Continuing my career with marfans?

DragonClaw

DragonClaw

Emergency Medical Texan
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So I've not been as active lately, but something came up.

It looks like I've got Marfans. I'll need additional testing, but it's a 99% thing.

I've already had dislocations, among other things. It explains a lot of my symptoms, inability to gain muscle, severe bruising, slow healing fatigue and etc

I've got a systolic murmur as well.

I feel like my career is over, as the physical strain would be too much. I'm about halfway through my paramedic degree, but now I don't even know if I should continue.

I'm not asking for antler to decide, but I would appreciate a weigh in based on this diagnosis.

It's progressive, so I don't know if it's worth it to stress my body now and pay for it later.

Do you know anyone with this condition that is able to safely work the job?

I feel heavily demoralized. But I don't know how much of my thoughts are based off speculation or truth or worry.

Additionally, I'm about to be 25. Most people get diagnosed around 19. And past 32, you're pretty much toast. I'm not sure how big a factor later diagnosis will pay into my ability to work a physically demanding job.

Thank you
 
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Life expectancy with Marfan's is ~70 years these days, though you're probably in for a lot of big cardiac/vascular surgeries to make it that far.

Unfortunately, one of the things you really want to avoid with Marfan's is straining as you would do with lifting heavy weights. EMS often involves picking up heavy people off the floor, lifting the stretcher up, transferring patients over into the hospital bed, etc. You can take blood pressure lowering medications, but it's still probably best to avoid those things.

I wouldn't jump to conclusions just yet - do the testing, see a specialist and hear their opinion... But I think there is a good chance that working as a street medic may not be in the cards for you. I would start thinking about your exit plan - you could probably still work as a paramedic in an ED as a tech, become an EKG tech, get involved in education, go to RT school, PA/MD/DO school, there are lots of options still that would make use of or find the paramedic background to be useful!
 
Gurby said:
Life expectancy with Marfan's is ~70 years these days, though you're probably in for a lot of big cardiac/vascular surgeries to make it that far.

Unfortunately, one of the things you really want to avoid with Marfan's is straining as you would do with lifting heavy weights. EMS often involves picking up heavy people off the floor, lifting the stretcher up, transferring patients over into the hospital bed, etc. You can take blood pressure lowering medications, but it's still probably best to avoid those things.

I wouldn't jump to conclusions just yet - do the testing, see a specialist and hear their opinion... But I think there is a good chance that working as a street medic may not be in the cards for you. I would start thinking about your exit plan - you could probably still work as a paramedic in an ED as a tech, become an EKG tech, get involved in education, go to RT school, PA/MD/DO school, there are lots of options still that would make use of or find the paramedic background to be useful!
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I've got the high arched palette, the overvbite, temporomandibular joint disorder, dislocations, easy bruising, never could put on weight, fat, muscle, my joints naturally hyperextend. I've got the long fingers and toes, compared to the woman in my family, I'm tall.

I saw a rheumatologist that found the arched palette, and murmur.

Talking with my dad, grandpa had flat feet, was pretty thin. He had a caved in chest and had to get surgery for it. He died at like 44? Heart issue I think. Nobody was with him when he died.

My little brother has a very short jaw, he's 5'11 or so and just turned 17

My 17 year old cousin is 6' and they are both very thin. My dad says my cousin has a bit of a weird chest.

I'm banking on having it.
 
E tank said:
Sorry about that. Sounds tough.
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I will have to do a lot of discernment and thinking. I know that.

Originally I thought "**** it, I'll be a field medic anyway"

But then I though about how if I passed out due to a heart issue, got a collapsed lung or a more severe dislocation or such, then it wouldn't be fair to everyone else. I knew the risks and they didn't (presumably they don't know) , but I chose that anyway and now everyone else has to pay the consequences. Downright dangerous.

I don't know if this is a reasonable risk. Half of EMS are people who need to drop 50-100 lbs. But that's not right either. But there are people who are in EMS with epilepsy, they just manage with meds.

I just don't want to be that weak link that causes harm to others. If I do it and it harms me, I signed for it. They didn't. I don't know if I ask a doctor what kind of answer they'll give.

