy want to look for a healthy doctor. Just sayin'...

But I'm glad you're staying on top of your health and helping others!!
 
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Bigguns50

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Kung Fu Steve

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I didn't mean to imply she's fat. I couldn't tell because of the lab coat so I don't think she's obese....just not happy with her body.

Thanks...helping is good.

Hahaha you had me worried!
 

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I have mixed feelings about this. While it's cool you're helping her... your doctor shouldn't be fat.

You maaaaaaaaaayy want to look for a healthy doctor. Just sayin'...
Ha Ha, I'm glad I'm not the only one! I've found it challenging to take advice from a medical professional that is obviously overweight, a smoker, or has poor oral hygiene, etc. If their medical advice is truly valuable, why wouldn't they be applying it to their own lives? I suppose they're only human after all...
 
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Bigguns50

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Ha Ha, I'm glad I'm not the only one! I've found it challenging to take advice from a medical professional that is obviously overweight, a smoker, or has poor oral hygiene, etc. If their medical advice is truly valuable, why wouldn't they be applying it to their own lives? I suppose they're only human after all...

I actually have...4 different Doctors. She's the only one with a weight issue....and that issue is really a symptom of another problem/s, obviously.

My primary care physician has been into bodybuilding and health for many years. He's also a philanthropist. I love talking with him. His number one priority is helping people. His second priority is 'keeping the lights on'. And from what I've seen.....he does VERY well financially. Funny how that works right ?
 

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