FoolKiller Becomes Bionic - NEW UPDATE Nov 19, 2012

[MarcoM]

Must be no fun having all these uncertainties and trying to live a normal live.

My guess it is just necessary to have the surgery before the 1st birthday?

 

[Neal]

I can understand your fear of needing surgery because you feel rough in general but it doesn't necessarily mean there is a bigger problem. They would have had you in for tests straight away if they were very worried but having it hanging over you is bound to be difficult. Keep your chin up and keep us posted, don't worry about it on your own.

 

[UnoMOTO]

OK, this crap just doesn't end.

I hope and pray that somehow you can get to a stabilized point with your condition. Its hard enough being a parent without this pain. I wish you the best of luck.

 

[FoolKiller]

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.

Yeah, I shared those worries, but they want to rule out any of the symptoms being heart related before they start switching me around on the drugs that are supposed to be keeping the situation in control. If the symptoms are because the heart is acting up, and not a side effect, changing the drugs could make things worse.

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

Fear combined with wanting to reach an emotional milestone.

After my last surgery resulted in a stroke, eight seizures, and left-side paralysis that put me in physical rehab for a summer I don't handle the idea of surgery well. When I was about 16 I came to terms with my mortality, that my heart will likely one day kill me, and had only feared being paralyzed again. I had a taste of being alive without living and I would prefer death.

But now I have a daughter and a family. Emotionally, I feel I need to be there. The only outcome I find acceptable now is coming out healthy enough to live a full and normal life. I used to not fear dying, but now my greatest fear is having my daughter grow up without a father.

Having surgery before my daughter's first birthday is significant to me because if anything goes wrong it would be the ultimate twist of fate. Every future milestone I envision seeing, every hope I have for her, every thing I want to teach her snatched away, not from me, but from her. That first birthday is just that first big milestone I have in my mind.

I know it is an unreasonable fear because I risk a similar outcome every time I get into my car, but we are shaped by our past and I have walked away from two rollover accidents, but I literally had to relearn to walk after my last surgery.

 

[Neal]

FK: I didn't realise you'd suffered so badly after the last surgery, I understand more now why you're worried about it. My Dad had a stroke about 15 years ago so I know enough to be extremely scared of ever having one myself.

I'm really sorry this is happening to you, I've got my fingers crossed.

 

[niky]

Gut-wrenching update, FK. Really hit me there, as I am also a father and I have more health issues than I have bank accounts (Okay, I only have two bank accounts).

I've had to live with the fear of death for much of my life. I have a family history of diabetes and hypertension, and I had terrible arrhythmia when I was a kid. I'd lay awake at night wondering if I'd live to see another day. I got over it later... and even after I developed full-blown diabetes and started having liver problems... I was comfortable (especially since the heart issues mysteriously stopped).

But when I had my daughter, the fear returned. I'm a walking genetic grenade and I know it. And when I have sleep apnea, it comes with the night terrors of seeing my wife and child suffocate to death with me.

But it's something you learn to live with. Being a father is difficult enough without worrying about whether you'll be one much longer or not. I got to the point where I told myself: just stop thinking about it. Take it one day at a time. I can't claim to know how bad what you're going through is, but you're strong to have made it this far, and I do believe that you can make it much further.

Much respect, man. Good luck with that operation. 👍

 

[FoolKiller]

But it's something you learn to live with. Being a father is difficult enough without worrying about whether you'll be one much longer or not. I got to the point where I told myself: just stop thinking about it. Take it one day at a time. I can't claim to know how bad what you're going through is, but you're strong to have made it this far, and I do believe that you can make it much further.

The one thing I have decided is that once I get through all of this (positive thinking) I am working hard to do everything in my power to be healthy. I can't diet and exercise away birth defects, but I can reduce risks of lifestyle based problems and reduce the stress placed on my already problematic health.

You mentioned having sleep apnea, I hope you are getting that treated. I have it and after I visit with my allergist this week to attempt to figure out what is going on with my allergies this summer (I am guessing multiple heat and air quality alert days have been playing a role) I am getting another sleep test done because it has been seven years since I got my first C-Pap machine and it hasn't been adjusted since. I figure being able to breathe and sleep properly will alleviate some of the physical stress on my body.

Much respect, man. Good luck with that operation. 👍

Just to clarify that there is no operation yet, just an out patient procedure to see if one will be necessary. But considering things I did regularly a year ago leave me feeling like I am going to pass out now, despite actually weighing a few pounds less, I am guessing I will need a surgery.


One thing about all this is that I do have a good support structure around me in my family. My wife is great. She has taken on a lot of the outside work without saying anything about how I shouldn't do it. She just does it herself. I have tried switching with jobs that I can do around the house, like doing dishes and whatnot. The biggest thing she does is watch me when I am holding the baby because that is starting to cause me to get tired. I see her take a look at me and then just look at the baby and say, "Want to come to Mama?" She takes away the strain without forcing me to confront the idea that I'm starting to have trouble just carrying my daughter. She is also very good about making sure to hand her to me whenever I am seated and won't be strained by holding her on my lap, so that I'm not losing any time spent with my daughter.

