Any Firefighters out there?

[Cerendipy]

My husband is a Captain with 15 years of service at his FD and was recently diagnosed with a BAV and AAA of 4.5 cm (found via routine health exam paid for by his department per NFPA 1582). No surgeon will operate on him yet because the pressure across his valve is not high enough and his aneurysm is too small (but big enough to prevent him from returning to his fire truck without surgery). No one in his department has ever had this situation...and everyone we have talked to from other departments with a similar diagnosis discovered the aneurysm and/or valve abnormality when it was operable and then returned to work post-op, no restrictions. My Captain is stuck in this "waiting room." He is very VERY depressed and fears his career is over since he has no idea how long it will take for him to be operable (could be tomorrow, could be 10 years from now). I guess I am just trying to find some hope for him by trying to find a story or two from someone similarly situated to my Captain. He LOVES his job...and right or wrong, being a professional firefighter is wrapped up, part and parcel with his very identity. I have searched the forum and realize there are firefighters who have been members of this community, but most of the posts seem to be old posts or the poster's condition was operable when it was discovered.

Anyone? Bueller?

Thanks for reading my post. I do appreciate it.

 

[pellicle]

Hey Serendipity

I'm not a fire fighter ... and your searches are well done (I think I have spoken with a few of them).

I'm only here to say this for your Captain.

The waiting room is one we all are in, know it or not. The end of your career could happen due to any small accident in the very next call out .. or not till you're past the physical age where it becomes impossible.

My point is this: we never know when, and wisdom is in seeing that truth.

Live each day and love it, deal with the eventualities as they occur ... as a fire fighter he should know that. The roof could cave in ... or it won't

Just do it ... till you can't ... then work out what next from there

http://cjeastwd.blogspot.com/2015/09...-delusion.html

I wanted more time ... but I didn't get it.

Shalom

 

[dick0236]

Welcome Cerendipy. Good that you did a search on this site. Yes, over time there have been several firefighters, police officers etc. who have had this surgery and gone on to normal lives in their professions. Like most posters here, they come on, get the info that helps them, have the surgery.......and then return to a normal life. Some stay around but most go on with their lives......knowing that this site is always around if they have a concern or question. Right now, the best thing he can do for himself is educate himself......."cause this is not life changing surgery anymore.

Maybe one of post-op firefighters will see your post and respond.

 

[Protimenow]

Welcome, Cerendipity - like the others, I'm not a firefighter, either. This is certainly a strange dilemma -- if he hasn't already, perhaps your husband can challenge the rules that keep him from the truck -- if the doctors don't think the aneurism is bad enough to operate, then the risk involved in fighting fires with the aneurism may be overblown. Perhaps they'll adjust their standard to allow him to continue to work - with regular (twice annual?) checkups to evaluate the aneurism.
Perhaps he'd be okay with a desk job (probably not) or advisory job that keeps him off the truck until his aneurism is bad enough that he's a candidate for surgery.Perhaps another surgeon will disagree with the ones who said that he's not ready for surgery and decide that with the risk factors being LOWER in people who have small aneurisms than in people with larger aneurisms, they may make the repairs and get him back onto the truck.
Perhaps they'll do this in two stages -- maybe they can do a non-invasive procedure to strengthen the weak area in his aorta, and LATER crack his chest for valve replacement.

Heart surgery is not something that many of us look forward to -- unless we're already weakened by the inadequate functioning of the heart and want to improve our lives. In my case, I was told that I had a murmur/bad valve when I was in my early 20s. When I was 41, I asked my cardiologist how sick I had to be to qualify for surgery. My heart was already enlarged, I didn't have a lot of endurance, but I probably could have waited another five years or so until my heart was even more enlarged and weakened by having to work hard to keep me alive. Perhaps your husband can seek out another, somewhat less conservative, but very competent surgeon, explain the issues, and maybe get both things fixed.

The fact that your husband probably has good insurance, and fixing both problems may be worth the risk of surgery, this may make absolute sense to another surgeon. Don't take just one doctor's advice - others may disagree and decide that surgery IS a viable option NOW, before he starts seeing symptoms. Surgery IS scary - especially to the loved ones -- but the survival rates are good, surgeons are now (mostly) trained for these procedures, and your husband may be able to return to the job he loves, with more energy than he's had for the past few years.

