FoolKiller Becomes Bionic - NEW UPDATE Nov 19, 2012

[SRV2LOW4ME]

So far no liver issues. The hope is also that when I have my next heart surgery (there is no if) they can correct a lot of stuff and pull me off the drugs. Four months after my last surgery I went into heart failure and the initial reaction was to go back into surgery, but after further consultation with some of the top-of-the-field doctors they came up with my current drug cocktail. So now they are just waiting for the conduit to wear out before they go back in. If there was any liver damage risk I can only assume they would have gone ahead and done surgery by now.

Thats somewhat good to hear I guess (not having to take anything would be the best thing). Theres a guy at work who takes 17 pills a day just to fight all his conditions (the 17th pill being for all the other pills he takes due to the strain on his liver). It scares me when doctors start throwing pills at me as I've learned some can do as much damage to your liver as 40 cases of beer. <-- Don't know if thats true, heard it from the guy at work who's taking all the pills, so no one quote me as the truth.

 

[Jetboy.]

That's simply amazing.. Glad to see you're doing well, however. Whens the little FK due? I'm curious to see how you're going to be doing by that point. 👍


Cheers,
Jetboy

 

[Pako]

It has already been emailed and bragged about. Until now the guy with a couple of screws in his shoulder was always acting as if his issue is just as cool. His response today was, "That's insane."


So far no liver issues. The hope is also that when I have my next heart surgery (there is no if) they can correct a lot of stuff and pull me off the drugs. Four months after my last surgery I went into heart failure and the initial reaction was to go back into surgery, but after further consultation with some of the top-of-the-field doctors they came up with my current drug cocktail. So now they are just waiting for the conduit to wear out before they go back in. If there was any liver damage risk I can only assume they would have gone ahead and done surgery by now.

That sounds pretty intense. Glad to hear you didn't need to go under the knife anymore than necessary though!

Things healing up good, everything as good as expected?

 

[FoolKiller]

Things healing up good, everything as good as expected?

Well, they are finding that it has to pace me more than they like, which is why they are putting me on the beta blocker. My case wasn't in the "you should do this or else" category but in the "just to be safe" area. It seems like I am averaging 6 incidents every two weeks or so.

But since this has happened I have done a road trip and played a round of disc golf. I have a few more weeks of no ball golf (translates into not until Spring with the weather) or similar activities, but I am otherwise a textbook perfect case of recovery.

They even determined that things were settled in well enough that they could lower the sensitivity a notch to save battery power.

The next check up is in six months and between now and then I have the home monitor, which stays hooked up constantly, and will run a check at scheduled intervals while I am asleep (its under my bed) and send in any important readings it picks up automatically.

So now it is returning to normal life, as much as a baby due in four months can be normal.

 

[Jetboy.]

At least the baby has a bit of a buffer zone. If it came right at the height of this... Oi. Glad to see though you have a constant watch with the new monitor, too. 👍


Cheers,
Jetboy

 

[maximumattack]

I've just discovered this thread using the bionic link in your signature, I hope things are going ok for you and you are still recovering well.

Really cool X-Ray picture by the way 👍

 

[FoolKiller]

I've just discovered this thread using the bionic link in your signature, I hope things are going ok for you and you are still recovering well.

Really cool X-Ray picture by the way 👍

All is good. I am allowed to play golf after this month, so I am hoping for one warm weekend in November, but that is looking unlikely. Looks like it will be Tiger Woods on my Wii until spring.

 

[FoolKiller]

I briefly mentioned this in The Infield, but I will share the full story here now that all is said and done.

My defibrillator works, but it can also be tricked.

This morning I was in the shower and while in there did a saline sinus rinse due to some sinus congestion I have been fighting. Because the saline breaks up all the crud in my breathing passages it inevitably leads to heavy fits of coughing. As the coughing subsided I noticed my heart was beating very rapidly. Then suddenly, BAM! I felt like I had been punched. My vision went black for a second, a saw a flash (I saw stars?), and I yelled loud enough for my wife to come running to see what had happened.

Five minutes later I felt fine and was checking the air pressure on my tires. The front right tire was low, so I gave it some air.