 

[Danoff]

Fear combined with wanting to reach an emotional milestone.

After my last surgery resulted in a stroke, eight seizures, and left-side paralysis that put me in physical rehab for a summer I don't handle the idea of surgery well. When I was about 16 I came to terms with my mortality, that my heart will likely one day kill me, and had only feared being paralyzed again. I had a taste of being alive without living and I would prefer death.

But now I have a daughter and a family. Emotionally, I feel I need to be there. The only outcome I find acceptable now is coming out healthy enough to live a full and normal life. I used to not fear dying, but now my greatest fear is having my daughter grow up without a father.

Having surgery before my daughter's first birthday is significant to me because if anything goes wrong it would be the ultimate twist of fate. Every future milestone I envision seeing, every hope I have for her, every thing I want to teach her snatched away, not from me, but from her. That first birthday is just that first big milestone I have in my mind.

I know it is an unreasonable fear because I risk a similar outcome every time I get into my car, but we are shaped by our past and I have walked away from two rollover accidents, but I literally had to relearn to walk after my last surgery.

I understand all of that. You want to be there to teach her things, you want her to remember her father. All completely understandable and good. But here's the kicker, what are the chances she's going to make it to 6 years old (when she might start having a decent memory) without you needing surgery? From what I've been following here, it seems like it's inevitable.

All of us here want to see you get a chance to be a great dad, and I fully expect you to be able to - especially now that you have your daughter driving you to work even that much harder at staying healthy. But if you don't, if you're in a rough state, or even not around by the time she's old enough to remember you - I'm absolutely sure that your wife will help fill in the blanks for her. I know this seems a bit morbid, but have you considered recording a video for her before you go into your next (unscheduled) surgery? Given your concerns, it might take just a tiny bit of the edge off.

The bottom line is that I know you're going to do everything you can to stay healthy and be a great father. That's all you can do. Everything else is out of your hands.

As always, best of luck to you.

 

[FoolKiller]

I understand all of that. You want to be there to teach her things, you want her to remember her father. All completely understandable and good. But here's the kicker, what are the chances she's going to make it to 6 years old (when she might start having a decent memory) without you needing surgery? From what I've been following here, it seems like it's inevitable.

Like I said, its an emotional milestone and as such it is not based in logical reasoning. Every time I see her look at me and smile or act a certain way around me that she doesn't do around anyone else I wonder if the things I am doing now will have any influence.

And honestly your point is not one that I have considered. Even if this is something a minor adjustment in medications can clear up the chances of needing surgery before she will have a solid memory of me are high. A surgery now can actually be a good thing in the long run because I will be in as good of health as I can be when she is starting school, learning to ride a bike, etc.


I also have no clue why I haven't thought of your video idea. We bought a video camera just before she was born. In 90% of the videos we have filmed I am behind the camera. Maybe I need to hand my wife the camera more often and once we determine I am to have surgery maybe a series of videos from me to her wouldn't be out of the question.

 

[niky]

That sounds like a great idea.

I figure being able to breathe and sleep properly will alleviate some of the physical stress on my body.

Sleep helps, for sure. I haven't had the sleep test done, as apparently my anti-cholesterol medication and a proper diet alleviates it (sooner or later, I will have to face up to it), but I find that it's awfully unsettling feeling like you aren't going to wake up in the morning. Not that it's that dangerous... but it feels that way.

 

[Duke]

Well, I'm disheartened to hear the latest news, FK, but I've never seen somebody with a better attitude and determination. The best of luck and medical science to you.

 

[Touring Mars]

Best of luck to you, FK - it just so happens that I started a blog yesterday (inspired in part by Diego/Tom Servo's signature, no less!) to create a kind of online archive for when my nephew is older... I reckon that while it is a bit of fun and something for him to explore later in life, I thought it might also be useful if anything were to happen to me before he is old enough to remember me. There is so much I want him to know - or atleast that I would like to share with him - that I reckoned it was time to start putting something 'in writing' so to speak (over and above my GTPlanet posts and Facebook activity, that is!)

It was partially inspired by the fact that my cousin in currently going through a very tough time, as he is suffering from cancer again, and he has two young daughters to think about. I reckon the idea of creating some kind of archive - some specially made videos, specially written letters or even a blog like I'm starting - are great ideas, since it is something that you can always share later anyway, whatever might happen in the near future.

 

[FoolKiller]

Well, no more waiting for me. We had scheduled the catheterization for the end of September, but the weekend after my appointment my feet and legs began to swell, right where I had been having muscle aches. I called them and they increased the dosage on my diuretic and asked me to call back in a week. I did that and there was no change. The only time my feet look normal is in the morning.

So, after calling them they wanted me to come back in. In the two weeks since I was last there I have gained over six pounds in weight, likely attributed to the retained water. They did another echocardigram and found some signs of fluid building up around the heart.

My doctor's diagnosis: "I want to admit you today and do a heart cath tomorrow."
Since I needed to make arrangements for my daughter he said that I could just go home today and come in tomorrow though.