 

[cldlhd]

I'm not a firefighter but I have a job that has physical requirements. When I was diagnosed in 2014 with BAV and an aneurysm of 4.7cm technically my aneurysm was too small to operate but my surgeon pushed for it and my insurance paid. My valve was in good shape so it was repaired not replaced. My surgeon said he gets lots of State police who don't have light duty so they get their aneurysms fixed earlier than usual. It might sound weird but once I found out I had an aneurysm I was sort of glad it was big enough to justify surgery.I'm not trying to talk him into premature surgery and it might not even be an option for him but figured I'd put it out there.

 

[alpha 1]

Wow Pellicle I loved the link. It is so true.

 

[pellicle]

Wow Pellicle I loved the link. It is so true.

Thanks alpha, I write all kinds of whacked out ideas on my blog ...

Cerendipy I guess I was also trying to say that you don't know how long you'll be in the waiting room. The rest was alternative views to attempt at providing some sort of consolment. Life is really about change. Sometimes the changes are what we want, sometimes not.

Best Wishes

 

[COfireftr]

Hi Cerendipy,

Oh how I can relate to much of his situation and what you are dealing with as a family. So glad I popped back in here. I had to walk away for a while and take a little break from all things heart related. Messes with your head a bit. I'm now back in "research mode" as my time in the "waiting room" may be getting closer to coming to an end.

I'm 40 years old and am a Truck Captain with 17 years on the job. I've been in the "waiting room" for 10ish years. Lucky for me I don't have an aneurysm. I just have a BAV with regurgitation. Mine too was discovered during a routine annual job physical. I've been able to stay on line and on the truck the entire time...except for the one time an ignorant occupational doc took me off line because I didn't carry a letter from my cardio with proof of recent stress test in my back pocket. The annual physical is always an anxiety inducing adventure. The occupational doctors we've contracted with are awful and unable to think outside the box, or in my case, just trust my specialist.

NFPA 1582 is so great in many ways and so frustrating in others. The illness and injury prevention component is so important and has probably prevented many deaths. But...there is so much grey area and cover your ass ambiguity. This is what makes it so tough. It's in our nature as firefighters to understand the rules, play by the rules, fix the situation, and move on. That's why living in the waiting room sucks, especially when we fear someone will take away our livelihood and part of our identity. I can't get a solid answer from my department or occupational doctor what exactly would happen after valve replacement surgery. I'm ready to fix the problem and move on. I'm really not afraid of the surgery, but just want to know what will happen with my job.

People who aren't in the fire service or married to someone in the fire service will never understand, nor would I expect them to. I am lucky enough to wake up in the morning and look forward to going to work to do something I love. The sense of purpose would be devastating to lose, not to mention the years of training, sleepless nights, education, and discipline to learn the job and promote up. Most people aren't that lucky. My situation has now progressed some. I have a surgeon now telling me he would like to operate and my cardiologist saying we have "a little time". We are looking at later this fall most likely. The surgeon told me it would be "criminal" for him to put anything but a mechanical valve in me. If I go on lifelong coumadin therapy it would likely equal the end of my line firefighting career...because of NFPA 1582. Even though I know its totally manageable and I won't have any restrictions in my personal life. I would still be able to mountain bike, trail run, skateboard, and everything else I already do. Like surgery itself, i'm not afraid of Coumadin, but am afraid it will jeopardize my job. For this reason I have decided I will probably choose a tissue valve against most peoples advise, because I want to stay on the job. Hopefully by the time re-op is necessary there will be other opportunities. I believe I could be in a Battalion Chief or admin role and on low dose Coumadin. I'm just not ready for a desk yet!

I really feel for your husband being forced offline and not having any idea for how long. That is downright cruel for a firefighter. Light duty is like prison! In his case he doesn't even know when he's eligible for parole. Most people would be praying to put surgery off as long as possible, but I'm sure he would go in and fix it tomorrow if they would let him. Like I said, if there is a problem we want to fix it, not sit around and wait for the inevitable. I would suggest meeting with other surgeons. Explain the situation and see if someone would be willing to take his case on. Or, maybe the surgeon/cardiologist would help go to bat for him to get him back on line for the time being. That would depend on how strict his department is with NFPA compliance. It took me a couple of years to figure out who a good cardiologist match was for me. I had to fire a couple along the way. I plan to meet with a couple more surgeons in the near future. My first cardiologist 10 years ago told me not to run more than a 5k race. My current cardiologist cleared me to run a marathon a few years back.