Then I headed off to work with the intent of calling my cardiologist as soon as they opened. I felt the jolt in my head. It literally felt as if I had been punched in the jaw, just under the ear. I did Tae Kwon Do in high school and know that feeling. I did not think that it was 100% tied to my defibrillator, but was getting checked in case. I figured we could rule that out and then move on to my next doctor to see what did happen.

I was wrong.

After thinking on it a bit I started freaking out and realized that I did not want to do these tests alone and while waiting to hear back from the doctor I called my mom to see if she would drive me in. She was only 15 minutes away at her job while my wife was 45 minutes away and needed to pick our daughter up from daycare.

My doctor was able to get me in at 1:30 and they immediately read the data from my device. The defibrillator did go off. Future note: It hurts, makes my head explode, and does not knock me out or down. It does not care if I am naked.

But it did not go off because I was in ventricular tachycardia. Those who know what that is just said, "What?" If you haven't followed the reason I have this device is because the lower chambers of my heart occasionally get out of rhythm. When it is severe it will kill you, quickly. It is what Michael Jackson's heart did. So, this device will use a pacemaker to pull me out of any VT, and then only shock me if that doesn't work.

But I did not go into VT. I went into Atrial Fibrillation, and have been since June 18th. This is different than the Atrial Flutter I dealt with before (although I believe I have confused the terms in the past). The device is not designed to stop atrial fibrillation, because that just increases a risk of a blood clot and defibrillation would be a bad thing in that instance as it could knock the clot loose, to lodge in any fun place, like the lungs or brain. It can read it and report it when I have my once every three month checkups, but that is it.

The problem for me occurred because my heart did something right for a change. The Atrial chambers and Ventricular chambers were properly communicating with one another, so when the atrial fibrillation increased this morning the ventricals tried to keep up. My ICD mis-interpreted this as ventricular tachycardia. It attempted to pace my heart, which of course did not work as it was trying it in the wrong place. So, after three attempts with the pacemaker it unleashed the defibrillator. It sent 24 Joules into my heart directly, and gave me the biggest wake-up call of my life.

Needless to say, it was quite shocking. I'm here all week

The atrial fibrillation is still there (yay) and has to be stopped or dealt with. So, this weekend I get a strong round of blood thinners and an increase of my beta blocker (Toprol XL) from 25mg twice a day to 50mg twice a day. They also adjusted teh safety parameters of my device to prevent a reoccurence of this morning. We don't know if I have blood clots to worry about. On Monday morning I go into the hospital where they will first run a Trans-esophogeal echocardiogram (TEE) to detect if I have any blood clots in my heart. If it looks clear then they will give me a full defibrillation with the paddles. Afterward I will continue on blood thinners and my increased Toprol until we determine the atrial fibrillation will not return.



Additional fun details: One of my blood thinners is an injection called Lovenox. I will do that twice a day in my thighs. My brother is a pharmacists and warned me that it might be expensive depending on my insurance. Fortunately it only cost me $50, but my insurance paid $1288.39.


Anyway, I will update here on how things go Monday.

My bionic bits work, a bit too well.



EDIT: Showing the medicine insurance cost. Sorry for the cell phone pic censored with Paint.

 

[Daniel]

Wow, FK. I haven't been following your bionic-ness, and had hardly an idea on the whole defibrillation, but (I hope I'm right): The upper chambers of your heart beat normally, and your lower ones didn't, and when they did, this made you defibrillator cause your heart to beat faster, giving you shock to notify you. If I'm right... ouch.
Even if I'm wrong.. ouch.

 

[homeforsummer]

Makes for really interesting reading FK, it's amazing what the technology can do, and although it gave you a bit of a surprise it's presumably reassuring that it's there working away the whole time so that if you do go into VT it's there to help out.

I know what you mean about the cost of drugs by the way. I work in prescription pricing for the NHS over here. Essentially I'm part of a large team that makes sure the pharmacists get paid for the millions of prescriptions they hand out each year to customers on the NHS, who don't have to pay the hundreds and sometimes thousands of pounds that even small measures of some drugs cost. I've seen 2ml vials of certain drugs priced on the system before at £800 and more. It's crazy, but then that's the drug market.

