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anniehall56



Joined: 31 Oct 2011
Posts: 3
Location: Los Angeles

PostPosted: Mon Oct 31, 2011 4:53 pm    Post subject: Relapse? Reply with quote

I am new to the board and I am seeking answers for my husband. This first post is a bit long but I wanted to give you the background of my husband's bout of Valley Fever. It almost killed him.

My husband almost died last year from Valley Fever. He is a physician who practices in Burbank and we live in Woodland Hills. He was admitted one year ago today to his own hospital where he is on staff with a diagnosis of pneumonia. He quickly went from bad to worse after having every test performed, only to have all the tests come back negative. He was intubated with a high fever and his lungs continued to get worse. The doctors assumed he had some kind of COP (organizing pneumonia) and began him on steroids. His lungs improved and he was off the respirator but his fevers kept shooting up. By the time I insisted he go to UCLA, he could barely walk or breathe.

After a bronchoscopy, the fluid turned up to be positive for cocci and he was put on amphotercine B among other things. He was intubated and continued to get worse. After three weeks on a respirator, he was trached and sedated, I was told to prepare myself that he might not make it, and then a new pulmonary doctor came on rotation who specialized in research. I asked him why my husband's lungs improved while on steroids which sparked the doc to do some research. He came back the next day saying he found a study conducted of eight patients who had an allergic reaction to cocci which caused eosinophilic pneumonia and only steroids combined with antifungals might help. After some very hesitant doctors finally agreed to try this (concerned it could kill him because there were only eight people who had this - six of who had died) he was treated with both steroids and antifungals and was out of ICU within two weeks, and into rehab within three. Luckily, all of the tests for dissemination were clear.

He lost 45 pounds and could not stand on his own, needed a walker to walk, and went through many weeks of physical therapy. He went back to work full time in April and has been fine until this past week.

He felt a pain in his chest this past Thursday and went to have a chest x-ray and ultrasound which found that he has a pleural effusion - a total of 6 oz. of water in the area between the lungs. He has repeated his titers - which won't be back until tomorrow, but every six weeks or so, the titers are tested and have remained at 1:4 (it was 1:16 at his worse). He has been on antifungals since the diagnosis last year, and pozoconazole for the past six months. (He was switched to this drug after having such severe reactions to fluconazole like joint pain, itching, and extreme hair loss).

I have used this site as a resource for all of my questions and now am hoping that some of you can tell me what the symptoms are for relapse. It's so sad to think that my own husband as a physician has such a network of resources but so few who understand Valley Fever. He has no symptoms and is convinced this is not a recurrence but I am scared to death. He is waiting to get the titers back tomorrow but his ID doc at UCLA says it's unlikely to have a relapse while on antifungals. Do any of you have experience with this?

I appreciate any answers or help you can offer. Thank you
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kat



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

PostPosted: Mon Oct 31, 2011 6:45 pm    Post subject: Reply with quote

I am so sorry to hear all that your husband and you have gone through because of VF. My brother, Max, died from his battle with VF. He was given steroids during his first weeks in the hospital. When they finally discovered he had cocci meningitis he was put on 1200 mg. of Diflucan a day. He went to a rehab hospital for 6 weeks and was improving. He was walking with a walker and sent home with in home physical therapy. Then he relapsed. Back in the hospital and he had masses of cocci growing on his adrenal glands. He was near death so we brought him home at his request. He died two days later. You can read his story in the Personal Stories Forum under Max's Story. You have to go quite a ways back to find it.

I hope your husband has not relapsed. But if he has, you need to know so that you can fight it with everything available. It could be that it had disseminated before his titers went down. Joint pain is a very common side effect of VF itself when disseminated. When the anti-fungals start to take affect, the pain can subside. I don't mean to worry you more than you already are, but it is important to know of the possibilities. Praying for your husband's full recovery and that VF has not returned.
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God Bless you and keep you,
Kathy
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claudia c



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

PostPosted: Thu Nov 03, 2011 12:08 am    Post subject: Reply with quote

Thank you for sharing your story us. There is always that thought of a possible relapse and it is pretty frightening. I hope that isn't the case with your husband. Even though there is so much unknown about VF it does seem like your husband does have access to very qualified doctors. I started to fail on fluconazole a few years ago and have been on posaconazole since 2008. Although it couldn't reverse the damage that had been done by the failure of the fluconazole, it has kept me well since the rest of my lung was removed in 2010. I have fewer side effects with the posaconazole like your husband. The question of relapse seems to be part of the mystery. Also the question of how long to take anti-fungals remains. I hope your husband's lab comes back and it is good news. My best wishes go out to both of you, Claudia
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Holly.AZRN



Joined: 25 Jan 2012
Posts: 3
Location: Tucson AZ

PostPosted: Sun Sep 29, 2013 9:09 am    Post subject: Relapse Reply with quote

I would love to know the outcome of the situation described concerning anniehall56's husband.

