lung issues

**vdub** · 05-11-2016, 01:58 PM

I just got back from 3 doc apts in the city. Lung capacity is down to 46% -- SO2 is staying at about 90%. A diaphragmatic placation (tie it tight as a drum head) is being scheduled – not asap, but “sooner than later” (probably early June). Five days in hospital and a month of recuperation. Results should give me about 70% to 80% of lung capacity. I won't be running any marathons like I used to, but at least I won't be gasping for air all the time.

This will be a full cut-open type surgery vice the robotic stuff, so it’s a lot more dangerous and painful. What’s left of my right lung is squeezed in under my right breast and my liver is occupying the space my lung should be in – it looks pretty cool on the xray. The consensus of the docs is that the phrenic nerve damage (the nerve that controls diaphragm movement) was caused by Wegener’s. Wegs is certainly the gift that keeps giving.

**Pete** · 05-11-2016, 02:26 PM

I guess this means that in addition to adjusting your diaphragm, they're going to reposition your liver and lung? Hope the surgery goes well and you can run a 5k by year end.

**annekat** · 05-11-2016, 02:37 PM

Wegener's is never-ending in its quest for unusual ways to wreak havoc on our bodies, it seems. I'm sorry for the stress of a more dangerous and painful surgery than some, but hopeful that it will make a big difference in your quality of life. No need to be running marathons at our age, anyway. That was a great accomplishment for you at the time, but there are other things you can still do... working on cars, RVing, trips to Europe, and better breathing will make them a lot more enjoyable. Best of luck.

**vdub** · 05-11-2016, 03:19 PM

....they're going to reposition your liver and lung?

That's my understanding. Should give me a bigger pred gut than I have right now, eh?

No need to be running marathons at our age, anyway.

That's totally right, Ann.... Not being able to run a marathon is the least of my worries. I need to be spending all that money I saved over my lifetime. :-)

**MikeG-2012** · 05-12-2016, 12:49 AM

Further proof that there is no ONE BOOK that is about this disease. We all write our own book as we go along.

Wishing you immensely good luck and big breaths VDub!!

**Alysia** · 05-12-2016, 04:00 AM

I love your fighting spirit vdub.
Will you have to be on/off pred/ antibiotics/any special med - before/ during/ after the surgery ?
Keeping you in my daily prayers.

**Jaha** · 05-12-2016, 04:00 AM

I am so sorry that you once more have to go thru such a serious surgery. I am wishing you all the best for getting a great outcome from this very complicated surgery. Wegener's is the disease that just keeps on giving, maybe this time around it will give you something good. Please take care of yourself and keep us up to date with your status and recovery.

**Debbie C** · 05-12-2016, 08:36 AM

How the heck did everything get so moved around !!!???? Are you on any oxygen ? So sorry you have to go through all this but hopefully you will have a quick recovery and out spending money soon ! Let us know when they have a date set for the surgery.

**marta** · 05-21-2016, 08:06 PM

Wow, vdub!

"diaphragmatic placation"

Now that's a mouth full, too bad it's not a lung-full.
The gift that keeps on giving indeed.
Good thing you're YOU, and you've got this beast figured out.
Sending you super sonic energy and healing powers! Above and beyond the pred of course.
We can share lung-hole pictures once we're done getting them fixed (I've got a 3cm jobbie in my left side - a perforating lesion this go around, along with all the other granulomas littering the breathing space... yippee Wegener's

)
First we heal, then we laugh!
Or we can laugh while we heal... it might make it a bit quicker.