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survived 1 year with Valley Fever!!and counting

 
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tucsontony



Joined: 31 Dec 2007
Posts: 13
Location: Tucson, AZ

PostPosted: Thu Jul 10, 2008 5:02 am    Post subject: survived 1 year with Valley Fever!!and counting Reply with quote

Well, it's been a year since I was first diagnosed with VF. I have moved back to Maine. I have a good pulmonologist and Infectious Disease doc and also a great Thorasic Surgeon. Friday the 13th! 6-13-08 I had surgery on my left lung. I had a very large soft tissue mass that tested positive on pet scan. The biopsy done was diagnosed as Fungal. I met yesterday with the ID doc, he said it was much more serious than they first expected. He has put me back on the fluconzole, 400mg a day, and said I'd most likely be on it for a year. He doesn't take much faith in the blood tests as he said they can show negative. My ct scan taken a few days after the surgery while still in the hospital, shows 2 more small nodules, on my right lung this time. He said he want another ct scan, being done tomorrow, to have a baseline and then watch it. He said he doesn't want to wait until it gets as big as the left one was before they do surgery on that. I am now very discouraged and getting depressed. I'm sure this is normal living with this awful disease. My breathing is worse than before the surgery, and still in a great deal of pain. I think alot of the pain is from the ribs that they split to get to the lung, not sure. I meet with the surgeon Aug 1 and hope he will have more answers as far as when I'll start feeling normal. I guess my plan of moving back to Tucson isn't a reality anymore, as the doctors said it would most likely get worse for me? I just want to feel well enough to live on my own again and get a job. Anybody that has had this surgery, How long does it take to recover, I feel so useless now, I'm only 47 and feel like 77. I did quit smoking though. It's been almost a month. I wear the patch. Funny thing is my biggest fear of quitting was afraid i'd gain weight. I've lost 29 pounds since the surgery!! Thanks for listening, and i still look at this sight often for answers.
Tony in Maine, (guess i should change my name from Tucsontony to the maniac from Maine!!! :
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claudia c



Joined: 27 Jun 2007
Posts: 478
Location: seattle washington

PostPosted: Thu Jul 10, 2008 8:47 am    Post subject: Reply with quote

Hi Tony. Please be patient with your progress. My surgeon told me it takes up to a year for healing to take place with a thoracotomy. As you know it is one of the most painful surgeries a person can have. My doctors told me that and maybe yours did too. It is possible that small nodules can be treated by staying on medication. It has something to do with the blood supply I believe. I guess the larger the cavity and all the problems that go along with them..the fungal medicine cannot be effective. The tissue is necrotic. I feel 77 some days too but the surgical pain is much much better. It is easy to get depressed with a chronic and long term illness but you can't give in. I wish there were more support groups around. I come back to this website a lot because I get feedback from others that know what it is like to have VF. Demand the best from your health care providers. It is important you have confidence in them. Rest Tony and be good to yourself. You literally have to take one day at a time. Best wishes. Claudia
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Nana



Joined: 26 Sep 2006
Posts: 131
Location: Michigan

PostPosted: Thu Jul 10, 2008 2:00 pm    Post subject: Reply with quote

Hi Tony,
Yes, be patient. After my lobectomy (two yrs ago) I still was in pain even after 2-3 months. It WILL get better, I promise!! I still have a little tenderness in the rib area when I sneeze, but it passes in a second or two. Just remember to let yourself heal and rest, rest and rest! Don't push it.
It's only been a month since your surgery so pain, especially in the rib area, should be expected.

Let's see...Tony's now in Maine, Claudia's in Washington and I'm in Michigan. The effect of this disease is far reaching, isn't it?
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