Fibrosing mediastinitis AND coronary artery blockage, whee...

[HistoriaTrixie]

I just don't want to keep banging on at DH and my IRL friends about it; I'm only 43, I've lost nearly half my lung function, have a 60% blockage in my left anterior descending coronary artery to boot. Due to meds/enforced lack of decent exercise (used to ride, play rugby, elliptical, etc.) I've gained weight to the point that not only have I gone up three jeans sizes, I have ($$$) leather boots that I can't wear anymore b/c my legs have swollen. Some of the worst parts are a) I visited friends a while back that I hadn't seen in 6+ months, and the friend who opened the door covered up quick, to her credit, but the shock then pity at the way I looked hurt, a lot; and b) I just feel like everyone around me in real life is sick of hearing about it. If I mention it around my kids (15 and 13) they immediately worry themselves sick, I can't say "ouch" without DH going on high 'do we need the hospital' alert, my mum has the same reaction as my kids...and my friends just change the subject. But, I'm scared, you know? Scared, and frustrated because until this happened I was always "young for my age" and strong, vital, stuff like that. Right now (it's -5*F where I live in Pennsylvania USA) I cannot even LEAVE THE HOUSE because of what such cold air does to my lungs. The phrase "shack-wacky" does not even begin to describe me, haha.

Is there anyone here with either/both of these conditions? For what it's worth, I got the FM after a bad case of histoplasmosis (endemic in the Ohio River Valley where I grew up) way back in 1998, and the scarring in my lungs wasn't even detected until 2009.

I don't have anything helpful to add but wanted to move this back up the active threads list for you so people might come across it as they wake up in Europe. Hope your teens are making the most of the snow

My son is, thanks Eastpoint. DD15 has been staying in 'protecting her voice' as she has auditions for a cappella choir later this week, but DS13 has a snowboard and is not afraid to use it! They have a 2-hour delay tomorrow at school (usual procedure for cold; closures are reserved for SNOWMYGOD situations) so they get to sleep in a bit (and so do I!) tomorrow.

My son would love a 2 hr delay everyday

No, no experience here either but just wanted to offer you some sympathy for your conditions and "shack-wackiness" (haven't heard it called that before! but I assume it's the same as cabin fever)

Hope someone who has relevant experience comes along soon

Sending this back up to visible

It's not significant enough for them to treat yet - apparently the threshold is a 75% blockage. I'm going to be just chock full of stents by the time it's done; two of the pulmonary artery branches in my right lung are squeezed closed by scar tissue and there's a newish procedure for stenting those as well, but it's a bit scary, given the fact that they are all the way closed and there's a slight-but-nonzero possibility that the stenting could irritate matters enough to make MORE scar tissue. Also, things are taking forever which just makes me feel like OH COME ON . My cardiologist tells me that once it's done, if it works out (I hate him using 'if' phrases here!) I'll feel like the Bionic Woman what with all the increased blood flow and oxygenation.

So what's the timescale for you? I think you sound amazingly resilient.

Maybe read about serrapeptase/ find someone who really knows - and what it can do for cleaning up arteries and scar tissue.