FoolKiller Becomes Bionic - NEW UPDATE Nov 19, 2012

[Solid Lifters]

Great news! Should make the holidays a relief and happy one.

 

[FoolKiller]

That's great to hear. I take it they still recommend a transplant and that you're still waiting?

There is no way around needing it. The heart doesn't heal from being worn out. I just took off all extra stress and slowed down the rate of degradation. You know, like sticking it in the refrigerator.

Ironically, the primary trick to preserving my heart was to reduce my salt (a preservative) intake. Who knew? Well, other than, you know, science.

Great news! Should make the holidays a relief and happy one.

When they told me the Monday before Thanksgiving was open and I knew that I would have three days of no driving, heavy lifting, or any exertion (including stairs) I realized that if all went well I would have one day of discomfort out of a nine day holiday. To me, the timing seemed perfect. Apparently no one else feels that way as there was almost no one at the hospital and they were sending Surgical Recovery nurses home early.

I know that I risked ruining my Thanksgiving holiday, but getting stuck in the hospital and missing my divorced parents making everyone uncomfortable seemed like it would be a fair trade. My parents have been getting along so poorly lately that my brother and I had discussed canceling the big meal and separating things. So, really I would have just been saving us all trouble. But now if it gets bad I can use my health to guilt trip them with "Is this the last experience you want me to have with you all if I take a sudden turn for the worse?" It won't be the first time my brother and/or I have used my health to make them see how petty their petty BS is.

 

[Omnis]

I will make my mashed potatoes extra bland in your honor.

 

[Solid Lifters]

There is no way around needing it. The heart doesn't heal from being worn out. I just took off all extra stress and slowed down the rate of degradation. You know, like sticking it in the refrigerator.

Ironically, the primary trick to preserving my heart was to reduce my salt (a preservative) intake. Who knew? Well, other than, you know, science.


When they told me the Monday before Thanksgiving was open and I knew that I would have three days of no driving, heavy lifting, or any exertion (including stairs) I realized that if all went well I would have one day of discomfort out of a nine day holiday. To me, the timing seemed perfect. Apparently no one else feels that way as there was almost no one at the hospital and they were sending Surgical Recovery nurses home early.

I know that I risked ruining my Thanksgiving holiday, but getting stuck in the hospital and missing my divorced parents making everyone uncomfortable seemed like it would be a fair trade. My parents have been getting along so poorly lately that my brother and I had discussed canceling the big meal and separating things. So, really I would have just been saving us all trouble. But now if it gets bad I can use my health to guilt trip them with "Is this the last experience you want me to have with you all if I take a sudden turn for the worse?" It won't be the first time my brother and/or I have used my health to make them see how petty their petty BS is.

Wow, sorry to hear that, man. Family is supposed to come first during times like this. Looks like folks are too busy wrapped in thier own BS to come together.

But hey, you've got your brother, wife and daughter so it's not all a total lost. If your mom and dad do come over, have your wife have a 'chat' with them explaining how you need peace, love and good-happiness stuff while they're there or dinner is going to be canceled.

Best of luck, take it easy and just don't think about all the family BS that's going on. Happy Thanksgiving!

 

[photonrider]

Good luck, FK. Hope to see you back on your feet soon, climbing rocks, welding shovels, etc, etc, etc.. . .



Harry.

 

[Shaun]

Fantastic news mate. 👍
You don't need me to tell you but keep it up.

Cheers Shaun.

 

[Pako]

In short, the updates haven't been coming because all is good.

No news is good news. That is incredible!

 

[UnoMOTO]

👍 Nice, I am glad to hear everything is moving in the right direction!

 

[Dennisch]

Today I had my annual diagnostic heart cath. They kept me awake through this one, which meant that I felt things no one should.

Is that where they start in you groin, and fiddle something up towards your heart?

But good to see all is well. 👍

 

[FoolKiller]

I will make my mashed potatoes extra bland in your honor.

No need. Just add one of these:

Between 60-80mg of sodium per serving. vs 500+mg in salt. They also make Ranch, various cheese flavors, and even a bacon cheddar. Its meant for popcorn but I use it on chips, potatoes, fries, veggies, meats, dips, etc.

