A condition with no clear diagnostic criteria – Idiopathic

[Marianne]

What doesn’t sit well with you?  Your disease diagnosed as idiopathic?  Hope you are soon feeling better and get some answers at the lung doctor Friday.  I have an ILD but they don’t know which one.  I really doubt I will ever know the cause of my ILD.  I have been doctoring since Sept 2018.  So far testing has ruled out some things.  I am having a VATS surgical biopsy on Friday to get a specific diagnosis.  Doctors are leaning towards either IPF or NSIP.  So far only have chronic dry cough, sometimes fatigue.  No medicine or oxygen so that is good.  Keep us posted.

[Charlene Marshall]

Hi Timothy,

Thanks for writing and starting this topic, although so sorry to hear you too have been plagued with fatigue! I am seeing my lung specialist this Friday as well (I’ll be thinking of you!) about this exact problem. I’ve always been tired since my IPF diagnosis in 2016, but its different lately and accompanied by dizziness unfortunately. Do you experience this? I know it may “all be part of having a lung disease” but in my heart, something feels different than before. Like you, I never lay down and I can barely make it through the day anymore without napping. I’ve been monitoring everything like crazy – my water intake, foods, o2 levels, etc. and can’t seem to make any connections. I’m hoping you get some answers on Friday!

Unfortunately, many diagnosis’ of PF are idiopathic meaning they dont know the cause. It doesn’t sit well, and I was investigated thoroughly for a cause since I was diagnosed at 28. It isn’t genetic (to our knowledge), no family history, no known exposures to anything toxic for the lungs. I had to let go of searching for an naswer for my sanity, but I understand it not sitting well with you. Hang in there, and I hope you get what you’re looking for on Friday.

Charlene.

[Charlene Marshall]

Please keep us posted on how you make out as well Marianne. Goodluck with the VATS on Friday! Thanks for taking the time to reply with such a kind manner to Timothy, as well 🙂

Regards,
Charlene.

[Marianne]

Charlene –

Thanks for thinking of me.  I will let you know how I do.  Good luck with your doctor appointment Friday.  I hope you get some answers to your fatigue.  These lung diseases are not fun.  You are so young to have been diagnosed with a lung disease.  They are telling me I am young for lung disease and I am in my mid 60’s.  I have 2 adult children who are older than you.  I can’t imagine them facing an ILD in their late 20’s or early 30’s.  I never answered so many questions to determine why I have an ILD.  I have accepted that I will probably never know the answer to that question.  Just taking one day at a time and trying to live my life to the fullest.  Have you taken your trip to Hawaii yet?  If so, was it everything you hoped it would be?  Awhile ago I adopted eating vegan and lost around 30 lbs so far.  I feel better.  Not sure if this helps or hurts with an ILD.  Sometimes I cheat and eat small amounts of chicken in a salad.  I have some friends who think I am crazy but it works for me.

Regards,

Marianne

[Timothy Black]

Marianne – Yes, idiopathic has become my label. A few others issues with the same pasted on them. LOL  Yeah, I worked with some odd chemicals in my laboratory years and isocyanate is most likely the lung culprit. I am one of those who want to understand which is a little funny because my view on life and all there is falls beyond belief and disbelief of things. Complexity is vast.

Charlene – Hope you do well with your appointment Friday. I have felt (lol?) that if I’m making progress and then the rug begins to slip out from under me, I want to understand it. An hour on the treadmill wearing oxygen and then having my progress begin to evaporate…. For solace I need a full class in pulmonary. Not that I am brilliant by I have self diagnosed twice before where the physician thought me wrong. I was right. Diagnosed at 28? That is a stumper. How old are you now?

 

[Charlene Marshall]

Hi Timothy,

Thanks for sharing your thoughts, and the well wishes on my upcoming appointment tomorrow. I too hope it goes well, and sure hoping to get some answers that are helpful. Definitely sounds like you know yourself well, always important when advocating for our health as patients. I am now 31, was diagnosed in April 2016. 🙂

Regards,
Charlene.

[Charlene Marshall]

Hi Marianne,

Thanks so much for writing and letting me know how things are going for you. Wishing you luck on Friday too! Regarding my age, it took the team of specialists who followed me 13 months to diagnose me despite something really being wrong with my lungs because I was “too young to have IPF”. One doctor I saw even questioned the diagnosis due to my age, but I truly trust my pulmonolgist (as much as I wish I didn’t have to!). I try to live like you, just one day at a time and doing everything to the fullest. I focus on quality of days not quantity, although that isn’t always easy.

