Anyone had Aspergillosis Pneumonia?

[traceyn11]

Just released from the hospital on Sunday after 11 days - they finally determined it was Aspergillosis Pneumonia after a Lumbar Puncture and Lung tissue biopsy. I am now on anti fungal, antibiotic and antiviral meds. Hopefully they will keep me out of the hospital for a while.

I know there were some posts by people who had fungal infections/pneumonia. Just wondering if anyone had Aspergillosis.

Tracey

[bailie]

Tracey,
This is what I had (straight from my report):

Infectious Disease: Afebrile; continues prophylactic acyclovir and bactrim along with PenVK for encapsulated organism prophylaxis and azithromycin TIweek due to concern for BOS. F/u CXR on 2/13/15 showed new LLL cavitary lesion, confirmed by CT and most c/w fungal infection. BAL 2/20/15, all cx show NGTD. Cryptococcal Ag, coccidioides Ab negative. Vori trough therapeutic. Underwent VATS wedge resection on 3/11/15; cultures positive for Rhizopus. Voriconazole changed to posaconazole. Repeat CT chest completed today showed evolving postoperative changes of LLL wedge resection and developing mild scarring in the RUL. No new pulmonary nodules or consolidation noted.

[traceyn11]

Hi Bailie - So your fungal infection was Rhizopus? Is it completely gone now? I am on Voriconazole right now. It really messes with vision right after I take it, but the effect goes away after awhile. I am worried because my neutrophils and wbc are so low right now and the dr. said it could take months for this to go away.

[Cheryl C]

Hi Tracey - You're having a real battle, aren't you. I wonder if you can supplement your conventional treatment with natural herbal remedies which might also help you and your immune system to recover. I did a quick Google search for natural remedies for lung infections and the same ones appear over and over again so you might want to investigate.

Whatever you do, keep away from concentrated sugars (apart from fruit). It's very bad for your immune system.

Praying for you and all those who are battling marrow diseases on this forum.

[bailie]

Tracey, There are about 25 known fungal infections. I was on voriconazole and it wasn't working so I told the doctors that my problem was most likely one of the two types (out of 25) that the voriconazole did not work.. I was correct. The problem is those two are almost always deadly within 2-3 months. They caught mine very early and it was in a capsule about the size of a golf ball with a cover all around it like the outer layer of a golf ball. They then switched me to the posaconazole which is the elite drug in the class.

I had vision distortions with the voriconazole, also. The first month I had a little problem in that some things would look yellow and some things took on different colors. It was interesting and didn't cause problems.

I didn't have problems with blood counts while on the voriconazole.

I wish you the best !!

[traceyn11]

Hi Cheryl,
Thanks for the info, I will do a search and see what I come up with. Yes, I am having a real battle! It's just one infection after another, no matter how careful I am. Thankfully, I actually feel better now than I have in 2 months, so that is giving me hope that I am finally on the right track. Now I just need to gain back the weight I have lost.

[traceyn11]

Hi Bailie - Wow, glad they caught that early. These fungal infections are scary because they are life threatening. I ended up going to the ER because I had pain in my rib cage where it hurt to breathe or talk. Those symptoms are pretty much gone now. I never had a fever or cough.

How did you know the voriconazole wasn't working? Were you still having symptoms?

[Marlene]

Make sure that if you are near any outdoor construction areas that you wear a mask. And digging in the dirt, raking leaves, etc are not a good idea. That was the advice we got from Hopkins when John was ill. He too had a fungal lung infection. Scary stuff.

Right now the mold counts in our area are really high. I have many different types fungus growing on the mulch beds and in the grass this year. Bizarre looking mushroom.

[italianburrito]

Originally Posted by traceyn11

Just released from the hospital on Sunday after 11 days - they finally determined it was Aspergillosis Pneumonia after a Lumbar Puncture and Lung tissue biopsy. I am now on anti fungal, antibiotic and antiviral meds. Hopefully they will keep me out of the hospital for a while.

I know there were some posts by people who had fungal infections/pneumonia. Just wondering if anyone had Aspergillosis.

Tracey

I haven't heard from you in awhile so I am happy to see a post from you! That's awful you have this pneumonia! My dad has not had pneumonia but he is dealing with other issues as well. He had a severe reaction to blood he received and he was in the ICU for 2 days. I hate to hear you are going through all these infections but SO HAPPY they finally have you on those 3 medications (anti-viral-fungal-biotic). Since your white count has been low, now you have some back-up with these meds!! I hope for a speedy recovery and don't forget to exercise! Even just a short walk will really help. Talk soon!

[traceyn11]

Originally Posted by Marlene

Make sure that if you are near any outdoor construction areas that you wear a mask. And digging in the dirt, raking leaves, etc are not a good idea. That was the advice we got from Hopkins when John was ill. He too had a fungal lung infection. Scary stuff.

Right now the mold counts in our area are really high. I have many different types fungus growing on the mulch beds and in the grass this year. Bizarre looking mushroom.

Hi Marlene,
Yeah, I haven't even been watering the very few indoor plants we have and wearing a mask when I take walks outside. I forgot I could check the mold counts - thanks for the reminder.

[traceyn11]

Originally Posted by italianburrito

I haven't heard from you in awhile so I am happy to see a post from you! That's awful you have this pneumonia! My dad has not had pneumonia but he is dealing with other issues as well. He had a severe reaction to blood he received and he was in the ICU for 2 days. I hate to hear you are going through all these infections but SO HAPPY they finally have you on those 3 medications (anti-viral-fungal-biotic). Since your white count has been low, now you have some back-up with these meds!! I hope for a speedy recovery and don't forget to exercise! Even just a short walk will really help. Talk soon!

Hi Italian Burrito - I have been thinking about you and your dad and wondering how he was doing. I am so sorry he had a severe reaction to the blood he got in ICU. I hope he is recovering from that. I know the one time I had to get a transfusion, they told me they had to irradiate it. I didn't have any reaction and actually didn't realize you could have a reaction to it. Yikes! Glad to hear from you and hope your dad is doing better.

[bailie]

Tracey, I knew the voriconazole was not working because the chest x-rays kept showing something was not right in my lungs. I had a dry cough that wasn't bothersome, but it wasn't right and not getting better. Voriconazole should have taken care of that and it didn't. I decided that it had to be something different than the "standard" fungal infection. My symptoms were never too bad. I did know that I would be in real trouble by the time symptoms started showing so we switched to the posaconazole and had the surgery. I think we solved the problem.

[Cheryl C]

Hi Tracey - not sure if I've mentioned this to you previously, but I was advised by a very experienced Chinese haematologist a few years ago now to take 1000mg Echinacea every day as an immune system booster. He advised me not to use Chinese medicine as it's too likely to be contaminated.

I don't do this now because I'm going well, but as soon as I feel any sort of chest/throat infection threatening I take 5000 mg Echinacea and another dose maybe 12 hours later, and 99% of the time this knocks it.

This is apart from what you will see when you search for lung infection remedies.

[traceyn11]

Thanks Cheryl. I used to take Echinacea years ago when I felt a cold coming on. I am going to check with my dr. on Friday about it.