Please feel free to hit me up with questions. You can also message me and I'd be happy to provide a phone number. These feelings and emotions are normal and all very relatable. Take care!

Eric
[email protected]

 

[Cerendipy]

Thank you, everyone, for your comments. We have been to several cardios and several surgeons, and the only consistent response among all of them is that surgical guidelines prohibit surgery for my Capt. until either his valve worsens or his aneurysm grows. Honestly, that is why I resorted to posting (very unlike me - I would rather silently stalk). Plus, we have the added complication of the fact that our claim is still currently being evaluated for workers' comp., so we really have run out of the ability to continue to seek alternative medical opinions (most of the opinions we got were before the claim was filed and processed).

And while I certainly appreciate the kind encouragement, and perhaps I, personally, would be able to "see the bright side" as they say or be hopeful/grateful it was caught/happy to still be alive if I was the one afflicted, I don't know a single firefighter under the age of 40 able to have this outlook facing what my Capt is facing. It takes a special breed of person to do what they do, and you have to take the good (their ability run into a burning building when everyone is running out) with the bad (they'd gladly give up a limb or lose years off their life to keep fighting fire). I can't explain it (I'm not a firefighter) but I do recognize and understand it (I am a firefighter wife). You just can't ask a firefighter to swallow his misfortune and and expect them to repackage it as a blessing when it means sidelining him from his truck and his men. Right or wrong, you just can't. And I realize I should be grateful that he is still here to complain and be miserable, frankly, I am angry that this happening to my best friend and soul mate. Its just awful to watch him get up everyday and dread every moment he is awake. I feel like I am watching the life be sucked from his body right before my very eyes.

I also do not mean to seem ungrateful for the fact that his job offers light duty and good health insurance - I am most certainly very aware that these are tremendous benefits of being a firefighter due to the fact that I am not a firefighter and would not receive these benefits if I was in his shoes. I am beyond grateful that my Capt has a union to help him, too. However, just because I am grateful for the good things does not outweigh how awful this whole situation is for my Capt. And for that matter, if he was a desk jockey like me, he could keep working without any restriction if he were diagnosed. I also realize everyone who posted and is not a firefighter/firefighter family member certainly did not have to read my post and offer their assistance or kind words, so I cannot thank you enough for doing so. Especially to do so for a stranger to your boards. Having a place like this to go and ask questions from others who have been there before or are currently going through similar life events is invaluable.

 

[Cerendipy]

Eric/COfireftr - THANK YOU. You have NO IDEA how much your post means to me, even though your situation was different, its just a relief that someone out there somewhere understands what is happening to our family. We have small kids and our home-life has been blown apart by his diagnosis and indefinite light duty. Its hard to go from a 24/48 guy who loves his job and is just awesome to be around when he's home to a depressed, angry and detached shadow of a man working days on light duty with no purpose. To say he is miserable all day and all night is an understatement. What he wouldn't give for his crappy station mattress every three days over sleeping in our comfortable bed at home every night. He had to move a ladder truck today and he was the happiest he's been in two months because he was able to ride in a firetruck. I feel so awful for him and I am completely helpless and useless. I can't cheer him up, I can't distract him from his condition and current state, and I have no answers for him as we are still waiting on workers' comp to make a decision. Everything sucks. You are right that he would absolutely have his chest cracked TOMORROW if they would let him, and has already decided he is going to chose a tissue valve when its time, because he can't stand being off the truck and away from his men. Can't. Stand. It. He is the love of my life - we have been together for over 20 years (married for over 12), and my heart breaks for him knowing how awful he feels about all this. Not to mention the fact that all of our kids have to be screened, since his BAV might be congenital. Its just too much for him to take.

I am sure we are in for a fight with the FD or workers comp...or both...and that is probably the only way I can be truly helpful, as I am more than ready to fight for him. I just wish I had more answers for him now and I know that is wishful thinking - literally, the definition of wishful thinking - but this whole waiting thing is awful. Oddly, his surgeon is willing to return him to full duty with monitoring (too soon for surgery, too soon for rupture/dissection), but the FD cardio says no. Whats crazier is of the 5 cardios we have seen, we have not had one consistent restriction among them - he can snowboard, he can't snowboard, he can scuba, he can't scuba, he can run, he can't run, he can lift and bench, he can't lift and bench...and the weight restriction from lifting? We have had 5 different levels from nothing over 20 lbs to nothing over 100 lbs! Clearly, a huge swing and extremely inconsistent advice! Not to mention, the surgeon cleared him for full duty! It all sounds even crazier now that I am typing it.