"I mean, you could. There are risks but if you want to, that's your choice"

"No, never, the risk is too big"

"You should try to live as normally as you can"

*shrug*

"Not my decision to make"

Etc etc

I guess I've just been overthinking per usual. The rheumatologist did tell me to never do yoga because my joints are too loose and I will push them past their reasonable boundary of movement and risk damaging the tissue that isn't made to be used as much (that is outside the joint's normal range of motion)

I'll be getting an echo, I'm sure. I have had chest pain and limbs that fall asleep very tingly, have had abnormal sensations in my legs as well. It says the sac around the spine expands and causes issues, as well around the brain and spinal cord. I've had a couple bad headaches and 1 REALLY migrane (lying on the floor in tears for an hour and 4000mg of Tylenol didn't touch it). I never figured out what the migrane came from. I don't know if it's related.
 
Aortic dissection is what I would be most nervous about, with regards to heavy lifting / EMS work:

pubmed.ncbi.nlm.nih.gov

Catastrophic cardiovascular consequences of weight lifting in a family with Marfan syndrome - PubMed

Marfan syndrome primarily involves the musculoskeletal, cardiovascular, and ocular systems. Isometric exercises such as weight lifting lead to significant stress along the aortic wall and predispose patients to dissection and rupture. A 30-year-old male patient presented with a complaint of back...
pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov
 
Gurby said:
Aortic dissection is what I would be most nervous about, with regards to heavy lifting / EMS work:

pubmed.ncbi.nlm.nih.gov

Catastrophic cardiovascular consequences of weight lifting in a family with Marfan syndrome - PubMed

Marfan syndrome primarily involves the musculoskeletal, cardiovascular, and ocular systems. Isometric exercises such as weight lifting lead to significant stress along the aortic wall and predispose patients to dissection and rupture. A 30-year-old male patient presented with a complaint of back...
pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov
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I agree
 
I've got an appointment in November with a specialist. She's a top doctor even it comes to marfans and genetics.

Before I see her, they're going to schedule me an echo. They're going to try to bump my appointment up, though.

In the mean time, I overthink. I don't know what else to do but to think about it. I'm not going to think myself better, but I just have so much uncertainty now. I have a couple life insurance policies, so I guess at least that is covered in the mean time should something acutely happen.

I did learn that the thing about not paying out for suicides isn't quite true. Usually it's a waiting period. That would be 2 years in October.

I did start a TCA and an seeking treatment for all of my prior issues.

I had hope for getting over my autoimmune, I've been doing well on it. In remission. Worked hard with two therapists and a psychiatrist. And now it feels like it was for nothing.

I know the human condition is terminal, but I guess I had let my defenses down and had an image of my head of having a long and happy life. But I feel like I've just hit the downslope and everything has been for naught. I'd sloughed off that feeling I wasn't meant to live very long for just a brief moment only to fall back into it with further conviction.

I could do nothing about this and then I won't make another 10 years. It picks up speed dramatically when untreated and being 25, I guess this makes it my midlife crisis.

I guess I just wished anything I did meant something, was some use, but I just feel ever useless and ever unimportant, like I can't do anything right. Wasn't even born right.

I guess it's all been a big joke. It feels like a movie, how can **** last this long and it not be deliberate. Like it doesn't really seem to matter how I try to live. I beat the odds before, but wish I hadn't.

I don't even know if my organs will be useful for someone now.

I'm engaged now, but I feel like I'm condemning him to the suffering I can't seem to live without. It just finds me. Misery loves company. I feel guilty planning a wedding knowing what I know when I feel like the best thing for him is for me to just dissappear one day without a trace, leave a note so they know I'm not lost, but just go. I got over that once, no twice, with the autoimmune, the depression, PTSD and anxiety, but now?

He doesn't deserve this. He deserves better.

I've seen people care for the chronically ill, even if they do it lovingly, their heart sags in their chest as the weight bears on them. It's almost a sigh of relief when the patient passes.

Anyway. I'm rambling now. But I don't know how I'm just supposed to get over this and be okay with it. And drag someone down with me.
 
