[Sofia]

@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 [email protected].

thanks in advance.

[Sofia]

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 you aware for any center of excellence which accepts appointment via skype or mail after sending them the whole medical file?

[Sofia]

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 everything starts from there. he wants to take a sleep study and maybe wear a mask during night and also give a med for acid reflux”

 

this is my THIRD diagnosis…..

 

so now, I give up on cellcept and try the third approach… Continuing steroids and CPAP machine. my mom is in the same condition..

 

If you or anybody else on this forum (if you have the kindness to share my post since I have no idea how to do it) can speak with his pulmonologist or someone in a center of excellence in order to send the HRCTs, blood test and the history, PLEASE, please feel free to let me know.

 

Thanks again,

regards xxxxx

[Sofia]

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 steroids (still on steroids) she is on O2  24/7.

as I said before, one pulmonologist said it is IPF, a second one said hypersensitivity pneumonotis.

the second one put her on cellcept (500mg *2/day) and wants to increase it to *4/day because he believes it is some autoimmune disease (maybe hypersensitivity pneumonitis) because her HRCT is not the model of IPF. this is the reason he won’t put her on esbriet or ovef.

the first one disagree and says  not to take cellcept because afraid of possible infections because of high immunosuppression…

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 everything starts from there. he wants to take a sleep study and maybe wear a mask during night and also give a med for acid reflux.

none of them takes the responsibility for bronch or biopsy because of the severe ards.

that really freaks me out is that in only 1.5 month her pft tests (dlco & fcv) are worse !

 

please feel free for any help as i m going crazy and don’t know how to help her. such a dramatic change in only 2 months…

 

 

[Sofia]

Maybe schlerodemma?

[Sofia]

@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 going crazy.. can you please help me?

[Sofia]

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?

[Sofia]

Cynthia, thanks for your prompt reply.

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

 

[Sofia]

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 disagree (IPF or other ILD).

waiting for an appointment on a third pulmonologist next couple days.

While she is still on cellcept and steroids which they are immunosuppressants does make sense to do flu shot?