Tight Chest and low grade fever

[windchime]

I've had lots of issues with lungs since the bronch on Nov 7th. Things are getting worse though. Just before Christmas my chest got tight, but my inhaler helped it. Two days later I had to switch to the nebulizer to get relief. Today the nebulizer txs are only lasting about an hour or two and the wheezing isn't going away. I just took my temp and it was 99.2, normal for me is 97.8. So with all that I've decided to head down to my local ER and see what they offer for relief. It's not the best time to hit the ER being Saturday night and all. :w00t: But I'm afraid to wait any longer. Hoping for at least an X-ray, some O2, and a really good breathing tx that works.

I'll have my tablet with me and will keep you posted mostly because I know you care and I'll be bored. :bored:

[Debbie C]

Cindy,I was having problems breathing,but I also have copd and emphazmia ( along with lung issues from wg ) but my drs. told me to up my pred for a few days and I should be better > I did,it worked and I'm back to 5mg. Good Luck and I hope you don't have to wait in the e.r. all night!

[mishb]

Hi Cindy,

I hope you have been seen by now and that the breathing is getting better as you read this.

Hopefully nothing too sinister is going on, and you will be home quickly.

Take care

[windchime]

Update: it's 12:30 AM and I should be out of here soon. I got here at 8 PM so that's good time. They called the on call doc at my pulmonologist office and they decided it had to do with the prednisone taper. X-ray showed nothing and they don't think it's an infection. So I got a high octane breathing tx and 40 mgs of pred. Breathing is much better and I'm relieved. So pred is back up to 40 mgs until Isee the doc on Monday. I was down to 10mgs too. :sad:

[pberggren1]

Oh damn Cindy......:sad: I'm so sorry to hear about your tightness in breathing. Let us know what they do for you at the ER. Let us know what your blood results are when they get them there and also if the O2 they give you helps your breathing, also interesting in your O2Sats as well. We certainly do care Cindy. We are worried. I know personally what crappy breathing is like, it gets very scary at times.

[mishb]

Oh wow, back up to 40 pred.

I'm glad the breathing is feeling better and hopefully you will be home sleeping comfortably in no time.

Phil, how is your breathing going today?

[pberggren1]

My breathing seems to be stable. I went up to 40mg ed of pred from 5mg eod for about 12 days during the lung infection to help it out. Now I am back down to 10 and will be at 5 tomorrow and prob stay there for a couple weeks or more to make sure I am stable and hopefully improving. I see my Wegs doc on Jan 13th.

[windchime]

Oh damn Cindy......:sad: I'm so sorry to hear about your tightness in breathing. Let us know what they do for you at the ER. Let us know what your blood results are when they get them there and also if the O2 they give you helps your breathing, also interesting in your O2Sats as well. We certainly do care Cindy. We are worried. I know personally what crappy breathing is like, it gets very scary at times.

Thanks Phil . You are right not being able to breath well is scary. My O2 Sat was 92 when I got here which isn' t that bad. I had just made the hike from the parking lot breathing pretty heavily when I got here so I got things opened up. They didn't give me O2. I've just requested acopy of my blood results So I'll post later when I get them . Thanks to all for your concern.

[pberggren1]

92 is quite good for just coming from a walk. Hopefully they can get your breathing figured out soon. Not nice to be on high dose pred too long.

[pberggren1]

Cindy, what was your bronch in Nov for again?

[windchime]

Cindy, what was your bronch in Nov for again?

Bronchial Stenosis (they did a dilation or two) and to remove some calcium deposits that were blocking a couple of the bronchs. My lungs are quite unhappy with me right now.

I'm not sure what you're looking for on the blood tests. They didn't do Sed Rate, but the abnormal ones were: RDW is high at 18.1 (normal range 11.3-14.8) and MCHC is low at 32.7 (range is 33.0-36.0). I looked these up once I think they have something to do with red blood cell size. Everything else looks normal.

