New lung?

[annekat]

Oh, I can relate.... it is very time consuming getting involved with the forum and if you get tired fast, then you wouldn't push yourself to always follow-up. I didn't post for a long time and then when I did, I started slow and then maybe went overboard.... but I live alone and have no responsibilities to other people, and since I didn't have the energy to clean my house, etc., the forum was one of the few things I could do.

I also got something of an apology from my ENT doc, who'd been treating me for 2.5 years for sinus and ear issues, and I'd also been getting allergy shots for two years in his office suite. When my saddle nose appeared, and I'd already learned some things about WG, I went marching into his office and got a dx by biopsy of my septum. I could have pursued that earlier but of course didn't want to think that I had it any more than he did.

I never had the purpurea or a lot of the other problems you've gone through.

Don't wear yourself out posting here, and do take good care of yourself! Don't worry about taking out the garbage or bringing in groceries.

[Debbie C]

I had purperea last year on my legs and didn't know what it was so I googled rashes with wg and there was a picture that looked just like my legs. I went to the er and told them and they insisted I had nothing but poison ivy. I told them to go look it up but they wouldn't and I left with a script for antibiotics which I threw in the trash on my way out.
Tom if you don't mind me asking,how old are you. The reason I am asking is that I have COPD also and I sometimes am having to take deep breathes just to try to breath. My pulmy has me a albutal sulfate with a nupulizer when I need it. I haven't used it in years but had to drag it out the other day and have used it a few times. Also I have noticed my sinues are draining into my throat and it feels like my throat is clogging up. I'm in remission right now and as far as I know have never had a flare.I hope this isn't one. I go see my ent Fri. but my pulmy is on vacation for 3 weeks.

[Tom]

I had purperea last year on my legs and didn't know what it was so I googled rashes with wg and there was a picture that looked just like my legs. I went to the er and told them and they insisted I had nothing but poison ivy. I told them to go look it up but they wouldn't and I left with a script for antibiotics which I threw in the trash on my way out.
Tom if you don't mind me asking,how old are you. The reason I am asking is that I have COPD also and I sometimes am having to take deep breathes just to try to breath. My pulmy has me a albutal sulfate with a nupulizer when I need it. I haven't used it in years but had to drag it out the other day and have used it a few times. Also I have noticed my sinues are draining into my throat and it feels like my throat is clogging up. I'm in remission right now and as far as I know have never had a flare.I hope this isn't one. I go see my ent Fri. but my pulmy is on vacation for 3 weeks.

Hi there Deb, I am 56 years at least til July. Its sort of ironic that theyt old you it was poison ivy, I was volenteeringat a lake and wasnt feeling well sor some time. I got up one Sunday morning and there was this rash, I told my wife it was like heat rash or I got into something. It was that day that I went to the ER and a Dr spotted it right away. The COPD can cause you to take deep breaths and not be able to exahle or even to get a full breath in. You could be having an exasperation, in which case you should be seen by a pulmo. The albuterol and nebulizer will help. With the wegs and the sinus', I do have what feels like drainage into the throat but I get more of the crusting in the nasal than anything. Again, back to the COPD, are you or were you a smoker? When I smoked, I would smoked upto 3 pks day. as I puffed away I would get what you are describing. I quit the smokes for an hr or so and the inhale/exhale function went back to a some what normal thing. After I quit in 2006 the breathing got better but I was out of shape. It all came to a head when I flared with my lungs and went a couple of months til I started coughing up the blood. It wasnt til a couple of months later that I had the rash on the legs and already had a lobectomy some time before for the growth on my lung that they dx'd wegs. I beleive, cant prove or say with certainty that I got wegs in all its glory during or just after my colon cancer surgery. Most of my complaints started after my surgery. I belive I would ask the pulmo for a re evaluation, do a spirometry test and maybe a blood gas test. I would also push the issue of the drainage with the ENT. Wegs is a weird thing. I am always on the lookout for a flare. What I am experiencing right now is what I would have been worriedabout the return of my cancer. I try not to get too consumed but I am at a point right now with my o2 levels and burning lungs that I am teetering on calling the dr or just going to the ER which is where she will send me anyway. Be vigilant and take no chances

[annekat]

Debra, your experience at the ER pisses me off. I guess most of us would be wasting our time going there with that symptom.

I don't have COPD and sympathize with you on that. I've had a lot of asthma in my life pre-WG and have also used the albuterol inhaler as well as steroidal ones from time to time.

I have had the sinuses draining into my throat throughout WG whether I was in a flare or not. But then I've never been declared in remission, though I thought I was close when this current flare appeared. Yes, it can clog things up and make it hard to breathe. The albulterol inhaler can help open things up when that happens. I try not to overuse it; I'm sure you know all about that. Anyway, I also hope you aren't in a flare; I wouldn't think draining sinuses would mean you are, but if it is out of the ordinary for you, then, I see why you'd be concerned. I hope the ENT visit goes well. I see my pulmy (main WG doc, so far) this Tues. to check on my flare.

[Debbie C]

Tom, I am also 56 until June ! I unfortunately smoked for about 40 years (about a pack a day ) but a quit the day of my lobectomy 2 1/2 years ago.I have an appt to see my pulmy in March after his vacation but I went and had a spirometry test done a couple of weeks ago and the guy doing it says I did better than he thought I would. I go to my ent Fri. and I am definately going to see whats up if I have a sinus infection or wg acting up. If you are feeling that bad and trust yr er I would go if I were you. The er closest to me doesn't have a clue so I hate going there. I really hope you start feeling better and it is not the cancer coming back.Keep us posted.

Anne.Yea I don't know if this is a flare or just a sinus infection or the change in the weather. But this just started recently. I guess I'll find out Friday. And as far as that inhaler goes I only use it in desperate times,I don't want to become dependent on it either.I had to take my mother for a stress test today so I picked up the cd and report I had from that barium drinking and x-ray ordeal for my hernia the other day. And he said my esphogus has folds in it !!!!!! That's a new one didn't have much to say about my hernia though ! Good luck Tues.