@shorebird

Thanks so much Robin – could you send me a copy of your report (or could someone else send it to me)?  My email address is sofakist@yahoo.gr.

thanks in advance.

Hi Charlene thank you for your reply.

 

I just received an answer from Mayo Clinic said that they only make appointment face to face.

meantime, we stopped the cellcept, make a sleep study, and sleep with a cpap mask from tonight. Also, she will take a medicine for acid reflux and serrapeptace. Noone agrees to take Ofev or Esbriet.

are… Read more

Dear Charlene, thank you for your care..

if you read closer to my above message

“as you understand with all that mess, I went to a third doctor who came up with a different third diagnosis. he said fibrosis probably from acid reflux and also probably “sleep apnea syndrom”. he thinks on the surgery 3 months ago there was an aspiration and… Read more

Hi, Charlene, thank you, very nice talking to all you people.

 

let me tell you the story..

 

on July 1 (where she was active, just shortness of breath) she had a surgery on her knee and after that she went through 2 chest infections the second one severe with dramatic low of sat. Now, after 2 months and after a lot of antiviotics and… Read more

Maybe schlerodemma?

@shorebird

 

dear Robin,

as we are from Greece, where there is no such thing as blood test for hypersensitivity pneumonitis, at least as far as I know, can you please please give me more info about your test ? Maybe if we ask specifically they could test it..

I am running through 2 pulmonologists one says IPF the other says HP. I am… Read more

So happy you are dealing great with your new treatment. Hope feeling even better and get off O2.

what about your skin problem on the hands? once I read it I realized my mom also has a problem with her hands. From elbows to palms she has inks from time to time and a thinner skin. was it the same with you?

Cynthia, thanks for your prompt reply.

since steroids and cellcept are immunosuppressants how you deal with possible infections ?

 

My mom, aged 72 diagnosed with IPF or  an autoimmune issue (mayby hypersensitivity pneumonitis).

not clear diagnosis because of sudden severe ards 2 months ago. we are from Greece.

 

she is on steroids (medrol) and cellcept (1000mg/day). her pft test are geting worse (she made 3 the last 3 months). I have an HRCT but 2 pulmonologists… Read more

Good evening to all of you warriors. I am Sofia, caregiver of my mom. We are from Athens, Greece. My mom is somehow misdiagnosed with Ipf or hypersensitivity pnevmonitis. 3 months ago she was fine, having a surgery on her knee. After that she went through severe chest infections resulted in ards. Now she is put on O2 24/7.  3l sitting 5l… Read more