They are only keeping me on 40mg 2 days, then 20mg for 2 days, then 10mg. My thoughts are this will be too fast and that the 2.5mg taper per week isn't working so well for me either. Guess I'll wait to talk to the pulm office on Mon. Thanks for helping me figure this all out. It feels so good to breath easier. :thumbsup:

I'm glad you are out of the hospital and doing better. How's the new laptop?

[annekat]

Cindy, I'm sorry to hear of your breathing issues but glad things are getting figured out and dealt with. I'm glad the pred is helping and hope that you can shoot back down to a low dose soon like Phil seems to be able to do. We look forward to hearing how it goes.

Phil, I'm glad your breathing has stabilized and that you are able to lower the pred back down again. You are so right about the scariness of crappy breathing.... I found that out as a teenager with asthma way before I ever had anything like Wegs. I never got good treatments for it in those days so just had to suffer. It is appalling how parents and even doctors can be so insensitive about it when they have never had it themselves. My mother had breathing problems later in her life and apologized profusely to me for not having a clue what I was going through as a kid. And my dad was a doctor.... go figure.

[Debbie C]

Cindy, I glad that's all it was. I figured they would up your pred. but I didn't think that much. At least both you and Phil won't have to stay on it that high for long. Take care and try to get some sleep !

Anne, your dad was a dr. and never gave you or your mom anything for asthma ? Do you still suffer with it ?

[Alysia]

Cindy and Phil,
I am glad you two are breathing better, now we can all breath better :hug1:
I remember how scary it was in my acute state not being able to breath. I thought that I will not survive :crying:
I think that the pred is doing most of the work in clearing lungs and bronchi, so sometimes it is better not to hurry up with tapering it. I was about 3 months with 60mg and only the pred cleared my lungs, (no ctx) since I didn't have diagnosis of WG at that time but a diagnosis of BOOP. (but it was, of course, wg).
so try to "eat" your pred as delightly as you can. honestly, pred is one of my best friends in the last 5 years :love:

[annekat]

Anne, your dad was a dr. and never gave you or your mom anything for asthma ? Do you still suffer with it ?

My dad was not a pulmonary doctor or a general practitioner, he was a pathologist at a med school teaching hospital. We had a family doctor who treated me for bronchitis and such now and then, usually with a penicillin shot. By the time I got asthma, I was pretty reclusive and hid out in my room most of the time. I don't think anyone understood how bad it felt. It wasn't all the time. It was probably triggered both by allergies and emotional upsets, such as my parents arguing. No one took me to an allergist or anyone specifically for the asthma. There weren't as good inhalers and stuff available then as there are now. But I did get some of those, which only worked to a point; you could easily overuse them and they'd stop working well. Previously I had picked up things like Primatene Mist OTC, and Bronkaid tablets, which were pretty awful. I guess my parents thought I was handling it OK. At one point my dad prescribed me Theophylline, which was an old school med for asthma, and made me very jittery. He was not up on the latest. That's what he found in his reference books. By the time my mom had problems my parents were divorced so he was out of the picture. She got pneumonia and was treated with prednisone which I'm sure helped the asthma. But she had developed chemical sensitivities and it was with her for life, and she used a nebulizer. Mine was never as severe as all that, and it came and went, so I sort of fell through the cracks, it felt like. It wasn't bad enough for people to take too seriously, though I do remember some extreme discomfort from it. I did get better treatment as an adult, before getting Wegs, and allergy shots, which helped to some extent. Currently, the breathing problems I suffer can feel like asthma but I don't think they are. I think they are from WG, from stuff produced in my sinuses dripping down and collecting in my bronchii. Once I cough that stuff up, the breathing problems disappear. It's been awhile since I had anything that I consider true asthma, although any breathing problems can feel just as bad. Thanks for asking and giving me an opportunity to rant and vent a little.

[pberggren1]

I'm sorry to hear you also have bronchial stenosis Cindy. Mine is from the scar tissue from when the Wegs healed up on a flare a couple years back. At least your doc was able to remove the calcium deposits.

I think too that I might have tapered too fast with the pred. I tapered from 40mg to 5mg by 5mg per day. I took 5mg for the first time. I'm getting out of bed so that is a good sign. I will stay at 5mg for a few days and see how things go.