People with Marfan's can live long, happy, reasonably healthy lives. Average life expectancy is not that much lower than general population. Yes, you will need to take blood pressure meds, will likely need to have your entire aorta replaced with goretex sometime during the next 40 years, and will need to avoid lifting heavy things. But it is not a death sentence by any means and doesn't mean you will be a burden.

You are obviously very depressed and should try to talk to a professional ASAP.
 
Gurby said:
People with Marfan's can live long, happy, reasonably healthy lives. Average life expectancy is not that much lower than general population. Yes, you will need to take blood pressure meds, will likely need to have your entire aorta replaced with goretex sometime during the next 40 years, and will need to avoid lifting heavy things. But it is not a death sentence by any means and doesn't mean you will be a burden.

You are obviously very depressed and should try to talk to a professional ASAP.
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Being a benchwarmer? Cool.

Maybe I don't want to live half a life, being very careful not to get my heart rate above 70 in case my 131/86 ruptures my glass cannon of an aorta/heart. Maybe I don't want to be robo-meter maid because he can't be a real cop.

Guys can you carry this pillow stuffing my muscles can't do **** and I might dislocate my wrists again.

This remeron isn't helping , and they won't even give me a letter for an ESA. So I'm just gonna quit them.

I really don't think it's going to be a semblance of normalcy.

In a way I guess it's kinda validating my weakness. No matter how much I worked out or trained, I could never get strong. Putting on muscles was incredibly hard. Everyone just saw me weak because they thought I was lazy, didn't care, didn't eat right, or whatever.

I had this image in my head that one day I'd be strong. I'd prove them all wrong. But I guess not.

I think this is the downhill for me. Maybe I don't want an aortic arch replacement. Maybe I don't want to eat a medicine cabinet every day, to go with all the other things wrong with me.

Cancer patients that don't want to spend their life in the hospital or hooked to machines or taking meds never get that kind of resistance. People nod and understand.

This body was never supposed to be permanent. I feel like I cheated just to live this long anyway. I thought it was supposed to be me, not my brother.

I absolutely loved working the ambulance. Got me out of bed. Extra starch on those uniforms everyone else tossed in the washing machine because I wanted to look sharp and professional. Laced up boots that got a shine every now and again. Kept my own penlight on me because half the time the truck cheapies didn't work and I wanted to be prepared. Gobbling up all the clinical information I could absorb even if I doubt fully understand it, because I was confident of day I would. Looking to be the kind of provider who both held hands and didn't take ****. I felt proud to look after my partner, I wanted to be the person you wanted on your truck. I remember when a smart CCT medic told me she'd ride with me any day. I felt somewhat accomplished. People would request to pick up a shift with me because they heard I was good to work with.

I worked hard towards that red patch with the gold trim. I wanted it, more than hoping, I was doing

My heart was in it. Truly. I still feel that way. I love medicine and being out in the field is the cherry on top. Now I can't quit thinking about how I'm a liability. I was about to start a new job, one I thought would be good for me. Trying to balance school and all, planning and financing a wedding, dealing with the family. There's a lot on my plate.

But I feel like this just shattered anything I'd hoped for. I feel like anything I've held out for is a lie. My hopes of just pushing through difficulties with sheer willpower just got a reality check.

This was all just a short lived fantasy of thinking I could help people in a way I felt mattered. I can't help them and I can't help me.
 
I told my dad years ago I thought I had it, as a young teen. I gave him a few symptoms like positive wrist and thumb sign, my build, etc.

He didn't even give it a second though. Dismissed me as being lazy and looking for excuses. Just weak and pathetic as usual basically.

My fiancé didn't think I had it either. I did have a couple episodes of chest pain and palpitations, but everything came back normal for the standard tests and nobody looked at the possibility of marfans. A 12 and chest x ray meant nothing was wrong with me.

They thought I was just hyping myself up. Just worrying too much. Etc etc. So I let myself believe that. Leaving the rheumatologist's office I went to my car and cried, because it was like being told I wasn't crazy. I was right all along but nobody wanted to listen.

And I feel a bit betrayed by those who are supposed to support me. Why should I try to live longer when there's no purpose to it.

