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In need of some advice....

 
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gotfever



Joined: 28 Apr 2013
Posts: 16
Location: Tucson, AZ

PostPosted: Sun Apr 28, 2013 5:52 pm    Post subject: In need of some advice.... Reply with quote

I just signed up to this great forum today and I am trying to figure out how to navigate through all my symptoms and what tests to ask for. I currently live in Tucson, Arizona and for the past 3 or 4 weeks I have been feeling not very well.

It started with my left side hurting and having a harder time breathing and so I went to a chiropractor and he said I had a couple of ribs out. Then, I came down once with a 103 degree temperature followed by red itchy bumps all over my back, stomach and pelvic area. I thought I had the chickenpocks. A Dr. gave me a steroid shot followed by 3 days of prednisone. My red spots went away. Then the pain on my left side came back and then I decided I needed to go see a Dr. He called for a chest x-ray and blood test for valley fever.

The x-ray came back with a mass on it about 1" and I am waiting for the results of the blood test. I then had a ct scan of the lungs and am waiting for the results of that.

I believe I have valley fever since I have all the symptoms but I am currently at a loss of what to ask for and what to do. The Dr. said I could have an infection in the lung so he started me on some antibiotics, or I could have valley fever or I could have a tumor.

Can anyone give me some good advice on what I should be doing right now. I am feeling ok right now but that can all change in a matter of minutes.

Thanks, Heidi[/b]
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jzirzow



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

PostPosted: Sun Apr 28, 2013 7:34 pm    Post subject: Reply with quote

Hi Heidi,
I am sorry to hear about your struggles. I am a nurse and have been suffering with valley fever since 2009. Your symptoms could be valley fever but until test results come back it is guard to speculate. If and when that time comes, find the best infect disease Dr you can. Dr. Galgiano is an expert and is in Tucson. He is also in phoenix on Tuesdays. I haven't met him yet but have an apt this Tuesday. I had my lung surgery out of state and just returned to Arizona. I think you are already doing everything you can you are seeking support and education. It is important to stay informed. When you get the diagnoses you can take the next step. Most importantly give yourself time to take it all in and feel whatever it is you do. In the mean time, try not to read the worse case senerios.... its hard but try to stay positive. I am sorry for your struggles as not knowing is the hardest thing.
Jenn
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LindaA



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

PostPosted: Mon Apr 29, 2013 5:03 am    Post subject: Reply with quote

Hello Heidi,

It's an awful time between seeing an Xray mass and getting those blood test results! You have had a few symptoms, and at least are suspecting VF. You will soon know.

If so, your case may be so different from mine that anything I say here could be wrong where you're concerned. But I will share some thoughts I had while reading your post. First, I also had a STEROID injection (for heel pain) followed by steroid pills for about a week. Within a few weeks, a mass similar to yours appeared in my lung. I have since learned on this site that steroids can contribute to risk factors, although they may still be essential for some people due to swelling. Your progression post- steroids to a lung mass is alot like mine. Secondly, if you get the blood work and CT pointing to VF, your doctor may still want to ensure that there is NO OTHER problem with the mass. He may want a biopsy confirmation along with the bloodwork confirmation. I actually was sent for TWO biopsies within 2 months because diflucan wasn't working very well. These were done, in my opinion, to keep reassuring my doctor that I didn't have cancer too. Let me just say this... I know that if you have lung cancer that time is of the essence, but I had already had actual blood test results saying that I had a high titer case of VF. I wish now that I'd have just proceeded directly to fluconazole treatment and given it a chance to work without all the biopsies. Why? Because you could clearly see post-biopsy cloudiness and spread of the once-contained mass in CTs. It is my belief that had I trusted the blood work and rejected the biopsies, I would still have my lung lobe and a better chance for non-dissemination. Granted though, these aren't easy decisions when you're scared.

I hope that you will have the best results on your tests, and that my experiences may be of some value.

Linda
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gotfever



Joined: 28 Apr 2013
Posts: 16
Location: Tucson, AZ

PostPosted: Mon Apr 29, 2013 9:07 am    Post subject: Thanks Reply with quote

Thank you to all of you who responded to my post. Information is so helpful. It amazes me how many mistakes are made in medicine. It is like we are all guinea pigs. Thanks, Heidi
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gotfever



Joined: 28 Apr 2013
Posts: 16
Location: Tucson, AZ

PostPosted: Mon Apr 29, 2013 9:20 am    Post subject: Reply with quote

Hi Linda:


Thank you Linda for your very thorough response. I really appreciate it. It is so hard to figure out what to do when you are in the midst of this. I do not trust the medical profession at all. I would like to have an opportunity to talk to you on the phone. Is that possible. I will also give you my e-mail:
[email removed]

Thanks, Heidi
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 275

PostPosted: Tue Apr 30, 2013 6:18 am    Post subject: Reply with quote

Hello Heidi,

I understand that personal support can be a great asset. However for safety reasons we simply can't allow personal email addresses to be publicly released on the board.

This thread in the announcements section details the unfortunate reasons why:

http://valleyfeversurvivor.com/vfsmb/viewtopic.php?t=1054&sid=0179f7df76fa8ec4fbd0d07befb9098b

The only way we would allow email address sharing is if both interested parties email us at voiceforaction@valleyfeversurvivor.com with the specific request to share an email addresses with that other specific board member, and then we could pass the message along to each board member.

I understand this is an inconvenience but safety on the message board is a priority.

All my best,
_________________
David Filip
Co-Founder of www.valleyfeversurvivor.com
Co-Author of "Valley Fever Epidemic"
www.valleyfeverepidemic.com
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kat



Joined: 30 Dec 2004
Posts: 912
Location: Creswell, Or

PostPosted: Sat May 04, 2013 5:03 pm    Post subject: Reply with quote

Heidi,
I strongly recommend the book Valley Fever Epicemic. It can answer so many of your questions. It can also give you knowledge that you will not find anywhere else. You will be able to ask questions of your doctors that you might not know to ask.
Let us know how you are doing and how your doctor visits go. Praying for you.
_________________
God Bless you and keep you,
Kathy
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