Lovenox is the proprietary name for a drug called Enoxaparin. It pops up quite a lot, as does an even more common blood-clot inhibitor called Clopidogrel. The latter seems to be one of the most common prescribed drugs after aspirin and ibuprofen, so it shows how many hundreds of thousands of people do have heart problems, either large or small.

 

[Neal]

Glad you're OK FK, you are indeed a tough SOB! 👍

 

[FoolKiller]

Wow, FK. I haven't been following your bionic-ness, and had hardly an idea on the whole defibrillation, but (I hope I'm right): The upper chambers of your heart beat normally, and your lower ones didn't, and when they did, this made you defibrillator cause your heart to beat faster, giving you shock to notify you. If I'm right... ouch.
Even if I'm wrong.. ouch.

Sort of right. For the past year the bottom part has been causing problems. The ICD has been monitoring and keeping it in line via its pacemaker function, along with some help from drugs. But the top part started acting up last week and the bottom part was just playing along because they have to work together as well. When the top part got a little crazy yesterday the bottom part just kept up with it and that "tricked" the ICD into thinking I was having a much worse problem than I was, so it did what it was programmed to do.

Makes for really interesting reading FK, it's amazing what the technology can do, and although it gave you a bit of a surprise it's presumably reassuring that it's there working away the whole time so that if you do go into VT it's there to help out.

In hindsight that is a good thing to know. But when I wasn't sure if that is what had happened and was waiting to talk to the doctor all I could think of was that I should only have gotten shocked if I was close to dying. I spent half of yesterday realizing that I was not ready to leave my daughter alone in this world. She got a big hug when I got home.

I know what you mean about the cost of drugs by the way. I work in prescription pricing for the NHS over here. Essentially I'm part of a large team that makes sure the pharmacists get paid for the millions of prescriptions they hand out each year to customers on the NHS, who don't have to pay the hundreds and sometimes thousands of pounds that even small measures of some drugs cost. I've seen 2ml vials of certain drugs priced on the system before at £800 and more. It's crazy, but then that's the drug market.

I have been on a lot of brand name drugs in my day, but this is by far the most expensive I have seen. Fortunately I have good insurance. I think part of its expense is its nature. From reading up on it, it seems to be made similar to how heparin is, which is a surgical grade anti-coagulant. Both use porcine intestines in their production. This stuff is strong enough that after the injection you are not supposed to rub the area for fear of causing hematoma.

Lovenox is the proprietary name for a drug called Enoxaparin. It pops up quite a lot, as does an even more common blood-clot inhibitor called Clopidogrel. The latter seems to be one of the most common prescribed drugs after aspirin and ibuprofen, so it shows how many hundreds of thousands of people do have heart problems, either large or small.

According to my brother a lot of diabetics use it as well to prevent clotting in their legs.

It is missing one important warning label, the one that says, "Feels like injecting liquid fire." The last thing I expected from a home injection was severe burning. To make it worse, I have to do 100mg per injection (two a day) and about midway through that full amount I am ready to quit. This is the toughest test of my will power I think I have ever faced.

 

[Omnis]

Liquid fire? Sounds about accurate.

 

[FoolKiller]

Liquid fire? Sounds about accurate.

Seriously, someone needs to warn patients about that kind of thing in advance. I give my self allergy shots, which rarely have any irritating effects during injections, and went into this stuff expecting the same thing.

 

[NotThePrez]

Wouldn't know what I'd do if I were you, man. The important thing is that you're still OK. The doctor seriously sped up your heart with a computer? That really is one of the coolest things I've ever heard, even though that may not be very pleasant.

 

[homeforsummer]

[/qAccording to my brother a lot of diabetics use it as well to prevent clotting in their legs.

That'd make sense. I never take too much notice of what drugs are prescribed with which. I have to process about 400 drugs an hour so I'm generally quite rushed!

It is missing one important warning label, the one that says, "Feels like injecting liquid fire." The last thing I expected from a home injection was severe burning. To make it worse, I have to do 100ml per injection (two a day) and about midway through that full amount I am ready to quit. This is the toughest test of my will power I think I have ever faced.

