S.O.B. story

[andrew]

Hey hey
I've not been around much lately. Had my second chest infection for the year.

The lower portion of my right lung is collapsed due to 'collateral damage' from the intubation I had to have when I was in hospital prior to diagnosis. Incision cut a nerve that paralyzed part of my diaphragm and there we are.

Anyhoo...that particular part of my lung is very susceptible to chest infections due to the fact that it doesn't take in any air and get a good ol' cleanout. Sooooo....for the second time this year I had a horrid chest infection combined with a luvly deep, productive cough and horrible case of gout (unrelated).

The chest infection took two doses of two different antibiotics to start taking an effect. It has been around five or six weeks now and the cough is only just starting to subside. The gout is being treated with Prednisolone which gives me the irrits 'cause I don't like taking the stuff. Am stepping off the Pred from tonight. Tried it last week and the foot flared up overnight.

I'm happy to say that I'm on the mend now however I'm still coping with shortness of breath. I've been on ventolin and symbicort for the last few weeks however I've tried to stay off the stuff for the last few days with good results. Still getting shortness of breath when I walk and talk (not as bad now) but definitely noticeable walking up a flight of stairs.

Docs (there were many) took some x-rays and my chest is clearer than it has a right to be which to me is strange. Specialist (Immunologist) has again suggested Tracheal Stenosis and I have an appointment with a lung specialist on the 3rd so will see what he thinks.

So, having had two massive chest infections this year I have made a promise to myself to have the flu vaccination (started with the flu both times) next year. I didn't this year and I'd have to say I've been the sickest ever since diagnosis.

On the plus side. my ANCA is now down to 14 from 22 so I'm slowly getting there. Other blood work besides white cells (infection) and Uric Acid (Gout) is also looking good.

Oh yes...I have been unable to take any medication other than Pred for Gout due to being on Immuran. Doc is changing me over to Methotrexate 20mg weekly. I'm taking Folic Acid every day other than the day I take the Meth. Once I get onto that without the Immuran in a week I can start taking medication to reduce Uric Acid thereby hopefully eliminating Gout. It's a long process though (up to a year) so I'll have to suck it up for a while :)

So that's where I be :biggrin1: Will try and keep a bit more active on here too!

[Fran]

Very sorry to see you are having such a lousy time Andrew, I do hope you start feeling better soon. Take care of yourself - best wishes http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

[DEE]

Oh dear Andrew please take careof you DEEx

[Geoff]

Wow so sorry to hear your news Boss, I have been puting off having the flu jab but your story has made up my mind.

Hope you continue on the road to recovery (Does that lead to Cape Tribulation?)

[Sangye]

Aww, I'm sorry to see what you've been going through Andrew. Glad the Wegs dog isn't biting in addition. Big hugs to you, friend. :hug1:

[elephant]

Andrew so sorry to hear you have been going through a rough time with chest stuff. Hope next week is better for you.

[Brooke]

Sorry to hear what you have been going through Andrew. Rest up and get better soon!!

[LisaMarie]

Andrew,
Take care of yourself ....take the flu and pnuemonia vaccine if you already have not...the pnuemonia is only a twice in a life time shot unless u r over 65 yrs old then ya only get it once...Hope your lung stuff clears soon and WG stays asleep.....
Take care
Lisa Marie

[andrew]

Thanks all. Lisamarie, I had the pneumonia vax in 2003. Actually forgot I'd had that until you reminded me just then :) The WG will stay asleep or I will smother it with a pillow.

[marta]

Wow Andrew,

You sound like you've been having quite a battle. Man with this thing, if it isn't one thing it's another. Gross.
Take care and get lots of sleep (although the pred probably aint helping much with that front)
Hope you feel better SOOON!!!! Smother at the earliest sign of life with the WG - beat it with bats if you have ta.

Sending you good, healing vibes.

[andrew]

Take care and get lots of sleep (although the pred probably aint helping much with that front)


Bingo! Why didn't I think of that? LOL! I've been getting frustrated at lying awake for hours wondering why the $#^#@ I can't get to sleep and it's the Pred! I was wondering what had caused it all of a sudden. Sighs. Thanks for that. Might sleep better tonight now :)

[marta]

Bingo! Why didn't I think of that? LOL! I've been getting frustrated at lying awake for hours wondering why the $#^#@ I can't get to sleep and it's the Pred! I was wondering what had caused it all of a sudden. Sighs. Thanks for that. Might sleep better tonight now :)

What do you mean you might sleep better tonight now? Do you have a secret weapon against pred insomnia?????
I'm in the thick of it right now and lay awake all night shooting evil glares at my ceiling as the rest of the household snores away in slumberland.

