My Weg husband has new lung illness

[Aunnie]

Victoria,

You are being so brave and so is your husband.Its all so scary. It seems like you are in goods hands and have lots of support,which is always very helpful.

my prayers tonite wil be for you and yours.and the rest of us weggies.

Fondly,

Aunnie

[DEE]

Victoria
please take care f you .You are both in my thoughts hope things get better soon DEEx

[Victoria]

Fellow friends, we are still in ICU. Vitals are better. Going back to oral solution itraconazole and hope it will be tolerated. No more amphotericin IV, his poor body is swollen and infected every location of sticks. Had to remove his PICC line, it showed infection in blood culture. So we have officially been here a week, with no food except of course IV solutions, edema has caused him to gain 20 pounds! Please continue him in your thoughts and prayers. Victoria

[Sangye]

Thank you for letting us know, Victoria. Hopefully just getting that infected PICC line out will help his body get over the hump so he can fight off all the infections. Lots of hugs to both of you.

[Jack]

My thoughts and best wishes go out to you.

[DEE]

Victoria thinking of you both x

[elephant]

Thinking of you both too!

[drz]

How many people here take a prophalactic treatment to try prevent getting a fungal infection. They told me these fungi are in every ones lungs but don't bother us when we are healthy because our body can fight it off or keep it under control. Now that I have Wegener's they have me taking some meds evey day to prevent fungus infection plus getting a nebulizer treatment every four weeks.

I thought I posted this before but can't find the post now so will repeat it here:

Primary prophylaxis of severely immunocompromised patients can be indicated where PCP has not yet been diagnosed. Secondary prophylaxis aims to prevent recurrent infections by PCP. For both forms of prophylaxis, an aerosolized formulation of pentamidine given by nebulizer once monthly in a dose of 300 mg is used. In primary prophylaxis, this reduces the long term likelihood of PCP by 70% when compared to no prophylaxis.

There is is a lot more info under links listed under pentamidine in Wikipedia:

[Sangye]

I've never heard of doing that with Wegs. It's not even been on the "maybe someday we might have to do this just in case but don't worry about it now" list.

[Victoria]

Thank you fellow friends for all concern, especially to drz for the reply on his prophalactic treatment concerning lung fungus. Let me tell you if there is a way for you Weg friends to escape this you might consult with your physicians. It is brutal and leads to so much more to deal with. We were told this morning the blood culture finally determined the end of his PICC line grew E-Coli and the antibiotic they were giving was resistant to this, so changed to another. Hopefully get a grip on this thing. He is back on the liquid solution of itraconazole, already nausea has set in. So hope he can retain this drug. Don't know what if this don't work. They are calling PT in to try and help with strength and mobility. One day at a time, all of you take care. Victoria