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CarolG
11-25-2008, 11:51 AM
:oI was finally diagnoses with WG after being sick for nearly one year. I was treated for pneumonia last fall '07 until I went to the ER where I work as a nurse manager because I just couldn't keep going anymore. That was Dec 17th and after a CT scan the ED doc said I had metastatic lung cancer!!! I was blown away and it was one week from Christmas. Needless to say I was devastated and it was a very difficult Holiday. Well the story gets crazier, but finally I was admitted to another hospital on Jan 18th and told I had blood clots in my lungs in addition to the lung ca. Well by the time I was discharged from there (3 days later) they decided I probably didn't have lung ca, but I did have blood clots. The other nodules they had seen originally they weren't sure of the cause. I was then treated for aspiration pneumonia in June, because I continued to cough up blood if they took me off prednisone. That was after i once again was hospitalized with the diagnosis of lung ca again. Finally my pulmonolgist decided I might have some type of vasculitis and referred me to a nephrologist and rheumotologist. The last physician diagnosed me with WG after tests alone, no biopsies because of being on blood thinners for the blood clots. I'm so sorry for rattling on, but I feel better just getting all this off my chest. I felt so sick for so long and I felt like I must becoming a hypochondriac. My primary physician, treating for the pneumonia for so long, kept telling me, "Well you know you are getting older and you just take longer than younger people to get well"!!! May I say I work 50 hours a week minimum and didn't stop working for over 3 months until I just couldn't go on and went into the ER. All my tests confirmed it was WG and my symptoms were almost textbook.
Well anyway, I've been on Cytoxan for nearly 3 months and prednisone 20mg/day for longer than that and I really was expecting to feel so much better by now. I'm still really short of breath with walking even a short distance. I'm able to work and do housework, just do everything with a break here and there. Should I not expect miracles too soon? Please thank you to anyone who takes the time to read this too lengthy note and responds in spite of it.:o

RCOSSIO
11-26-2008, 06:42 AM
It is a long process and unfortunately most of us have or had felt tired in the beginning. It does get better and with time you will notice the improvements. I can suggest that maybe you talk to your Rheumy about at least increasing your Pred. It helped in my case for 3 weeks when I needed the boost (even though Pred side effects can be bad).

All I can suggest is patience and take time to enjoy the "NOW" because now is what you have.

Take care and you will see 3 months from now how much better you will feel!

CarolG
11-26-2008, 06:47 AM
Thanks so much for your encouragement. I was in a "bad place" yesterday when I sent that message. It really is good to know that there are others who have and are experiencing my same problems. I think because I am a nurse, I am not use to seeing patients being misdiagnosed like most us have been.

Twice
11-26-2008, 07:40 AM
Hi Carol,

Don't worry about being 'in a bad place' and posting about your worries. There are a lovely group of people here and we all know about 'bad places' and can sympathise. It's a rotten situation to be in and it takes time to come to terms with. I can't think of a better place to get things off your chest.

Sarah