I have massive respect for anyone required to inject themselves with anything. Injections are probably the single thing I have a genuine fear of and it always amazes me to think how many millions of people have to face it regularly. I guess when your life is on the line it gives you rather more reason to put up with doing stuff you'd really rather not in normal circumstances...

 

[Danoff]

Wow, quite the story about being defibrillated while awake. My father in-law actually got defib'd while awake as well when his heart went into atrial fib. He's on meds at this point - not sure what he's taking. He's a physician, so he diagnosed himself immediately - walked into the hospital saying stuff like "My heart went into atrial fibrillation at approximately 2 am this morning..." (I could be wrong about that, maybe arrhythmia is the only thing you can self-diagnose, but I think I remembered him saying he diagnosed atrial for some reason).

Anyway, has to be scary as hell getting shocked in the heart while you're standing in the shower - and to live with the knowledge that the same thing could happen again. I hope they fix the problem. I'm actually impressed that they're even willing to implant a defibrillator - seems kinda dangerous to have that sort of thing automated. Does it yell "clear" before it goes off?

Glad to hear you're hanging in there. I'm sure it's a lot to handle.

 

[TB]

I'm actually impressed that they're even willing to implant a defibrillator - seems kinda dangerous to have that sort of thing automated. Does it yell "clear" before it goes off?

When I was reading FK's experience to my wife (ER nurse for 15 years) she said that there is a guy in town that can tell when it's going to go off and the paramedics have seen him stop his bike, jump off, lay on the ground until it's over and then ride away.

I, too, am glad to hear your doing as well as can be expected, FK. Regarding the shots, that is right up towards the top of my list of things that I hope I never have to do to my son, although with his CF, diabetes is pretty much a given at some point. Thankfully, so far everything he has needed has been either ingested (enzyme) or inhaled (albuterol/acetylcysteine mixture).

 

[Sprite]

Wow dude I'm glad your ok, didn't realise this was going on, so sorry for the late reply. Some serious hardware stuck inside and small frys had a PM too, it seems GT is bad for your health after all.

Wish you to a speedy and full recovery 👍

 

[Small_Fryz]

Bit late to the party, but im glad your ok FK.

Interesting read also 👍. Just when you think your sailing along life nice and quietly these conditions have a good way of reminding you just how crazy things can get!

Stay strong with your injections 👍 i personally havnt had that medicine but ive had strong antibiotics injected into drips in my wrists that caused the veins to collapse and required a new drip inserted after 2 - 3 injections.. Also felt like liquid fire . Not fun but the consequences of not doing it are far worse.

Keep us updated on how things turn out 👍

 

[FoolKiller]

Quick note: I edited my post earlier where I said my injections were 100ml. It is 100mg. 100ml would be a lot more.

I have massive respect for anyone required to inject themselves with anything. Injections are probably the single thing I have a genuine fear of and it always amazes me to think how many millions of people have to face it regularly. I guess when your life is on the line it gives you rather more reason to put up with doing stuff you'd really rather not in normal circumstances...

With allergy shots I have been doing self injections since I was 14 and my mom did them before that, so that part doesn't bother me.

Now, what cracks me up is that I went to the site for the Lovenox manufacturer to see if I was doing something wrong. They have this nice video explaining how to do the injection where they claim it is painless. But visit askapatient.com's Lovenox page and burning is very common. So is nausea and diarrhea. Now that I think about it, I may have more than one side effect. I'll have to talk to my doctor tomorrow.

Wow, quite the story about being defibrillated while awake. My father in-law actually got defib'd while awake as well when his heart went into atrial fib. He's on meds at this point - not sure what he's taking. He's a physician, so he diagnosed himself immediately - walked into the hospital saying stuff like "My heart went into atrial fibrillation at approximately 2 am this morning..." (I could be wrong about that, maybe arrhythmia is the only thing you can self-diagnose, but I think I remembered him saying he diagnosed atrial for some reason).