And on my diet, I am allowed this:

Wow, sorry to hear that, man. Family is supposed to come first during times like this. Looks like folks are too busy wrapped in thier own BS to come together.

But hey, you've got your brother, wife and daughter so it's not all a total lost. If your mom and dad do come over, have your wife have a 'chat' with them explaining how you need peace, love and good-happiness stuff while they're there or dinner is going to be canceled.

Best of luck, take it easy and just don't think about all the family BS that's going on. Happy Thanksgiving!

We've dealt with it for 21 years. Now that our own kids are getting old enough to notice we are thinking of intervening. My dad use to be quick to anger and just violent enough to get child services to intervene during the custody battle. My brother and I used to fear him. He was big, strong, and loud. Now he is old, uses a cane, and I have had to come to terms with my own mortality. My dad can be loud but the fear is gone. My brother and I are discussing the best way to handle the situation right now. We are pretty much going to lay down an ultimatum that it stops or they won't be very involved in their grandkids' lives. We are just waiting for the first kid to notice the tension so that we have evidence of them affecting their grandkids.

My brother has had to say something to them in the past. When I was told I needed a transplant they kept arguing in the hospital to the point the doctors
noticed and offered to say something on my behalf because it was the last thing I needed. My brother ended up sending them both an email telling them to grow up. That got everything to a very quiet and tense state that is now beginning to fall apart again.

Is that where they start in you groin, and fiddle something up towards your heart?

Yes, that's the one. And while you don't feel a touch on the inside of a blood vessel or your heart, you do feel a moving sensation. And when they touched the inside of my heart wall it "tickled" the heart and made it go into an arrhythmia for a few seconds. And then when they pull it out, it's similar to the feel of whipping a belt through the belt loops on a pair of pants, only inside your leg. The fact that you hear a <fwip> sound doesn't help.

 

[Crash]

Congrats FK! That's really good news to hear!

 

[niky]

Having both witnessed messy separations from the inside and slightly outside, I think the fighting is sometimes better than cold silence. At least you know they actually care, in a way.

Nu-Salt... I gotta get me some of that.

 

[Danoff]

You need to make a low sodium thread where you give us tips on how to remove salt from our diets. I think it would benefit everyone here and you've obviously found some creative ways to do it.

 

[Solid Lifters]

Nu Salt is not a preservative like salt, so I can't make homemade beef jerky with it, I take it? And, I take it, it can't denature proteins like salt so I can't use it in a brine, either? That's where the most of my salt comes from.

Yeah, I gotta watch the salt intake, too. No chips, frozen foods or canned foods anymore. I have to eat low sodium or sodium free nuts, too. It's just not the same, but still good stuff.

 

[Touring Mars]

Awesome FK 👍👍

It's great to hear that you are surpassing expectations so well - and long may that continue. Very happy for you and your family!

 

[FoolKiller]

Having both witnessed messy separations from the inside and slightly outside, I think the fighting is sometimes better than cold silence. At least you know they actually care, in a way.

It's their own petty crap, especially on my Dad's side. He gets angry that he has to interact with my mom, despite the fact they were married 22 years and had 2 kids together. He acts like she did something to him when he had the affair and left.

Nu-Salt... I gotta get me some of that.

Nu-Salt, No-Salt, Also Salt, and Morton's Salt Substitute are all brands I've tried. They are more bitter than salt so you need to balance it out for your recipes based on taste. I tend to buy whichever is cheapest, but if cost were no option Nu-Salt and Also Salt are the better brands flavor-wise in my opinion. Bought in bulk on Amazon Nu-Salt runs half the price of other brands. By the bottle it is all similar.

You need to make a low sodium thread where you give us tips on how to remove salt from our diets. I think it would benefit everyone here and you've obviously found some creative ways to do it.

I've contemplated it, but there is an adjustment period. I was miserable for the first few months. Plus it would need a giant warning as some people, particularly on diuretics, may be potassium sensitive and the salt substitutes are potassium chloride. That is fine for me, as even with prescription supplements my levels are still low, but if your potassium gets too low or too high it can cause heart issues, including heart failure (like the girl that died from drinking too much Coca-Cola a while back).

