[Donna]

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 long he did the minimal. Finally I told the Asthma Dr. I wanted a change after I had COVID and Pneumonia she sends me to this local Nigerian Dr. with current CT results. He says you have 7 years to live. So shocked! Where is that coming from?

Back to Asthma Dr. never seeing him again what a downer. I want to go to the big teaching hospital. They tell me not much change and they had years of my CT’s. How could a Pulmonary Dr. talk to someone like that pull a number out of the air and make them lose all hope?

[Donna]

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

[Donna]

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.

[Donna]

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 much more thorough and detailed than the first Dr. So glad I did. It is a very busy place hard to get appointments. I have been on Esbriet not a good experience after that decided not to do OFEV. Dr. was OK for now since I was pretty stable my last appointment. Hopefully stays that way.

[Donna]

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 all COVID Shots and Boosters and still caught it. I have had IPZf for now 6 yrs at that time was still considered Early Stage going thru all that caused more lung damage. M next CT showed the change. I was scared for the first time really. I found a new Pulmonary Dr. that does know what he is doing with my last one really didn’t.

[Donna]

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.

[Donna]

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 time this has all  really gotten “real” to me now.

[Donna]

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 will need to. They have been family  and I have been through so much the last few years.
I know you and others will feel different in regarding this. Anyway this is what I am doing.

Diagnosed 5 1/2 years ago Early Staged.

[Donna]

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 that means.

I have tried to give this a lot of thought what to do and my decision. So afraid of the repeat of the Pirfenidone. I told the Dr. If there was no clinical trial soon I would go on the OFEV. I have already gotten partial support thru my pharmacy and hope to find additional. So hope it goes better..

[Donna]

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. I even spoke to the Appeals and Reimbursements Dept. How Rigid! I would be saving them mostly me alot of money of course I have not met my deductible and if I did the lower $$ it would not go to my deductible. So ridiculous what we have to go through with our insurance these days as if we don’t have enough to deal with our health issues to fight with them. A 3 hour call and to be on hold most of it and the rest people who just don’t know anything.

[Donna]

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 getting me on meds and doing testing, autoimmune testing. I also, just started Pulmonary Rehab today. I had a fall over the weekend so could only do upper body.

[Donna]

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.

[Donna]

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 participation.

 

[Donna]

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 the thought another round of possible side effects and the Specialty Pharmacy told me all of them. I do know the alternative Diagnosed Early Stage 6 years ago last year due to Pneumonia first change.

[Donna]

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 my deductible. Just found out Pulmonary Rehab is $460 a session. They want me twice a week crazy expensive.
I just fractured my hip Christmas weekend so can only do upper body for 3-4 weeks til hip is better.
As far as Medicine on second week with a few side effects GERD which take meds for, itching, nausea, trouble with eating x3 a day. Diagnosed 5 years ago Early Stage PF. Changed Dr.’s this year and now being put on meds and medically treated for Fibrosis at University Hospital in Dallas.

[Donna]

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 idea of a small ice chest that is a good idea if they will fit.

[Donna]

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 many times this was hopeless. Not getting any kind of assistance since Genenetech being shut down. Feeling hopeless then it got better today somehow. How it gets better.

I had a Colectomy last year so already have GI problems. Hope it doesn’t get too bad.

[Donna]

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 a Hematologist.

[Donna]

I would be interested as well.

 

Donna

[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 before it started. So tough kicking things for me.

Have not started PF meds yet it is in the works see Pulmonary Dr. in December will know then.

My second time with COVID this time taking  Plaxovid not as bad as first time so thankful.