It is possible he felt it and self-diagnosed. Most people can, but I am one of the few that are asymptomatic with my various arrhythmic issues. I had no clue something new was going on until seconds before I got shocked, and I thought that was just a side effect of a coughing fit.

Anyway, has to be scary as hell getting shocked in the heart while you're standing in the shower - and to live with the knowledge that the same thing could happen again. I hope they fix the problem.

We will see tomorrow if they can fix it. And scary is a term for it. The scarier bit was knowing that it wasn't supposed to do that unless I was in danger of cardiac arrest. Fortunately my heart tricked it into thinking that was what was happening when it wasn't, but Friday morning was a few hours of wondering if I had nearly died.

I'm actually impressed that they're even willing to implant a defibrillator - seems kinda dangerous to have that sort of thing automated. Does it yell "clear" before it goes off?

That would have helped if it had. It shouldn't be dangerous if my heart activity hadn't taken a sudden change a week ago and stepped outside the expected parameters. They have adjusted the safety margins for what should trigger it. And while an automated thing can be dangerous under odd circumstances, it is the only way to constantly monitor someone with a known risk of ventricular tachycardia. Without it I could go into cardiac arrest and die. And since my office refuses to spend the money for an AED I am not waiting to see if an ambulance can get to me quick enough, assuming anyone realizes I am down in time (I'm a manager with a corner, high-walled cubicle).

Glad to hear you're hanging in there. I'm sure it's a lot to handle.

Once I realized I didn't almost die it has become just another case of my heart finding some new and exciting way to keep me on my toes.

When I was reading FK's experience to my wife (ER nurse for 15 years) she said that there is a guy in town that can tell when it's going to go off and the paramedics have seen him stop his bike, jump off, lay on the ground until it's over and then ride away.

Knowing what it is like now, I think I can see that being possible.

I, too, am glad to hear your doing as well as can be expected, FK. Regarding the shots, that is right up towards the top of my list of things that I hope I never have to do to my son, although with his CF, diabetes is pretty much a given at some point. Thankfully, so far everything he has needed has been either ingested (enzyme) or inhaled (albuterol/acetylcysteine mixture).

Good luck with that stuff. The one blessing I have in all of this is that despite my obviously messed up body my daughter has no detectable health problems. As bad as my health is, and having known paralysis, seizures, and even GI issues, I truly believe that you are dealing with a harder situation than I am.

In fact, my situation cannot compare to any of the troubles anyone may have to deal with in regard to children. I would take on all the ailments in the world to never know seeing my child become sick or know the pain of losing and/or not having child.

 

[Dan_]

Wow, quite a situation, but I'm glad you're fine by now.

Most of my mom's family members are cardiac( don't know if this is the appropriate word in english), I should do some checking too. This is serious business.

 

[FoolKiller]

In at 9:30, on the table at 12:50, in the car by 2:30, and home by 5:30 (had to pick up the baby and get some food). My heart is back to normal, or as normal as it gets..

My throat is killing me due to the scope they ran down my throat, but otherwise I feel fine.

To make things short my doctor chose to take an interesting direction. He was theorizing that when I got shocked on Friday that I felt so good because it temporarily fixed the problem. Between that theory and the fact that I have a history of developing sores from the defibrillator pads he decide to kick up the strength on my internal defibrillator and use it. So, he had the technician tell it to give me a 35 Joules shock. It worked. I was unconscious this time, so I have no clue what the increase in power felt like, thankfully.

Due to the general anesthetic I am considered legally under the influence for 24 hours and cannot drive. This also means that my wife won't leave me alone with our daughter, which is fine because I would feel awful if something happened.

On the upside, I am now off the Lovenox. My blood was so thin that my PT/INR levels were 2.8 (2-3 is desired). When they placed my IV they had a hard time stopping the blood. So, now I am just on coumadin.

The hardest part of this entire thing was dropping my daughter off at daycare this morning. As we walked out I began to cry. My wife asked why and I explained that I dropped my daughter off so I can go stop a life threatening condition. With my health it is possible that I will do something very similar one day and daddy won't come home. That was hard thought to face, and one I hope never comes true.


But for now my life will return to normal on Wednesday.