Plus, what I think is good, others might not.

And then some recipes require replacing salt by spiking acids or spices.
How sour do you like your pickles? How hot do you like your banana peppers?

Those will hurt a guy with an ulcer.

Nu Salt is not a preservative like salt, so I can't make homemade beef jerky with it, I take it? And, I take it, it can't denature proteins like salt so I can't use it in a brine, either? That's where the most of my salt comes from.

In the amount necessary for preservation it will ruin the taste. That said, unless you are taking jerky as food for camping or hunting for a week straight a moderate amount of KCl and dehydration or smoking with some low amounts of sodium (low sodium != no sodium) and refrigeration storage can give decent results. It is best on a spicy jerky, where the primary flavor comes from spices rather than the curing.

As for brining, no KCl will not denature proteins. Acids do. I have a closet full of vinegars and have a large supply of lemon juice on handat all times.

The other thing, if you can find it, is salt petre, or potassium nitrate along with KCl. But you have to be very careful with your amounts. I found some food grade at an Amish market, but haven't used it yet, because a personal supply of any cured meats will use barely a pinch.

I do make my own sausage, but it is cooked immediately and eaten or frozen after it is seasoned, without curing. I also buy uncured bacon. Curing is a sodium or nitrate/nitrite process, none of which is great for heart health.

Yeah, I gotta watch the salt intake, too. No chips, frozen foods or canned foods anymore. I have to eat low sodium or sodium free nuts, too. It's just not the same, but still good stuff.

Frozen is fine, if it hasn't been processed, which means no meats. But you can get frozen veggies that are sodium free or very low. Canned can be gotten in low sodium or no salt added varieties. I have a pantry full of canned vegetables, beans and tuna. All tuna brands make a low sodium or very low sodium variety and every major grocery chain will have at least one of them stocked.

Chips are tricky. Tortillas are easy to get low sodium, but potato chips are difficult. Lays does make a reduced sodium chip, as does Fritos. Lays also has many of their new Kettle Cooked varieties that are low sodium (less than 140mg) so they offer some reprieve. The other option is to get unsalted chips and then add the Kernel's Seasonings I posted above to them. I also put their nacho cheddar on some tortillas with spray oil (so it sticks). And a touch of chili powder to make a close Doritos chip.

Cheetos are out. Sorry. They cannot be replicated at home.


But since I know you like to hunt, look up Benson's seasoning. They have many sodium free seasonings designed for game meat.

 

[Neal]

Nice to come on here and find such brilliant news, nice one mate :tup:

 

[Crash]

Ironically, the primary trick to preserving my heart was to reduce my salt (a preservative) intake. Who knew? Well, other than, you know, science.

Can you eat naturally salty foods like oysters or shellfish? Or are those a no-no?

 

[FoolKiller]

Can you eat naturally salty foods like oysters or shellfish? Or are those a no-no?

I can, but in moderation. But sodium can be bad in all forms. I need sodium (we all do), so it is a matter of moderation. But there is no healthy sodium, no matter where it comes from. Whether it be sodium chloride (table salt), sodium bicarbonate (baking soda), or monosodium glutamate (MSG, flavor enhancer) it is all a form of sodium and I must watch my intake.

 

[Watchman]

 

 

[Solid Lifters]

It's their own petty crap, especially on my Dad's side. He gets angry that he has to interact with my mom, despite the fact they were married 22 years and had 2 kids together. He acts like she did something to him when he had the affair and left.


Nu-Salt, No-Salt, Also Salt, and Morton's Salt Substitute are all brands I've tried. They are more bitter than salt so you need to balance it out for your recipes based on taste. I tend to buy whichever is cheapest, but if cost were no option Nu-Salt and Also Salt are the better brands flavor-wise in my opinion. Bought in bulk on Amazon Nu-Salt runs half the price of other brands. By the bottle it is all similar.