The new laptop is good. Will take some time getting used to.

[pberggren1]

I'm so sorry you suffered so much in your younger years Anne. Maybe it was a mild Wegs and not asthma.

[windchime]

Anne so sorry you had to go through all that as a teen. Must have been scary at times. I remember the Theophylline, I took it for several years in the 70's. I don't remember getting jittery, but then I was a busy single mom and didn't take time to pay attention to things like that.

Yes the breathing difficulty this week was a little scary as nothing I could do was helping. Since I'm new to the meds it didn't occur to me that the pred needed to be upped. Too bad the pulm office didn't figure that out when I called on Friday and told them my inhaler wasn't working and I needed some albuteral for my nebulizer. Could have saved me $100 copay at the ER. I'm going to ask them about tapering at a slower rate. I've been doing 2.5 a week and see what happened. I'd rather go slow and be able to breath.

Alysia thank you for your concern. I get warm fuzzies every time I come to this forum.

Just a note about the ER. I left at 1:15 AM. It was eerily quiet in there. There were no patients lined up in the hallways, there were beds available, and best of all there was no one waiting in the waiting room. Truly spooky. This is a level 1 trauma center for a metro area.

[annekat]

Well, although spooky, I guess it is good to know that no one was having enough major problems to keep the ER hopping!

Thanks for your sympathies on what I went through with asthma in my younger days. I'm sure some people had it worse. Part of what makes me feel bad is that people didn't pay enough attention to it because they were so caught up in their own problems (my parents, drinking too much and arguing).

Cindy, I think the theophylline made me jittery, but I know the Bronkaid tablets also did, since they were made of epinephrine, or ephedrine or something like that. Come to think of it, the theophylline tabs may have also contained ephedrine, or I am confused about what I took when. Creepy stuff. Yes, it was in the 70's. People took all sorts of creepy stuff in the 70's, recreationally and otherwise!

Phil, I too wonder whether I could have had some form of light Wegs at a early age. I guess I'll never know. I think a lot of people probably have similar problems without ever developing Wegs. But maybe I was predisposed. I do know that when Wegs hit me for sure, in the fall of 2008 (even though I was undiagnosed), I was suddenly hit with all kinds of things I'd never had before such as ear and sinus infections, and joint pain, and not so much asthma. When it went into my lungs, which led to me being dx'ed, it was clearly not asthma but something else. I still felt I needed inhalers for breathing problems, but they didn't do a lot of good. When you can't breathe you will try just about anything.

[NikkiNicole]

I just saw this! I'm so glad to see that things have improved. I was supposed to have blood work done today but it's Sunday and the lab isn't open. Back to it tomorrow!
Again, I can't say enough that I am glad you are doing well. I have not been back to the ER since my diagnosis, I'm dreading it from the past and from all the horror stories I've read on here about how ER docs treat this sort of thing.

[windchime]

I just saw this! I'm so glad to see that things have improved. I was supposed to have blood work done today but it's Sunday and the lab isn't open. Back to it tomorrow!
Again, I can't say enough that I am glad you are doing well. I have not been back to the ER since my diagnosis, I'm dreading it from the past and from all the horror stories I've read on here about how ER docs treat this sort of thing.


Sorry you had such a bad ER experience Nikki. I was very fortunate in that all I had to do was say Wegener's and that my Pulm doc is an attending at the hospital and they called his service and talked to one of the on call pulm doc. So I was blessed there. Thank you for the warm wishes.

Anne you could be like me with an early dx or in your case no dx but still functioned well enough through the years to not need tx. I still thinking spontaneous remission of some sort. I'm sure it's not totally unheard of.

Today I'm still having tightness, but the albuterol via nebulizer is helping. I also started my humidifier.

