My Weg husband has new lung illness

[Sangye]

What a relief that they found the right antibiotic. I'm so sorry he's suffering like this. It's not at all common and that's why it isn't part of the usual prophylaxis. With Wegs they can't treat for all potential problems or we'd all be on every drug they make. Hang in there--

[kmcgee21]

Dear Victoria,
My husband and I are at Baptist Hospital in Nashville as I type this. He has been here since Tues. Drs originally thought it was a WG flare but have since concluded that it was a build up of the cytoxin to toxic levels and completely wiped his immune system out. Going to start Rituxan Monday. We are so blessed that it was not much worse. You and your husband will be in our prayers. My replys have to be fairly quick or the hospital's server will kick me off. If you want to send me a private message feel free to. I am new to this forum so I still dont know how to do all this stuff. How old are your children? We have two little girls we are missing like crazy!!

[Sangye]

Oh no, Kelley. Thank you for letting us know WGrebel is in trouble. I urge you to get in touch with a VF doc to consult with your husband's docs at Baptist. They should have caught his blood counts trending too low and stopped it long before this happened.

I hope rtx goes well for him. It's helped me tremendously-- there's hope. Please give him my best.

[LisaMarie]

victoria my prayers r with u and your husband...when i return home i will pull some resources and see what i can find out...if my foggy brain is working right fungal lung is best treated with aerosol and po or iv med but the aerosol when done correctly is the most effectived.:...hope all is well with u othetwise send a big hug your way please do not hesitate if u need anything

[kmcgee21]

Thank you Sangye!! He is doing very well right now. We are in the hospital in Nashville where his VF recommended WG specialist is located. We have cut ties with the rheumy that wanted to keep him on cytoxin for two years and are going to see the dr in Nashville once a month. We saw him on June 7 and his CRP (which we were told was a better indicator of active WG than the SED rate, which was up bc of the shingles) was normal and his other blood work looked ok. We went on a 12 day whirl wind vacation from June 12 - june 21 and he started going downhill during this trip and afterwards. We wnt back to the specialist on Friday 7/9 but they did not do any bloodwork since we had just been there on 6/7 and would be coming back on 8/2 and he was feeling ok that day. The following morning he woke up and it was like someone had pulled a rug from under him. He could not get out of bed, so very weak. He collapsed in the bathroom floor and I called an ambulance. The bloodwork at our local ER showed his WBC to be .6 and RBC was low too. They sent us home with instructions to followup with his specialist on Monday. His specialist was appalled that they sent him home with no antibiotics. We have been blessed that he didnt come down with something really big during this time. Monday the specialist told me to bring him in the next day so here we are. His CRP is back down to normal and his WBC is back up to 4.6 and he is starting to feel better. He has a mouth filled with ulcers (drs assume it is from the extremely low WBC) and has not been able to eat much until today. Planning to do the Rituxan inf on monday and if all goes well probably go home tues. Kelley

[drz]

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

I can't remember all the details of my initial treatment after diagnosis as I was intubated and unconscious during much of it all with numerous trips to ICU Unit but do remember both my PICC and plaasmaparesis lines became infected and had to be replaced. I was also treated for some other infections such as MSREA ? and VRE and some lung infection which complicated my treatment.

[Nancy]

Vixtoria -
Read about all the troubles and pain that you have both been going through. Wish the best for you and your husband... It is difficult to want to help but be unable to determine the initial place to start. I am glad that he is off the Ampho B - terrible drug - but if needed not unlike cytoxan... whatever gives you another day or shot at a normalized life if possible. I know as a practitioner that the idea of treating a potential of a fungal infection would land the majority of us on the wrong side of the liver "OK" scale... even treating people with nail fungal infections that will not respond to topical creams is months in process with constant vigilence towards maintaining their liver profiles.... This is not a road that I think anybody thinks as treat for a maybe situation...
I wish the best for the resolution of his sepsis and now that all the invasive lines are out - probably using intermittent IV's due to the positive blood cultures.... The possible positive thing is most people do not remember their ICU experiences - just the general emotional responses/moods and the fact that the one they love was there... Please remember to get some rest/sleep for yourself as well... His recovery is yours as well...

[Sangye]

We are so fortunate to have you here, Nancy. You nurses and nurse practitioners bring so much experience to the group. And you always remember to look after the caretakers, too. Thank you.

[Sangye]

We have cut ties with the rheumy that wanted to keep him on cytoxin for two years and are going to see the dr in Nashville once a month.

Excellent decision. Things should improve from this point on!

[Victoria]

Kelly, so sorry for your husband's sickness. Ironic we are only a few miles away sitting in the hospital with sick spouses. My prayers are with you. Do you mind telling me who is treating your husband for WG? Where do you live? Our home is about 70 miles west of Nashville. How long has he had WG? Mine since 1985. We have 4 grown children and 12 grandkids, like you missing them. My thoughts are with you. Victoria