I've contemplated it, but there is an adjustment period. I was miserable for the first few months. Plus it would need a giant warning as some people, particularly on diuretics, may be potassium sensitive and the salt substitutes are potassium chloride. That is fine for me, as even with prescription supplements my levels are still low, but if your potassium gets too low or too high it can cause heart issues, including heart failure (like the girl that died from drinking too much Coca-Cola a while back).

Plus, what I think is good, others might not.

And then some recipes require replacing salt by spiking acids or spices.
How sour do you like your pickles? How hot do you like your banana peppers?

Those will hurt a guy with an ulcer.



In the amount necessary for preservation it will ruin the taste. That said, unless you are taking jerky as food for camping or hunting for a week straight a moderate amount of KCl and dehydration or smoking with some low amounts of sodium (low sodium != no sodium) and refrigeration storage can give decent results. It is best on a spicy jerky, where the primary flavor comes from spices rather than the curing.

As for brining, no KCl will not denature proteins. Acids do. I have a closet full of vinegars and have a large supply of lemon juice on handat all times.

The other thing, if you can find it, is salt petre, or potassium nitrate along with KCl. But you have to be very careful with your amounts. I found some food grade at an Amish market, but haven't used it yet, because a personal supply of any cured meats will use barely a pinch.

I do make my own sausage, but it is cooked immediately and eaten or frozen after it is seasoned, without curing. I also buy uncured bacon. Curing is a sodium or nitrate/nitrite process, none of which is great for heart health.


Frozen is fine, if it hasn't been processed, which means no meats. But you can get frozen veggies that are sodium free or very low. Canned can be gotten in low sodium or no salt added varieties. I have a pantry full of canned vegetables, beans and tuna. All tuna brands make a low sodium or very low sodium variety and every major grocery chain will have at least one of them stocked.

Chips are tricky. Tortillas are easy to get low sodium, but potato chips are difficult. Lays does make a reduced sodium chip, as does Fritos. Lays also has many of their new Kettle Cooked varieties that are low sodium (less than 140mg) so they offer some reprieve. The other option is to get unsalted chips and then add the Kernel's Seasonings I posted above to them. I also put their nacho cheddar on some tortillas with spray oil (so it sticks). And a touch of chili powder to make a close Doritos chip.

Cheetos are out. Sorry. They cannot be replicated at home.


But since I know you like to hunt, look up Benson's seasoning. They have many sodium free seasonings designed for game meat.

Good tips there, thanks. I've tried the 'no salt' seasonings before, I don't like them very much. They don't have a 'salt' taste to them, only a herb taste. But, I'll give the 'Nu Salt' stuff a shot.

Yes, I'd pickle more but I can't substitute for a salt and sugar brine for meat, though. Vinegar will denature proteins but it also cooks the meat at the same time which hinders osmosis and therefor a dry and now overly tangy-sour piece a meat. Plus, I'm not a HUGE fan of Sauerbraten, but I'll eat it every once in a blue moon.

 

[FoolKiller]

You need to make a low sodium thread where you give us tips on how to remove salt from our diets. I think it would benefit everyone here and you've obviously found some creative ways to do it.

Good tips there, thanks. I've tried the 'no salt' seasonings before, I don't like them very much. They don't have a 'salt' taste to them, only a herb taste. But, I'll give the 'Nu Salt' stuff a shot.

Well, after some thought, and realizing this food discussion has gone over a page on my settings, I took Dan's advice.


My low sodium thread is here:
https://www.gtplanet.net/forum/showthread.php?p=7835344#post7835344

I already added two recipes.

 

[FoolKiller]

Thanks for the well wishes all. I had intended to update before now, but they opted to keep me in the hospital for two days to use the IV diuretics to get the fluid out of my body. I lost nearly seven pounds in 24 hours, and about two liters of water per day. Now I am home. Due to being on blood thinners and recovering from an incision in an artery I am not allowed to return to work until Tuesday and no driving until Friday. So, my father will be driving me to and from work Tuesday through Thursday. After the diuretics regimen I feel a lot better now.

However, that is pretty much the only good news I received. The heart cath took about 45 minutes total because the results were blatantly obvious. When I woke up my family were telling me that the doctor said the conduit is pinched pretty bad and is nearly closed off. They wanted to do surgery very soon. It was a bit more shocking than I had expected, discovering I was pretty much closing in on death. Everyone but my wife left the room to give us some time.

