New member caregiver sofia

[Charlene Marshall]

Hi Sofia,

Thanks for joining the PF forums and welcome again! I don’t know if we have anyone else here from Athens, but several members from all over the world and it can be nice to feel so connected with others who truly understand the difficulties of this illness. Have they confirmed it was a misdiagnosis, or have they said for certain if it is IPF or HP? ARDS can be very scary, does she continue to have follow up care for her pulmonary conditions? Keep us posted on how she’s doing and feel free to write anytime.
Charlene.

[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…

 

 

[Charlene Marshall]

Hi Sofia,

Thanks so much for sharing a bit more of your Mom’s story with us. Sorry it sounds like such an acute onset of a lung injury occurred following an infection from her knee surgery. That must be so tough to accept!

There is a really close relationship between HP and IPF, though I think some significant differences in physiology so is there any opportunity to seek out a 3rd opinion, to see which one it might be? Oh I read that the third doctor identified fibrosis but maybe secondary to something from the surgery? That could be too, I suppose – you must be so conflicted. Does your Mom feel any better on the Cellcept at all?

I wonder if it would be worth it to contact a centre of excellence in respiratory health in the US to see if you could speak with someone there. Thoughts?

Keep in touch and let me know how you make out.
Charlene.

[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

[Charlene Marshall]

Hi Sofia,

Thanks so much for writing and for your patience with my reply  – I am just at the airport returning home from San Antonio Texas, where I was so lucky to attend the PFF Summit with hundreds of other patients, caregivers, physicians and researchers. While this disease is so cruel, and I wish none of us were ever effected: I can assure you after attending this Summit that many are “in our corner” and dedicated to eliminating this disease forever!

I had missed your message of it being your third physician visit, sorry to hear that they all conclude the cause of dyspnea to be fibrotic lung disease related. One thing I did take away from the Summit is the importance of addressing underlying conditions, such as OSA (obstructive sleep apnea) and GERD/acid reflux. Those things are both very manageable if addressed, so I think a sleep study is a good idea. Are you able to get into doctors specializing in these things as soon as possible?

Cellcept is a good drug and has been known to help a lot of people with fibrotic lung disease. How are you tolerating it?

Check out the pulmonary fibrosis foundation website: http://www.pulmonaryfibrosis.org where you should be able to see centres of excellence and connect with them 🙂

Hope this helps. Hang in there and feel free to write anytime!
Charlene.

[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?

[Charlene Marshall]

Hi Sofia,

Thanks so much for your reply and sorry for my delay in getting back to you. Texas and the PFF Summit was wonderful but I’ve been under the weather since returning.

Sorry to hear of the distance barrier you seem to be facing between you and different centres of excellence. I didn’t know that about Mayo. In terms  of other centres, I’m not sure how to go about booking an appointment with them via skype, as they will likely want to do to an in-person assessment I’d guess. That said, perhaps they’d schedule a conference call or something with you to see if they could help? Centre of Excellence sites can be found on the PF foundation’s website: http://www.pulmonaryfibrosisfoundation.org. I am not too familiar with sites as I don’t live in the US either.

Has there still not been an agreement on the Ofev or Esbriet? Is the sleep and adjustment of other medications helping at all?

Thinking of you.
Charlene.