So, the plan is to do a heart cath tomorrow and start me on a new diuretic over the weekend. They will determine if I need surgery, but he is sure I do, and if my swelling goes down over the weekend we will go from there. If the swelling remains then I am going to be admitted to the hospital on Monday to be put on IV diuretics until they get my fluid retention under control.

So, I was freaking out a bit before, but now I am in a combination of scared to death and happy to get answers now.

But hey, GT5 looks awesome. If I get some scheduling flexibility on a surgery I am going to attempt to make this work in my favor so that I will be spending my home recovery days during launch week.


SIDE NOTE: My daughter turned 6 months today. Happy half birthday!

 

[Danoff]

So, I was freaking out a bit before, but now I am in a combination of scared to death and happy to get answers now.

I can appreciate how you'd end up in that state. At least now you know what the challenge is in front of you and can prepare yourself for it. I hope it goes well for you.

 

[Touring Mars]

Good luck, and I sincerely hope for a positive outcome for you.

 

[Duke]

Yes, please keep us posted to the best of your ability. We are all thinking of you and wishing the best for you and the other Foolkillers.

 

[FoolKiller]

The bonus is that if I do avoid hospitalization due to the water retention having the heart cath tomorrow means I will only miss one day of work, leaving me six paid time off days left to use this year. The original scheduling had me missing three days of work. That would mean that in the event of surgery most of my recovery time would be paid for.

But I grabbed the FMLA forms from my HR rep just in case. My preferred goal is to find a way to stabilize things with medicine until next year when I will have four weeks of vacation time available to use. Paid time off wouldn't be an issue now, except I burned through two weeks (of three total available this year) when my daughter was born. Just a matter of bad timing.

 

[Mrs. Famine]

Good luck FK. And don't forget that IV diuretics make you need to pee. A lot. And a whole lot more

 

[Small_Fryz]

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.

Wow good to know, I had mine put in at 14 and Now im only 21 so I still have some solid years to look forward to before my inevitable surgery also.

Well, no more waiting for me. We had scheduled the catheterization for the end of September, but the weekend after my appointment my feet and legs began to swell, right where I had been having muscle aches. I called them and they increased the dosage on my diuretic and asked me to call back in a week. I did that and there was no change. The only time my feet look normal is in the morning.

So, after calling them they wanted me to come back in. In the two weeks since I was last there I have gained over six pounds in weight, likely attributed to the retained water. They did another echocardigram and found some signs of fluid building up around the heart.

My doctor's diagnosis: "I want to admit you today and do a heart cath tomorrow."
Since I needed to make arrangements for my daughter he said that I could just go home today and come in tomorrow though.

So, the plan is to do a heart cath tomorrow and start me on a new diuretic over the weekend. They will determine if I need surgery, but he is sure I do, and if my swelling goes down over the weekend we will go from there. If the swelling remains then I am going to be admitted to the hospital on Monday to be put on IV diuretics until they get my fluid retention under control.

So, I was freaking out a bit before, but now I am in a combination of scared to death and happy to get answers now.

But hey, GT5 looks awesome. If I get some scheduling flexibility on a surgery I am going to attempt to make this work in my favor so that I will be spending my home recovery days during launch week.


SIDE NOTE: My daughter turned 6 months today. Happy half birthday!

I wish you all the best!! Ive had 4 open heart bypasses and I was forunate enough to only have 1 of them have a few complications (couple bouts of chest infections that lasted over about 6 - 7 weeks) however all 4 times I have made a full recovery. My last operation was 7yrs ago as mentioned above and from what ive gathered its been 17 years for you? Medical procedures and technology has changed so much since then and even in the 7yrs since my last one. Some of the things babies are able to survive with these days... I have full confidence that you will get through this fine and come out better, stronger and far healthier and ready to see out your daughters childhood with plenty of happy memories.

As danoff suggested maybe a good idea to do that video just in case but as Im sure your aware, keep up that positive thinking and picture and aim on whats going to happen and what your going to be able to do afterwards once its fixed up again.

Keep us updated 👍

 

[niky]

Good luck.

 

[Neal]

Good luck FK, I know you're bricking it but as Fry has said medicine is much more advanced than when you had your last op so I'm sure it'll be fine. I've still got my fingers crossed for you though

Happy half birthday to your daughter, it's a great age for them (active but not very mobile!).

 

[MarcoM]

Good luck with the cath today.

 

[Jay]

Good luck, wish you well 👍

 

[TheCracker]

Fingers crossed for you FK, wish you luck 👍

 

[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.

 

[Neal]

I am so sorry FK. I wasn't really expecting anything like that. I wish there was something I could do or say to help.

Keep us posted mate.

Neal

 

[lbsf1]

holy crap. I hope that you are ok whatever happens. I don't really know what else to say really thats really shocking. Hope this all ends soon and that you are ok in the end.

 

[nk4e]

Good Luck FK! Keep us posted.

 

[ROAD_DOGG33J]

Sorry to hear the bad news. It sounds terrifying.

 

[NotThePrez]

That sounds horrible. I hope everything works out in your favor.