I regained my composure and everyone came back, but a few hours later the doctor came back in to check on me. That was when he informed me that another doctor in the practice, one of the founders of the practice and has been my main cardiologist my entire life, had a different opinion. Looking at the readings from the other side of the heart he feels that it may have been compensating for too long and is worn out. He is afraid I can't survive a conduit replacement surgery. He feels the whole heart is worn out and if they do a surgery like that where they stop the heart to put me on a heart lung machine and then restart it when they are finished that it won't be able to restart. In his eyes the surgery is too risky.

He feels my only option is a heart transplant.

Of course, we all asked a million questions, but none of them changed the outcome. I found that what doctors call "survivability rates" can quickly translate into death rates in your mind.

Since then I have been in total shock. My two doctors disagree, but the one that has been the primary decider my entire life has the more gloom outcome. It may be a transplant, or it may be simple surgery. We also sent all test results to my first surgeon, who is now head of the cardiovascular surgery team at the Cleveland Clinic. He saved my life when I was six, and hardly anyone had heard of my condition, and he placed me on the treatment after my second surgery that has kept me going for the last 17 years. We have a lot of faith in him.

So right now I wait. The heart board meets on Monday and they will decide the final recommended course of action. Then I should get the second opinion by the end of the week.

But for now, out of everyone that has given their opinion, the doctor I have the most faith in is telling me that I need a heart transplant. I am still trying to wrap my head around that and everything that goes with it.

It has been four years since I made this post. Today is the 4th anniversary of being told I would need a transplant.

It was also the day I was told I had less than a year before I would be stuck in a hospital bed. Less than a year.

Today, I woke up, got ready for work, fought with my daughter, had annoying meetings, and found out that I will have to work our booth at the state fair for the next four days because the woman who was doing it had to leave when her husband had a heart attack. The irony is staggering.

But I still haven't received a transplant. I still wait. In the last four years I've had to have damaged leg veins treated twice, had numerous heart caths and stress tests, spent more than a month's worth of days in the hospital, and been defibrillated out of approaching cardiac arrest twice. I have been through two medicine changes to control my irregular heart beats. I take 14 different medicines. I take 10 pills in the morning (11 on Fridays, 12 on Mondays, and 13 on Wednesdays), four pills in the afternoon, and another 10 pills at night. Three of my medicines are to pull excess fluid off my body. Two of those medicines are to counteract the electrolyte loss caused by the previous three. Three medicines are for allergies, because if I struggle to breath I stress the heart. One is a blood thinner. Two are to help reduce the effect of the heart failure. Two prevent irregular heartbeats. And the final one is Vitamin D, because it is low to the point of my bones hurting otherwise.

That's the easy part. I have an app that tracks my medicines, reminding me when to take them. The hard part is the low sodium diet. I've learned a million tricks to cook food, but it all requires time. Some nights cooking dinner makes me tired. I have to sit down while my wife and daughter get their food. I'd ask my wife to do it, but she doesn't know my tricks and cooking is the only thing I can still do to help out around the house. I can't lift my daughter, do yard work, or push a vacuum back and forth for an extended period. And cooking is therapy. When I need to relieve stress I go into the kitchen and cook up large amounts of sauce, broth, pizza dough, or pickle something. I will create new recipes.

I also exercise regularly. I try to walk 1-2 miles at least three times a week.

This is not a sob story. This is why I am not in a hospital three years past the best estimate doctors could make. People try fad diets, weird workout regimes, and a million other things. The fact is a simple healthy and balanced diet with just gentle exercise can make a quickly deteriorating heart failure slow down to a barely perceptible crawl.

But there is another aspect as well. Mental health. That post from four years ago was the only place I recorded what happened that day. We didn't tell people my situation until we had final confirmation by the full heart board and second opinions out of the Cleveland Clinic. In light of not wanting to freak people out unnecessarily, but I needed to get it off my chest. I came here. It felt safe. What I received, and do to this day, was pure support. This community was the only thing I had to lean on for six weeks. It kept me sane. It kept me feeling like I was normal.