I haven’t gone to Hawaii yet, I go this coming September! 🙂 Although it seems far away now, it’ll be here before I know it I am sure. I’m still in the planning phases, but doing a bit every few days. Have you ever been? Glad you’ve adopted a diet that is working for you, keep up whatever you think helps.

Take care and I hope tomorrow goes well.
Charlene.

 

 

[ARMY PETE]

hi charlene , we “spoke before”so far my diagnosis is ipf.honey coam slowly progressing.ofev made me sick after 7 weeks i quit it.scared to try the other drug.dont want to go through living in bathroom again.as of late , i am out of breath  making the bed or taking out the garbage ,even showering is difficult.i have ptsd .i am a vietnam vet and agent orange  may have been part of it.the va however does not recognise ipf .so the say its likley from smoking etc etc .thanks to trasedone i sleep sometimes 10 hours .but i am still exauste  ans nap during the day.my vietnam friend envy me for getting so much sleep…..i would rather sleep less and have more energy.next appt.at the va pulmenary dr is in oct for another cat scan and the horrible breathing test.i dont know why i shared this ,guess i just wanted to reply tp some of the comments.i struggle withat darn cimbia cort it makes me cough so hard that tears come out and my hard goes nuts.i just got a concentrator but have not used it yet.oximeter is around 94 when i sit,86 or so when exhausted.crap i hate this .allways been healthy .finaly retired and now this.any way , happy mothers day to all the ladies

armypete

[Charlene Marshall]

Hi Army Pete,

Yes I remember corresponding previously, I hope things are going as well as possible for you. Thanks for the update! I can relate to the “smaller” tasks of daily living that leave us feeling short of breath, making the bed, showering, etc. It sure seems unfair, doesn’t it? Do you need to stay on the medication if it makes you that sleepy? I know sometimes it is necessary so truly just asking out of curiosity 🙂 I feel like I sleep a lot as well and people don’t seem to understand that isn’t by choice. It’s frustrating sometimes! I’m glad you got a concentrator and hope that helps a bit; I love mine so do let me know when you try it out how it goes for you. Which one did you get? Thanks for writing and feel free to connect anytime. Sometimes it is just nice to be around others who “get it”. Take good care Pete!

Regards,
Charlene.

[Jan Riche]

Hi Army Pete,
Love the Army, was a WAC in the Vietnam era, but did not serve in Vietnam Nam or Japan where a lot of support served. I believe the Army made me grow up. Certainly gave me an education through the GI bill

As to OFEV, I had the same problem but changed to Esbriet and no side effects. No way to know if it’s slowing down the IPF but worth the chance. Lately food tastes off, I don’t know if it is the Esbriet, the pharmacist says maybe. I am not willing to go off it to see. I anyone has taste changes with Esbriet, I would appreciate hearing about them.
Jan R

[Marianne]

Hi all –

Biopsy results UIP – Usual Interstitial Pneumonia.  Have appointment this Friday, March 24 with my pulmonary doctor.  I am sure we will have much to discuss.  From what I know I am thinking he will say that it is IPF but will wait to see.  I was screened in 2018 for all the various autoimmune diseases that cause ILD and all were negative.  I have a feeling I will also be listed as idiopathic.  Staples and stitches will come out next Monday.  Pain is now down to a dull constant pain except if I cough, laugh or breathe deeply.  One day at a time.

Hope you are all having a great day.

Marianne

[Mark Koziol]

Marianne, thank you for informing the forum regarding your diagnosis. Mark

[linda waldschmidt]

Does anyone feel like if they went to the doctor sooner, they wouldn’t have ended with ipf. If coughing started a once in a while a few weeks before being admitted to hospital. Also had one time of shortness of breath when doing stairs and had chills one day. the more severe shortness of breath was a week to a week and a half of going to the doctor. Then put on antibiotics. Took the dosage and went back for a second dose. Took second dose 2 days and then went to ER.

[Charlene Marshall]

Hi Linda,

Thanks for your reply and for bringing up this conversation. In hindsight, there were probably indicators that should have flagged me to go to the doctor’s sooner but I try not to think about that now. It takes too much energy out of me to think of the “should have, would have’s”, especially since I’d always been really healthy and have no history of lung disease within my family. There was certainly no reason for me to suspect I had a lung condition at 28! It is hard though, when I think back, I experienced shortness of breath for awhile before seeing the doctors and even when I did, it was 13 months worth of tests and treatments which weren’t accurate for my diagnosis. You raise a really good point though, as it doesn’t help folks to think in hindsight. Maybe this is where the focus of research needs to go towards: early detection of IPF. What do you think?

Thanks for sharing and I look forward to continuing to chat with you.
Regards,
Charlene.