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UP JUMPED THE DEVIL!

 
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Tue Mar 19, 2013 1:41 pm    Post subject: UP JUMPED THE DEVIL! Reply with quote

As Jack Nicholson said in The Shining....I'M BAAAACK!

I tested <1:2 for 6 months, and negative in February. I had my fluconazole reduced from 400mg to 200mg a day on 2/20. But by 3/ll (only 20 days later) my titers rose to 1:8 and a cough started again. I already had 1 lung lobe removed last September, and it sort of scares me. A chest XRay taken yesterday looks clear, but I'm still a bit spooked, especially because of coughing. Needless to say, I'm back to 400mg. The doctor doesn't want to go higher because of Liver.

I'll do what I have to, even if it's lifelong. I want to be able to think about other things so that my husband won't be trapped by this along with me. So I plan to do what I can to keep a positive attitude, do normal things, and wear wigs forever if I have to. Worse things have happened to people. I'm grateful for what I have.
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 275

PostPosted: Fri Mar 22, 2013 12:17 pm    Post subject: Reply with quote

Hi Linda,

While it is disappointing to have to bring the dose back up, the fact that you could keep things in check at that dose is at least hopeful that, in the future, you may be able to reduce it. Along with the positive attitude, a focus on nutrition can work wonders for people who don't even have a problem like VF -- often I feel that is the missing link for people who DO have it.

But no matter what, the attitude makes everything possible. Hang in there.

Best of health,
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Fri Mar 22, 2013 12:40 pm    Post subject: Reply with quote

Thanks for your hopeful comments, Dave. I also realize that nutrition and rest come into play, and I'm on a much more healthy diet now, looking to lose 30 pounds in a sensible way. I am researching how I can make my liver feel better with the right foods too. Certainly I'm drinking MUCH more water than I used to.

But I have a question for the forum here. Since my hair is thinning, I've been taking collagen and primrose oil tablets/capsules daily in addition to D3, Calcium, thyroid, and fluconazole. It occurs to me that since my liver shows elevation that maybe I shouldn't be taking all these "extras". I also don't know whether things like collagen and primrose oil COUNTER some of the effects of the fluconazole.....and does it compete with the absorption of fluconazole to be taking a bunch of other pills with it at the same time. This is new ground for me. Does anyone know? I'd appreciate any advice you may have.
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jzirzow



Joined: 28 Apr 2013
Posts: 25
Location: scottsdale, az

PostPosted: Sun Apr 28, 2013 12:34 pm    Post subject: hang in there Reply with quote

Linda
I hope things have been improving for you. I also had a partial lobectomy in oct 2013. The doctors stopped the meds post operative and it spread to the left lung within months. My titers have never been very high... I feel like my body just isn't reacting. I have an apt with dr. galgiano Tuesday and I hope for a better treatment plan.
It certainly is disappointing that you had to increase the meds again but hopefully this won't always be the case. I understand the fear of having it spread esp after lung surgery. There is such desperation just to be well again and get back to life. My thoughts are with you.
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Sun Apr 28, 2013 12:52 pm    Post subject: Reply with quote

Thank you so much for your good wishes. My ID doctor says I must be in the 2% that are VERY sensitive to the spores, and I breathe them every day living here. He said that almost all the people he's seen who have had a lobe removal come off drugs with no further problem. He said my quick Titer rise was "concerning", that it could be based in the abdomen and he wanted to see with a CT. Since I've had 4 CTs this year, I declined another right now. He said in 6 months then another CT, and that it could be in blood, lymph nodes, etc.

What confuses me is this. My pulmonary doctor last week said that since I have no outward "symptoms", that it may not be disseminated? I thought that if it was beyond my lung that was removed that INDICATES dissemination. Both doctors say it will be a year before we can ever think of reducing meds again and that I should be "in control" until then. I'm still 1:8.
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Sun Apr 28, 2013 12:54 pm    Post subject: Reply with quote

...and jzirzow, I wish you well. This road can be disappointing, but we are lucky that there are any drugs to keep us going. Let us know if your situation gets better.
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jzirzow



Joined: 28 Apr 2013
Posts: 25
Location: scottsdale, az

PostPosted: Sun Apr 28, 2013 1:14 pm    Post subject: Reply with quote

I'm not a doctor but have nursing background.... so I might be able to offer some thought on disseminated versus not. There are multiple types of dissemination. There is extra pulmonary or outside the lung and what I've heard referred to as progressive cocci or spread within the lungs.
Its interesting how titers vary so much with people. I sometimes wish they were higher because it would explain the symptoms. I think the skin lesions were overlooked previous because my levels just don't budge. I am happy to have diagnosis because I felt crazy before but the fear is always there. Every time the wind in as picks up I think about it. There are times I feel defective because my titers don't match my bodies response. I try to keep in mind everyone has there own unique battle with vf. Thanks for the well wishes and I continue to wish you well in return.
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