So the point of this post is to say, "Thank you, GTPlanet." It's been four years and what I have worked to do for my body you have helped me do for my mind by being the great community I expect you all to be. @Jordan ran a tight ship and turned this place into what the Internet should be. That's pretty good for a fan site started by a teenager. I'll have been here ten years in February. Of those ten years I will always remember that four years ago, in my hardest life trial, I came here and found what I needed. I was motivated by my daughter, but you guys are like the crowd at the edge of the racetrack, cheering and blowing air horns loud enough to hear over the engine.




I would also like to add one thing. I have begun volunteering for the American Heart Association and participating in their fundraising heart walk. The defibrillator that kept me alive came from research they funded. The machines that monitor me also came from AHA funded research. The diet I stick to was developed by AHA researchers. While there is some recent controversy over the saturated fats issue, it still works. They are fighting cardiovascular disease, which killed 788,000 Americans last year, or approximately 30 every 20 minutes. We are doing everything we can to fundraise and look to be nearing the halfway point of our goal of $5,000. We have 1 month left. I love doing this more than my job. I wish it were my job. My daughter has my genes. She will very likely develop heart disease as she ages. I am fighting for her future (screw recycling). I feel invigorated working on this, and many of you have encouraged me and some have donated. I even received donations from people I disagree and debate with in the Opinions forum regularly. That proves to me what this community really is about. Differences of opinion don't stop us from showing support for each other.

Once again: Thank you, Gran Turismo Planet.




PS. Be sure to register as an organ and tissue donor.

 

[TB]

I keep hoping for the day that you post something in this thread along the lines of "tomorrow... new heart!" and yet I still wait. As an outsider, it kills me to hear about what you're going through; I can only imagine how it is on your end.

PS. Be sure to register as an organ and tissue donor.

Have been for 15 years and have no reason whatsoever to change that.

As always, best of luck, my friend. 👍

 

[W3H5]

PS. Be sure to register as an organ and tissue donor.

I don't think anyone would want my organs.

I'm certainly game for donating things I don't need once I kick it, is there a universal way to opt into organ donation? It certainly isn't something that is easy to find info about in Asia so I've always had to let my relatives and friends know that I'm willing to donate, but it would be nice if there was a universal sign to let medics know so I could have it tattooed on my body somewhere.

 

[35mm]

Talk about putting things into perspective. We're such fools to be annoyed and troubled with so little.


Anyway, I want to congratulate you - you're a fighter and an example to everyone.

Also, I wish you all the best.

 

[Omnis]

Let me tell you something, @FoolKiller. There is not a day that goes by that I don't pray for you and your daughter. Every day that I'm dieting, I think of your diet. I think of how you have to deal with sodium, and how all I have to do is cut back on the delicious food. I don't even have to figure out how to make the food delicious. And then other times when I'm feeling down, I think of your situation and your attitude. It's easy to relegate my issues to small, manageable things because they're nothing compared to dealing with heart failure. You inspire me to persevere. I think I speak for everyone when I say that I've always been grateful for you sharing Your Story with us. Hate to go Bill Evans on you, but How My Heart Sings for your Foolish Heart... Who Can you Turn To? Us, of course. But that's been the case Since We Met. Some Day Your heart Will Come.

 

[Cano]

Practically moved to tears by your post, dude. You're admirable.

 

[kikie]

Reading about all of your problems @FoolKiller, I wonder why I worry so much about my petty problems.

 

[Danoff]

@FoolKiller

Your post prompted me to go back and read some of the earlier ones in this thread - and there are some tough moments, with difficult emotional struggles. I've got to say - you have come a long way. If you haven't done it already, I'd suggest that you go back and read some of the earlier posts here, then read your most recent one. The amount of ground you've covered and progress you've made is fairly staggering. You've shown emotional and intellectual resilience and a degree of dedication and focus to your health that I'm confident many would not be able to. I wonder whether I would be able to in your situation.

You're a tough bastard man! No matter what happens tomorrow, today I say well done! You've taken all of limited control you have over your situation and used it well.