[annekat]

I am actually not inclined to think that I had Wegs at an early age. I think the issues I had were pretty common. They dragged on because they weren't as severe as some kids', e.g. the ones who had to get allergy shots every week. My issues came and went and seemed largely related to emotional upsets, or in other words, stress.... which could of course trigger some level of Wegs, but I also believe any sort of illness or disorder can be made worse by stress. By the time I really know I had Wegs, I was 58 years old and had not been having issues with asthma for a few years. It seemed definitely related to seasonal pollens and such, and each year was different. I know 2005 was bad, but then it cleared up. And I rarely got sick with colds or anything like the bronchitis I had as a kid. I did have some weird tinnitus and head congestion around 2000 or so, and it went away. So it is possible I've had some level of Wegs all my life, with spontaneous remission in between, but I'll bet we could say that about a quite a few of us here, and we will never know.

[Debbie C]

Well I am glad everyone is breathing a little better now:thumbsup: Cindy next time just come on here and ask before going to the e.r.,we don't charge as much for advice !!! Just kidding better safe than sorry.It is a terrible feeling when you can't catch your breathe or get enough air.

[annekat]

Well I am glad everyone is breathing a little better now:thumbsup: Cindy next time just come on here and ask before going to the e.r.,we don't charge as much for advice !!! Just kidding better safe than sorry.It is a terrible feeling when you can't catch your breathe or get enough air.

Yes, and I will never understand what people with bronchial stenosis go through unless someday I get it myself! Knock on wood, I won't. I too am glad that both you and Phil are breathing easier, Cindy.

[Alysia]

me2, glad that you2, Phil and Cindy, are feeling better :thumbup: it takes time to heal. but with our love and prayers and enough pred :wink1: you2 can do it.
Anne, I wish I was your friend those days, when you where suffering, and seems too much alone with it, but I think that I was not born yet :unsure:
I think that I had mild WG when I was a child, lots of ear infections with blood in my ears, and later at 17yo uncommon arthritis with strange wounds.
Debra, I didnt know that you have more lungs issues like copd. I am sorry. how is it affecting you ? (if I can ask?) sending hugs and love and prayers to you2.

[Debbie C]

Alysia, my breathing seems to be worse during the winter,since I am stuck in the house and not able to walk or get "fresh air". My ruemy gave me advair and a inhaler to use and I also have a neubulizer machine but I don't use any of it. I don't want to become dependent on them and my breathing isn't is that bad ( I do have moments when I have to try to take deep breathes ) I need some of that Mediterrain sea air !!!!

[Alysia]

Hi Debra.
you are most welcome to breath mediteranian breeeze :biggrin:
it is also too cold here lately so instead of walking outside, I do some "aerobic exercises" at home, "walking" on the carpet, "running" and similar... clearing the airways... this winter is too tough, too much coughing and other annoying stuff :frown:

[annekat]

I think we should get Phil to fire up the Batplane and take us all for a surprise visit to Alysia's house! But maybe wait a few months until the weather is reliably good.

[mishb]

Sorry ladies, the weather is gorgeous here.

I'm sure Batman can fly to Australia during your winters (our Summer) and then he can fly me over there for your Summers (our Winter)

This appears to be a win win situation for everyone :flapper:

[Debbie C]

That sounds like a winner to me Michelle,we just need to get Phil going !!

[Alysia]

yes, we will be like the birds, flying to the warmer places...
breathing the oceans breeze on our way....

https://fbcdn-sphotos-d-a.akamaihd.net/hphotos-ak-prn2/1456070_1435178620027617_168454707_n.jpg

[Dirty Don]

Hey, it's 70ish here everyday, clear, warm, blue skies, soft breezes AND all you northerners' frickin GEESE!!! I hate gooseshit! Doesn't do much for a golf course!! Fly home!!!

[annekat]

Hey, Don, they are your geese as much as they are OUR geese! In the summer, they come up here to get away from the heat and parched earth! That is what geese do, and they were here before we were! That being said, yes they can be nuisances, and the city of Olympia has gone so far as to GAS them in the park around the lake, in the past. Kinda makes me cringe. It takes a lot for Olympia to do something like that.

[Pete]

Ah, Don!

Nothing like lining up a putt around the goose poop!