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Is it selfish of me to self-grieve?

 

I found out a few years ago I suffered a congenital lung disorder (restrictive lung disease/RLD, where your lungs are restricted from the outside from expanding to proper capacity whilst breathing).  RLD eventually causes excessive pressure in the arteries leading to the lungs, as your body is starving for oxygen due to insufficient lung volume.  The excessive pressure is known as pulmonary hypertension and is dramatically life-shortening.  My doctors, at the time, said 20-30 years more and that was it.  I was sort of glad to hear that, since 20-30 more years isn't bad, and at least I know to hurry up with my life.

 

Over subsequent visits with doctors, though, worse and worse kept unraveling.  We found last year that the RLD was caused in part by a chest wall deformity that should have been fixed when I was a child.  When I was a child, none of my docs noticed this.  This is not something you want to hear (i.e., "you could have been saved from death but your care team was too incompetent").  Particularly insulting since I always observed to my doctors that my armspan was much longer than my height, and that this could mean something wrong (turns out it does!). 

 

My lung vital capacities are around 30% that of normal (where 100% = normal).  Statistically, 99.9% of people have a higher lung capacity than I do, at least compared to their oxygen needs.  I'm in the "hazard zone" according to my current docs.  One more bout of pneumonia is likely to be the end of me.  I am getting thorough lung scanning (V/Q and all that jazz) done next month, although I don't know if I want to know the results.  Maybe I'll just ration with myself that these doctors were as incompetent as the ones who failed to diagnose my thoracic restriction (though that's probably not the case).

 

Then again, it's always wise to have prior knowledge that you're about to drop dead (most people, IIRC, don't have that privilege!).  No, I didn't choose to be born with this crap, and I know that a lot of people have it far worse than I do.  But these are things you don't want to learn in the middle of doing your PhD!!!

 

It would be nice to hear from others who have suffered grave physical or neurological disorders.  My lung disease I think has given me PTSD.  Then again, being told your life is going to be rather short will give most people PTSD!!

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Hi Like minded.

 

Just here to tell you that you are not alone. Being afraid for your life is scary. I've got the  armspan that is wider than my height and plumonary artery hypertension too. I've got some neurological wonkiness aswell. I'm afraid for my life because I think the Pulmonary Hypertension will be the end of me. It makes my anxiety go thru the roof. One thing I do that helps is to take Carnitine. It helps cardiac output and my levels tend to run low because I'm vegetarian. It can't hurt to try it. If you have sleep apnea, like me, that will contribute to the hypertension and needs to be treated. Every so often my lips turn dark purple/blue and that scares me. Then dealing with mental illness on top of it all Yikes. Enough already.

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Thank you Titania for the report on your friend.  My disorder has yet to be genotyped but is probably Ehlers-Danlos syndrome (type 4).  It's a totally different gene from that which when mutated causes Marfan's, but the COL gene family provides similar structural support as the FBN (Marfan) family does, at least when it comes to regulating our armspans.  Mutations in either could result in compromised respiratory function.

 

I have read papers on PTSD and medical syndromes... apparently survivable cancers are the #1 medical cause of PTSD.  I am sure that other chronic survivable but debilitating illnesses could do the same.  I think as lachesis said, being afraid for your life is scary (and could lead to PTSD, IMO) -- the soldier at war is afraid for his or her life and will later suffer PTSD; the rape victim has a similar situation.

 

lachesis -- While I am very, very sorry to hear about your problems, it is great to hear that I'm not the only one around who's batshit with comorbid physical illness.  :smartass: I don't know what your measurements are but my armspan is 74" while my height is 67".  My pulmonary hypertension is mild thus far but is there, and it's not something that one wants to be there in the first place, as you may well know!!  I will look into the carnitine thing, thanks for the tip!  While I am a gratuitous proteinovore, I'm not sure even the meatiest diet will meet the carnitine needs of someone with issues like ours. 

 

The lips turning purple thing is just plum scary if you ask me.  Granted, my nailbeds turn dark purple, so maybe I shouldn't be talking.

 

And then there's the MI................ :smartass:

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I wasn't meaning to imply that medical conditions aren't a cause of PTSD, just that the PTSD symptoms and the grieving around an diagnosis can manifest differently. They are both totally equal reactions and there is no reason why you couldn't have PTSD, just that PTSD is a very specific set of criteria and that it's worth bearing that in mind. I agree that a diagnosis is traumatic and no one can measure that trauma because there is no scale for that suffering.

 

Good points there!!!

 

I guess there needs to be a 'peri-traumatic stress disorder', i.e., emotional trauma experienced in the field! 

 

I think a lot of us here would qualify for it.

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Titania, I totally understand and am clear on the fact that you respect what I am going through.  No worries there! =)

 

I also have to agree that those of us with odd/rare disorders probably do need some more support... thank you very much for bringing up that point!

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Thanks for bringing up the point on technology in treating disorders, Titania.  As a computational medicine student myself, I should have figured that one out earlier! :smartass:

 

The disorder I have is similar to Marfan's (officially it's Ehlers-Danlos I with mild Osteogenesis Imperfecta).  Maybe I'll figure out how to construct a spine stretching device...

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