 

[Danoff]

I've heard having a child described as having your heart taken out of your chest and put in a Fabergé egg and watching the world play catch with it. It's hard enough to deal with the emotional consequences of anyone else hurting your child... but to be put in a situation where you yourself might, through no fault of your own, inflict severe pain on your own child - that's one tougher.

Add to that the knowledge that your daughter might not ever get to know you, or that you might not get to see her grow up and be there for her... that's a tough one to handle emotionally.

Take solace in the fact that no matter when you go (hopefully a loooooooooong time from now), there's something of you left in her... ok that's all I can manage. Glad you're ok.

 

[Small_Fryz]

Glad your ok as well!

Im so lucky that my condition seems to be very stable these days (last open heart was over 7yrs ago) any my checkups are going strong. I really feel for you mate and Im sure you will get through it and be all sorted.

👍

 

[lordalucard]

I wasn't expecting that... makes me uneasy

 

[Duke]

FK, I didn't get a chance to read through the latest chapter in the saga, but I'm glad to hear the situation, while always of concern, is not as dire as it might be. Hopefully your doctors will be able to get you improved and stabilized.

I know about the burning injections, and they really suck. Good to hear you're off the worst of them.

 

[FoolKiller]

OK, this crap just doesn't end.

I have been dealing with sinus congestion and a cough all summer long. I have pretty bad allergies and this year we have had great weather for plants, so I am attributing it to that. But I did go to my general physician to see if she could find anything else before I called my allergist (I see him next Friday). While there she noticed my blood pressure was up and had me call my cardiologist to have them check me out, just in case.

So, I saw them yesterday for that. While going in I was going to point out some digestive issues and muscle aches that might be side effects of the beta blocker they put me on. They did a full exam, which includes checking my abdomen to feel my liver. The doctor noticed that the liver felt enlarged. That can be bad for someone in controlled heart failure. So, he had them run an echocardiogram while I was in there too. That's like an ultrasound for the heart. It showed increased pressure around my pulmonary conduit that they had put in when I was 14 (17 years ago). Now, this the primary thing they have been monitoring since my last surgery because these things are supposed to last 7-10 years. I have gone 17 years with mine.

Here is a diagram of a pulmonary conduit. I also have the patched septal defect, although that hasn't been an issue since I was six.

What happens over time is that conduit hardens and narrows, making it not flex properly when the heart beats and creating increased pressure. The further issue for me is that the valve you see just below it (the tricuspid valve) leaks, so that pressure backs up into the vein coming into the heart, which is adding pressure in the liver, thus creating the enlarged liver and why the abdominal exam is perfect for finding symptoms of right-side congestive heart failure.

So, the increased pressure levels are a sign that the conduit could be narrowing further and finally hitting a point that is dangerous for me.

But all these external tests are purely indicators that there might be a problem. There is only one sure way to tell, and that is internal testing. That means a heart catheterization. That will happen sometime next month and then they will determine that if I need another surgery.

And now I am paranoid that these symptoms that I was attributing to the crappy weather, allergies, and possibly side effects from some newer medicines might actually have all been signs that I my congestive heart failure was worsening. See, I have been through this many times before where a slight change in a regular exam makes my doctors worry and they do a catheterization. Afterward they say I am fine and free to go on living my life as I have been. But in all those instances I felt fine. This time I don't feel fine, I feel off.

So, next week they will call me to schedule the procedure for 4-6 weeks out since I don't appear to be in an emergency situation. But I am scared to death that I will have to have surgery before my daughter's first birthday.


And for those who are unaware, I don't have a happy history with my surgeries. I won't go into details, but my last one didn't go smoothly, so my fears aren't due to some insane paranoia.

 

[Terronium-12]

Best I could honestly suggest is to keep a leveled head, if not for yourself then do it for your little one. Here I was thinking I had it bad with my situation and it doesn't even begin to compare with yours. I really hope all goes well.

 

[Danoff]

I assume you shared your concerns about what you'd assumed were allergies/side effects with your doctor. They might be able to bump the procedure for you if you can establish that you're a bit more of a rush case.

What's the significance of having surgery before your daughter's first birthday?