I don't think I was supposed to make it this far. It's a fluke that will be remedied.

I hate being right.
 
Your Father was partially correct in treating you NORMALLY.

You currently have NO MEDICAL RESTRICTIONS; Live life to the fullest.

I've always gotten 2-3 2nd Opinions with a major diagnosis, as Doctors are like EMTs and Auto Mechanic, (some graduated Cum Laude and come with a 70.1 GPA).

Worrying about "What-Ifs" all your Life will lead to an accelerated early ending, (from undue stress).
 
HardKnocks said:
Your Father was partially correct in treating you NORMALLY.

You currently have NO MEDICAL RESTRICTIONS; Live life to the fullest.

I've always gotten 2-3 2nd Opinions with a major diagnosis, as Doctors are like EMTs and Auto Mechanic, (some graduated Cum Laude and come with a 70.1 GPA).

Worrying about "What-Ifs" all your Life will lead to an accelerated early ending, (from undue stress).
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Ignoring a diagnosis of Marfan syndrome will lead to an earlier ending, (from ruptured aorta).

pubmed.ncbi.nlm.nih.gov

Life expectancy in the Marfan syndrome - PubMed

Data reported in 1972 indicated that lifespan in patients with the Marfan syndrome is markedly shortened, and that most deaths are cardiovascular. This study was performed to determine whether survival in the Marfan syndrome has changed since 1972, and to discern whether treatment (medical or...
pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov

There have been a lot of advances in medicine and surgery and a lot can be done for these patients to allow them to live long and fulfilling lives.

I was just part of a team that took care of a ~70 year old Marfan patient who worked as an avalanche scientist (didn't know that was a thing) who did a lot of back-country skiing and had climbed Denali. Guy is crushing it and has definitely lived his best life, and we hope he's still got a few more years left at least.
 
We’re right back to where we were. This isn’t a place for medical advice and it’s not a mental health resource. You need both from QUALIFIED providers. Spewing it here and wallowing in self pity does nobody any good. GET PROFESSIONAL HELP.
 
HardKnocks said:
Your Father was partially correct in treating you NORMALLY.

You currently have NO MEDICAL RESTRICTIONS; Live life to the fullest.

I've always gotten 2-3 2nd Opinions with a major diagnosis, as Doctors are like EMTs and Auto Mechanic, (some graduated Cum Laude and come with a 70.1 GPA).

Worrying about "What-Ifs" all your Life will lead to an accelerated early ending, (from undue stress).
Click to expand...

Yes, and the people whose parents have huntingtons should just live life as if they're perfectly healthy and never get tested.

I've got an appointment scheduled with a top geneticist, they'll schedule me for an echo before I have the appointment with her.

Not much to do now but wait.

I've had one prior episode of syncope, but I'm not sure if that's a cardiac/vascular issue or something else. It wasn't a seizure, thus far I have not suffered the maternal family curse of epilepsy.

It's possible it's related, but I don't know. It was an isolated incident after ... unwise choices, shall we say. (Not SI/SA)

But the bottom line is, early diagnosis is key. And I guess I'll see what they say. Another thing is, with Marfan Syndrome and other conditions, they treat based off of clinical criteria as well. Testing isn't absolute. So far it's walking like a duck and quacking like a duck.

Regarding other issues, at least my autoimmune is in remission, I've switched psychiatrists and will be going to individual therapy.

I'm sure Lorsartan is in my future.

Additionally, my father, growing up, was an absent *******. (My mom was too, but that's beside the point). I've been to doctors and he's tossed out their diagnosis to tell me his life philosophy of why they're wrong. "I took premed classes in college". Ignored the factors of childhood PTSD, Anxiety and depression in my life. Makes assumptions and false judgements to suit his narrative.

He was an excellent CEO, but a poor father. When it came to needing a firm decision quickly and being able to commit to it, he was your man. If you needed a loving, caring and empathetic man, he was not your man. Everything is conditional and we rarely met those conditions. We were little runtime errors that frustrated his life's code.

Don't assume someone's father knew best or even meant well when you don't know either of them.
 
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