[pberggren1]

Ya, Andrew, are you holding back on us?:wink1:

[Psyborg]

Sorry you've been having problems Andrew. I have to say that at 20mg I find I can take a Unisom (OTC) and will sleep through the night now. Figured it would be better than Ambien in the long term.

[elephant]

I spent almost a year not sleeping because of PREDNISONE ( maybe 1-2 hours a night), that's why I look like a Panda!

[andrew]

What do you mean you might sleep better tonight now? Do you have a secret weapon against pred insomnia?????
I'm in the thick of it right now and lay awake all night shooting evil glares at my ceiling as the rest of the household snores away in slumberland.

Hmmm yes perhaps I should have elaborated. I have this brick you see, and it's now suspended above where my head goes on the bed. I just untie the string and hello slumberland :)

Actually I cut down from 25mg to 12.5 last night so I'm thinking...well....hoping that by tonight or tomorrow night I'll be able to sleep ok. Plus, now I know the reason I'm not sleeping, I might feel a bit better about it. :)

[andrew]

Sorry you've been having problems Andrew. I have to say that at 20mg I find I can take a Unisom (OTC) and will sleep through the night now. Figured it would be better than Ambien in the long term.

Yeah I've thought of sleeping pills but have never been a fan for some reason. I'll take any other medication in the world but when it comes to sleeping tablets, I'm really nervous about them.

[marta]

Ahhhh, the brick. I like-ey. I'll have to keep that one in my back pocket for a rainy day. I'm with you on the sleeping pills. I've only taken them while in hospital - when they gave me the solumedrol and there's nurses around and I don't have to be a mom at the drop of a hat. I'm quite gun shy about sleeping pills, which is why I write this post at 12:46am - ha ha.

Hope you get good sleep and all the insanity goes away at the twitch of a nose. Remember Bewitched?

Thinkin' of ya.

[andrew]

Yeah I remember Bewitched alright. There are also reruns on here every night. I was going to try and get an early night tonight but UFC is on until 11.30 and I can't miss that. Times like these are when Pred is really useful :-)

[me2]

Well, I became wore down over a long period of time of being sick AND taking lots of drugs. I hate drugs. I'm mr natural food guy - even before Wg. But one thing somebody told me way back when was that it was most important to be well. If that meant a pill, weighing all the pros and cons, then so be it. I take a powerful sleep aid, diazepam, to help regulate my sleep patterns. Months, years of being bonkers all over the place with my sleep caused me to seek some relief. I wish I had done it sooner. It is not a magic solution but the being able to regulate when I go to sleep and the fact that I am guaranteed to get at least 3 hours continuous sleep has been a blessing.

Of course here I sit at 4 am telling you about this. hahaha Ok, its not perfect but I was practically going insane for not being able to go to sleep at a certain time and then crashing at times when I needed to be awake to the world and getting a few things done. (I used to tell people "Pred tells me when to get up, WG tells me when to sleep.)
I am always pushing the envelope to get back to a normal drug free existence (I'm a long way off right now) but first and foremost is to live as close to normal as I can- even if it is with the help of drugs.

[Sheena]

Hope your feeling a bit better soon Andrew. I think that my ANCA is about 14 at the moment too, just can't seem to get it down any further - BLAH

Interesting about the Pred making you stay awake, I hadn't even thought of that when I was going through sleeping problems, thankfully they seem to have passed and I sleep very well - not that it seems to make me feel any less tired. Anyway, I hope you get a better night sleep now that you are on less Pred

P.S. I hate Pred

[RCOSSIO]

I think you need another helicopter ride over the Great Banks :ohmy:

[Geoff]

I'm with you me2 about the sleeping tablets. If I dont get my shut eye then its murder around here! I use Zoplicone which I am reliably assured is non addicitve. Had to laugh at Andrew and Marta's recollection of Bewitched...now if only I could wiggle my nose and come up with a cure!!!

[elephant]

Bewitch was one of my favorite shows as a kid. Funny thing my daughter and I were trying to wiggle our noses a couple days ago!

[marta]

Bewitch was one of my favorite shows as a kid. Funny thing my daughter and I were trying to wiggle our noses a couple days ago!

me too - on both counts. Fave show, and I was wiggling my nose a few days ago with Hana. Also I think Brian wanted to marry Samantha when he was a kid.

Wouldn't it be great if it would work that way... wiggle wiggle and poof, WG be gone.

[elephant]

LOL! That is too funny Marta! I wanted to be Samantha...she was so cute and powerful!