1. < Lung Health

IPF How To Cope with Sick Feelings

Posted by vaugen @vaugen, Mar 16, 2017

I got a type pneumonia in May 2015 an never felt same. I work in a high stress long hours job and in 2016 could not work 4 hours without resting and napping. I August 2016 I suddenly got out of breath climbing steps, mowing doing anything with my arms. I went to ER extensive heart evaluation was fine BUT my x-ray was not good. Had a CT showed PF did all blood tests in Sep the lung Biopsy end of Sep showed I had IPF. I started taking NAC and my ER visit 2 weeks ago shows no change. NAC maybe working??
BUT I have most days miserable. Get tired easy, the feel sick all over (like bad flu), chest feels full and tight, BP high 190/100 then goes down after sleeping, (I sleep 7 hours solid) muscle aches, weak, dizzy etc. My doc says IPF does not cause that. I do not want to take Esbriet cause I feel bad now.
Anyone experience these feelings?

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rfree1 | @rfree1 | Apr 5, 2018
In reply to @colleenyoung "Welcome to Connect, @vaugen. I'd like to introduce to a few members who also have idiopathic..." + (show)
@colleenyoung

Welcome to Connect, @vaugen.
I'd like to introduce to a few members who also have idiopathic pulmonary fibrosis (IPF). Please meet @tula @steve1948 @rayhastings @oliver22 @loisblo @agullotti @kelloggk @raincrowe @lydoff65 @dfay and @myiokubo.

Vaugen, you mention a number of side effects that you're experiencing. I wonder if they might be a combination of side effects of IPF and/or the medication you're talking: N-acetylcysteine (NAC). According to the following 2 articles IPF can cause your muscles and joints to ache and NAC's side effects include tightness in chest, fever, nausea and more.
- Pulmonary fibrosis symptoms http://mayocl.in/2fPg1ds
- Acetylcysteine (Inhalation Route) side effects http://mayocl.in/2ntl8Tp

I also encourage you to read and take part in this discussion on Connect:
- Pulmonary Fibrosis http://mayocl.in/2ntrBxC

Vaugen, did your symptoms appear once you started NAC? Are you on oxygen?

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My husband had A-fib and in 2007 he had his 4th ablation at Cleveland Clinic. The cardiologist/electrophysiologist at CC told him in his first appointment that he wanted him off the Amiodarone immediately... he was off for 9 months until he actually had the ablation. The ablation worked because it was done differently then the other ablations. No the symptoms are not reversible and he was pretty much stable for a few years but he was hospitalized in September 2017 and it seems the PF is progressing more. Even though he is off the amiodarone it stays in your body a long time and he was on the med for over 7 years. His original cardiologist who put him on amiodarone in 2005 wrote a letter to his PCP asking him to monitor him for lung toxicity but no one ever tested my husband for anything until he was short of breath and they told him after many tests that he had PF. There are many many articles in medical journals that agree that you can get PF from these meds.

REPLY
louisdl | @louisdl | Oct 19, 2022
In reply to @llwortman "Dear Anna: Pretty name ! I am a 9 year 5 month non small cell lung..." + (show)
@llwortman

Dear Anna: Pretty name ! I am a 9 year 5 month non small cell lung cancer survivor. I am alive because I was properly diagnosed at Mayo Clinic. Shockingly, I never smoked. During VATS procedure to remove my left lung and a 3cm tumor It was discovered I also had PF and part of my lower lung was also removed!
I had horrible pain for 2 years pre surgery & proper diagnosis. Local doctors dimly were not aware that an athletic never smoker could have lung cancer. Some suggested my choking cough was psychological.
After surgery I have lived with the unfair stigma, that simply just made me so mad, I started running, after I had the honor and pleasure of completing a Mayo Clinic Paced Breathing 3 month Research Study.
1- I do not believe anyone knows for sure how long a person will live. A life insurance company told me "Acvording to statics (at my 5 year survival celebration) You should be dead!" & my policy was cancelled!!!
I set a new goal, after running a 5K race in every state...to run a 10k in every continent! August 2016, I summited Kilimanjaro at 19,361feet altitude without any supplemental oxygen.
After lung cancer surgery I took baby steps and it hurt to breath
I couldn't sleep, walk, talk without taking a breath!
My loving husband tied my shoes when I couldn't bend over, and said, "You belong outdoors, let's go!" I could barely move, I walked heel toe heel toe.
I got on an elliptical machine, I got back on x country skis. I called my sergical team and said,"it hurts to breath!" Spring came I got back on a bike.
Yes it was scary ! But with Mayo Clinic amazing support teams I now believe Lung Cancer and lung disease has been my blessing.
My husband have recently started a foundation to raise Lung Cancer & Lunh Health Awareness.
You have found an amazing network of support. The resources are priceless and support Quality Of Life!
We never know what is around the corner do we?
Anna, I admire and respect your goals and ambitions as you have shared. Get a second opinion, like I did! It saved my life and I have learned how precious living one day at a time with gratefulness and kindness truly is.
You bet, you can help others! It looks like Your heart is in the giving place ! Go for it! And welcome to Connect, the people are wonderful!
You deserve a big cyber hug! Thanks for sharing.
linda

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Hi Linda-
How can I get info on the foundation you started ?
And is there any hope of a vaccine for stage 4 NSCLC ?

Thanks 🙏
Louis

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