My Weg husband has new lung illness

[jola57]

Dear Victoria, please know that you are not alone in this ordeal. Your husband, you and your family are all n our thoughts.

[Victoria]

Fellow weg friends. Actually we are in Vanderbilt hospital again after just getting to go home for 1 week. My husband's condition deteriorated quick at home. Thank goodness we are back where he can be monitored. They have switched to IV amphiteracin for this lung fungus and it is cruel. Bad reaction last night. Just started it again with lots of pre-medication to try and help. On top of all this it was detected in last week's lung biopsy the spleen was looking suspicious, did a test called flow cytometry and it is highly probable he has a type of leukemia, called "hairy cell". What a blow. Plan now is try and get this fungus under control then deal with everything. He is scheduled to have bone marrow biopsy this coming Tuesday. Please keep him in your prayers.

[JanW]

You are in our prayers, Victoria.

[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.

[pberggren1]

What med are you taking to prevent fungal infections. What are they puting in the nebulizer?

[Jack]

I don't take any prophalactic for fungal infection, but I do get the odd minor one on my skin. It is usually just a discoloured patch so I don't usually bother to do anything about it. It does show that we are probably more at risk than most of a serious one developing.

[LisaMarie]

oh victoria ...my heart goes out to u and my prayers ....that drug is wicked....sorry to hear about the bone marrow will keep you in our prayer chain

[JanW]

I"m not taking anything to prevent fungal infections.

[elephant]

I'm not taking anything to prevent fungal infections. No doctor has mentioned it to me.

[Sangye]

Victoria, just wanted to say how sorry I am for everything your husband is going through. A quick Google of hairy cell leukemia sounds like they don't usually treat it-- very slow progression. I hope that's the case and that it doesn't become a major issue on top of everything else.

Drz, I've never heard of any anti-fungal meds being used prophylactically in Weggies. They tend to be quite harsh and I can't imagine a doc thinking it'd be good to be on them unless necessary. Bacteria, fungi and viruses all compete for space. If you wipe out one type of microorganism, it can create an opportunity for others to take over.