My very first visit to the Pulmonary Dr. he told us to elevate the bed. I also, feel better with at least pillows. I had a hip replacement in August and still find it hard sleeping on my side. I put a pillow and prop it under my back so I am not totally flat. Sleeping is not an easy thing anymore like it verbally was. Diagnosed going on 8…

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My Husband had Small Cell Ling Cancer age 39 never smoked got it from second hand smoke (parents chain smokers) regardless your comment Dr.’s I heard made a comment everyone carries a gene and something triggers it. He died within a year. We had an HMO I had to fight for his care the whole time it was an aggressive cancer. They just gave up on…

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I have had a Colectomy my large Colon removed about 6 years ago not too long after being diagnosed with PF. Tough couple years.

Recently I had a Total Hip Replacement due to Osteoarthritis. I just turned 65.

I go for checkups twice a year with Pulmonary Dr. due to no Colon I have many digestive issues. I did try both Esbriet and OFEV it was…

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I was diagnosed about 6 years ago by my Asthma Dr she kept treating me for Bronchial infections finally sent me for a CT. Then came the bad news by phone Bo had no idea what it was not explained just sent to pulmonary Dr. not friendly and still no real explanation of how, what I could have gotten this.

I dreaded his visits. I put up way too…

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I had COVID and Pneumonia and once over when I had the next CT my PF had worsened hard to say which had the most effect or both did on my lungs

I also, have a very hard time breathing in the mornings. I have asked for Oxygen when I go short distances of exertion. They say it is still the Six minute Walk. That most days I can do. My heart rate goes high Oxygen rate stays somehow OK most of the time.

I went to a Cardiologist for a Full Work Up that had helped with breathing and change of inhaler.

I am not good at figuring this site out. Where is the best most affordable loaded to get Manual Honey? They have so many on Amazon.

Hi,

I was originally diagnosed PF Early Stage 5 years ago. I have had COVID twice the second time last year and had Pneumonia caught COVID for the  second time caused more lung damage. I had the hardest time getting over Pneumonia then the Cough came. I switched Pulmonary Dr.’s like starting everything all over again not easy to do. He was so… Read more

I just asked my Dr.’s office if my name could be submitted to the Clinical trial/Research Division today.
I was told I may get a call in the next week.
I was approached by another Hospital in the area a Clinical Trial they were doing I declined there’s. I didn’t feel I qualified for it anyway. I must have gotten 10 calls and e-mails on… Read more

Trying to find anything in the DFW area can’t seem to find much.
My new Dr. Said he was involved in trials now he says he is not??? So confusing. I think he doesn’t think I would be a good be a good candidate.

I have had COVID twice the first was really bad when hey were first doing shots. Last year I caught it from my Husband as hard as we tried with precautions. At the time I was so sick with Pneumonia and very Anemic so my resistance so low. With Plaxovid I got over COVID quickly not the Pneumonia.
I have had the Flu Shot, Pneumonia Shot and… Read more

I asked my Dr. I felt foolish after I got his response he said it is still going thru trials with annimal  studies and there are other meds much further along on trials and looking better.

May least I got a response. I don’t know if he will ever put me in a trial.

I had COVID the second time last year and when I had my CT done for the year my lung damage had changed from Early Stage and Dr. said considered Mild so damage after the COVID. For 5 years no change then I have Pneumonia and COVID same time combination it changed my PF. I did take Plaxovid thank goodness or could have been worse.

The first… Read more

I just got OFEV Friday and so hesitant about starting. I jumped thru hoops getting it with insurance, Dr., Pharmacy now it sits. I had a bad experience with Pirfenidone so sick finally Dr. took me off. I already have a lot of GI issues due to no Colon, no Gallbladder and it has been very difficult since I had the surgery 2 years ago. I dread… Read more

I have 2 Parrots but, was not diagnosed as that being the cause of my PF. My Pulmonary Dr. is not happy to hear I still have them. They were my first Husband’s  since passed and now mine and have taken care of them since then. They are in their late 30’s. I just can’t imagine rehoming them I know if it gets to a point I can’t take care of them I… Read more

Hi, I was on Pirfeni could not even get 1/2 way up getting through to the level needed in Esbriet the side effects plus currents issues I have just couldn’t do the Pirfenidone.

it has been a month the Dr. is letting me decide if I want to give OFEV a try. He said I do not fit into any clinical trials with my condition. I am not quite sure what… Read more

I was on the phone with my prescription insurance for 3 hours yesterday. They want to charge me my next fill for Pirfenidone $900 when I could get it with the TX Drig Discount Card at the local Phsrmacy for $284. They could and would special order it. My insurance said it is not one of their approved Pharmacies and they would not reimburse me.… Read more

If you have never gone to the VA for health issues how would you get started if you needed to? My Husband has very good Private Insurance but, of course there is a deductible and coinsurance amounts til you meet your max. My prescription Specialty insurance is helping out with Perfenidone (Esbriet) to a small degree which will help til I get to… Read more

Just started Esbriet on my second week. I was diagnosed 5 years ago my First Pulmonary Dr. never discussed medicine with me. This year I finally decided after being really sick I had to find a. Ew Pulmonary Dr. I had my CT and to my surprise there had been a change with my lungs. I for the first time was scared.
My new Dr. didn’t waste any time… Read more

I am on so many meds for different things if we have anyone come over I have to scoop them up and move them all out of site. I normally keep hem on the kitchen island one end of it. I don’t want to look like a pharmacy to someone who visits so I just put it out of site than have to bring it all back out and set it all back up again. I liked the… Read more

How often are liver tests done? My bloodwork has been a mess for awhile going to a Hematologist.

After weeks dealing with my Compound  Pharmacy finally got a ship date for delivery Tuesday. They even came up with a co-pay savings program to help me. At first they were very ugly and unhelpful last week.  I thought after being transferred so many… Read more

My Hematologist is testing me to see if I am immunocompromised since I struggle so much to get over anything I catch. So far my One of my Ig counts are low and I think for insurance purposes she will have to repeat before an Infusion. She said if I get the Infusion I would feel so great.
I had to get 2 Iron Infusions that is how I ended up with… Read more

I would be interested as well.

 

Donna

I have had all my COVID Shots and Booster

My Husband caught COVID even though we tried to take precautions living in same home I caught it. I had Pneumonia at the time plus underlying Asthma.  Dr. Prescribed Antibiotics and Plaxovid.

After 2 months still coughing a lot  after  3 rounds Antibiotics cough still not gone. I was not coughing… Read more