Thanks so much for offering contact in the real world...I just might take you up on it in the hopes I can actually get my Capt to talk about all this, too. You firefighters and your aversion to feelings.

From the bottom of my heart - thank you.

Laura

 

[cldlhd]

So is the workmen's comp about the valve or the aneurysm? If so I would be very surprised if they considered either work related. Light duty might not be optimal but it's good that he has it. I work for a local municipality and I was on unofficial light duty for the 11 months I was in the waiting room but our job has physical requirements and if I was in that spot where my aneurysm was big enough for restrictions but not big enough for surgery they could have told me to hit the road. After my surgery my surgeon cleared me and gave me the "no restrictions" but my employer made him check off on 14 specific physical requirements. If he gets on warfarin and has the option of taking a desk job it might not be what he wants but he would still be in the 'business' and if the pay, benefits, pension etc... are good then it might be the way to go. Most importantly he would still be alive.


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[COfireftr]

You are so very welcome, Laura! I know things seem very grim right now and there is a ton of pessimism but he will have moments of clarity and things will become manageable. I do feel for him and your family. That unknown duration of light duty is brutal. Makes a person used to being a fixer and problem solver feel helpless. It will feel like a rollercoaster. For me its every time I go to a work physical or to my 6 month cardio appointments that the mind starts to get the best of you. The fact that he does have an obviously supportive wife and family unit is HUGE! I also have 2 kids (12,14) and an amazing wife. My wife supports me and lets me have my moments, but the best thing she does is put me in check when I need it. She doesn't allow the pity party to go on too long. She reminds me in a caring, yet stern badass way that we will get through it and that there is an entire family that needs me to keep my **** together.

Those inconsistencies you talk about have been the biggest source of my frustration. I guess that's why they call it the "practice" of medicine. It is still pretty subjective. We firefighters are used to standard operating procedures and strict directives. The hem hawing cover your ass vagueness drives us crazy!

You are so right about us firefighters and our feelings. We aren't very good at that whole thing. It's just not in our DNA. If we let our feelings come out on every 911 call we run we'd be wrecked after a couple of months on the job with the messed up stuff we have to see and deal with. But as a result, this is why the IAFF is opening an entire treatment center based around PTSD and substance abuse for firefighters...because we suck at dealing with these things. With that being said, the best thing I have done is to reach out to others even though it was uncomfortable to do. Talking to others in the field, but also just similar to me in age and interests have helped me feel more in control. I just reached out to another firefighter last week that went through valve replacement, but then unexpectedly had to have an implanted defibrillator put in because his electrical system went haywire after his heart returned to normal size. This was a huge blow for him. When he woke up he thought for sure it was the end of his career. He is back on line now, albeit monitored closely and with some driving restrictions. He is younger than me and told me how he went with a tissue valve. Also recommended a surgeon that has operated on several firefighters and kind of gets what we do. This conversation was able to give me some perspective, not only support but encourage my decision for valve choice, and also let me know that others are out there and have gotten through it.

I realize it's hard to track down firefighters with similar situation. I know there are a bunch of us out there, but then there is that whole feelings and reaching out thing that are tough for us. There are some firefighter specific blogs and forums you might find bits of info but there just isn't much out there.

Places like this forum are great. These people on here may not be in the same profession but are absolutely awesome caring people who have so much knowledge and insight to offer. There are many on here that are young and active. Regardless of their particular condition, they have been there and experienced many of the same thoughts, feelings, frustrations. Encourage him to read the stories of others and eventually reach out. Have him just stalk for a while. I'm not very active on the forum as my journey has been short and uneventful and I don't feel I have a lot to offer...yet. People on here are still so quick to respond and offer support and advise. This is still out of my comfort zone yet I'm always glad when I interact.

Again, please feel free to reach out to me directly if you or him would like. What part of the country are you guys? I live in Fort Collins, CO and work for a Denver suburban FD.