While I did not have a very serious case of VF, it was rather debilitating and recovery was longer than a year. I am now experiencing again the same flu-like symptoms, joint and muscle pain and headaches, weakness, fatigue and malaise, as I did with the VF. In my first bout with it, the flu-like symptoms came and then some months later a persistent dry cough appeared that didn't resolve for many months when CTs eventually showed the lesions in my lungs decreasing in size.

It was many more months before I could resume my active lifestyle and normal strength and stamina approached normal.

I'm wondering if others have had a similar experience and how it played out.

Thanks for any info.

~Holly
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 275

PostPosted: Thu Oct 03, 2013 11:17 am    Post subject: Reply with quote

While posters using the board at this time may not have responded with that I can respond with much of what I had heard from others on VF cases. They can run the gamut from unnoticed to permanently devastating but many have similar circumstances to what you describe.

I'm glad things have improved for you.

All my best,
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David Filip
Co-Founder of www.valleyfeversurvivor.com
Co-Author of "Valley Fever Epidemic"
www.valleyfeverepidemic.com
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anniehall56



Joined: 31 Oct 2011
Posts: 3
Location: Los Angeles

PostPosted: Sat Oct 05, 2013 9:17 am    Post subject: Husband now has disseminated cocci to skin Reply with quote

I wanted to update my husband's condition. My husband took a position in NY for one year at a teaching hospital. Had been off the meds for a while and titers were 0. We thought we were out of the woods. No symptoms, feeling great. After the year was up we missed California and husband was hired at UCLA and is now on faculty there. He had his titers done in Feb. 2013 and they were at 1:2. Dr. Pappagianis at Davis lab follows my husband's titers and was not concerned. Two months later, my husband developed a sore on his middle finger. He was not concerned until it continued to ulcerate and never quite heal. He went in for titers 10 days ago and they were at 4+ at 1:8. Shocked to say the least. He also decided to biopsy the lesion and it just came back as positive for cocci.

I'm trying to stay calm as my husband now has disseminated cocci. He has no symptoms at all other than the high titers and lesion on the finger. He called Dr. Royce Johnson in Bakersfield who put him back on Posaconazole for three years and he wants to see my husband (a two hour drive from LA but feel it's worth it since he's one of the experts).

Not sure whether or not to panic. My husband says he's going to be fine since he caught it but I'm worried that it could be somewhere else in his body. Will wait to hear the recommendations from Dr. Johnson but hoping that he's going to get through this one.

Your thoughts are appreciated.
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 275

PostPosted: Sat Oct 05, 2013 11:04 am    Post subject: Reply with quote

Hi Annie,

Although it's not good that your husband is dealing with any symptoms, this is definitely not a time to panic. By the fact that his symptoms were so limited and the fact that he is being treated by Dr. Johnson, protegee of the late Dr. Hans Einstein, and the fact that posaconazole rarely has side effects, this is just a time to watch and wait.

If there is no specific discomfort or problem, there is no reason to panic. If there IS a problem or discomfort, it should be noted for how long it lasts, how often it happens, and when it specifically happens so this information can be reviewed medically. Write it down with the dates and times and keep it with medical records so you can be sure to find it and bring it with you for the next medical visit or phone call. Then if it is found to be a VF complication, a medicinal side effect, or something unrelated, a clear course of action could be taken. It's just a matter of keeping track at this point.

Just make sure he doesn't forget to enjoy the times when nothing is wrong too. Sometimes it is possible to get wrapped up in the process of dealing with illness and not notice when things are going well.

All my best,
_________________
David Filip
Co-Founder of www.valleyfeversurvivor.com
Co-Author of "Valley Fever Epidemic"
www.valleyfeverepidemic.com
Join us on Facebook: www.facebook.com/valleyfeversurvivor
View our You Tube channel: www.youtube.com/valleyfeversurvivor
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