Cryptococcus: I am a post liver... - Aspergillosis and...

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Cryptococcus

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I am a post liver transplant recipient. I got Cryptococcus in February. When oral meds didn't work, I did two months of amphotericin infusions and had VATS surgery to remove three of the eight nodules that were in my lung.

I am wondering if anyone else has had this and what is your story with it?

Thanks, Terri

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lafsalot profile image
lafsalot

Hi starla. I

lafsalot profile image
lafsalot

Hi TERRI. My name is Deena. I lived in an apartment for at least 3yrs that I know of now that had mold between the walls. The worst or highest mold spore count was for the aspergillius/penicillian. Last summer I had a sputum culture done and they were not able to grow the type of mold that they found in my lungs ,they did however successfully culture the fungus they found in my lungs. They also found a 5mm nodule in my right upper lobe. The fungus was cryptococcus, the kind you find in pigeon poop and at the bottom of Euycolypt's trees. Both of those are impossible for me. They are waiting for another sputum culture from me now so they can culture the mold. The voconizole(not sure how to spell it) did not work for me. The infectious disease from told me that some people just have to cohabitate with it in their lungs. Breathing is getting A LOT harder for me to get air in. Walking 20feet just kills me cause I cant breath, feels like someone is squeezing my lungs when I exhale and it's so hard to get air back into my lungs at that point.

in reply to lafsalot

That is a nasty fungus for sure. They killed it in me with IV medicine but I still have some of the inactive noduals. Breathing is hard, I get very winded when walking and trying to do anything.

lafsalot profile image
lafsalot in reply to

Wow thank you for letting me know that. Could you please tell me what IV medicine they used that killed it in you? Are you in the states?

in reply to lafsalot

yes in the states and the medicine was Amphotericin. It looks like yellow Gaterade but very toxic.

lafsalot profile image
lafsalot

Hi Terri, Deena here. I was wondering if you could please tell me the type of cryptococcus they treated in you. I'm in Sacramento and the doctors are lacking the knowledge here on how to treat me. Thank you

GAtherton profile image
GAthertonAdministratorFungal Infection Trust

This infection is treatable using several different systemic antifungal drugs, and usually responds well - see life-worldwide.org/fungal-d...

These infections mostly (but not always) attack people with reduced immunity, and is usually caught by inhaling the spores. The spores are found in soil in many parts of the world eg Pacific Northwest region of the United States, British Columbia in Canada, Southeast Asia, and Australia

in reply to GAtherton

Yes, i am aware of all that. I had two months of amphoterrible infusions and then surgery.

lafsalot profile image
lafsalot

Terri. I was wondering if you could tell me what the nodules in your lungs were. I have 1 in my right upper lobe and they dont seem too concerned??.. thank you

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