[Meredith]

Forgot. You can find out how long the Inogen will last. If it’s not long enough to last through the outing, get an extra battery and don’t push.

It’s better to return home with a little extra oxygen than to run out. You might not be able to get home otherwise. You are the captain of your own needs and the ability to plan the now. Don’t worry about way down the road.

Learn to live one day at a time.

M

[Meredith]

Hi George,

I was an active person when I was diagnosed with IPF. I had to use oxygen at 2 lpm.s immediately. A year later, an exacerbation pumped me up to 4 lpm. I have a 35 foot tube and do whatever I want in my apartment. For activities out of the apartment I use Inogen. This works well and I’ve used the two for several years.

I’m always getting different info on financing through Medicare. The large at home concentrator costs around $500. The portable Inogen is nearly $3000. It’s complicated case by case. In retrospect, I would buy the at home concentrator and finance the portable through Medicare.

Try not to plan into to future. Every person is different. Take care of the now.

You can always tell your doctor you don’t want to do something they suggest and ask for a compromise. Oxygen use is not scary. You get used to it and you’ll feel happier and healthier.

Keep in mind that IPF has no cure. The meds are to help you feel better. Don’t even mess around with whatever makes you uncomfortable.

M

[Meredith]

I tried Ofev for a year. I was too sick from side effects to continue. I’m now using Esbriet. No problems. Those two meds are the only ones get info from your insurance company.

I think it helps slow progression but it isn’t a cure.

Don’t waste your time on the cause, take care off the now. Oxygen therapy helps tremendously. Don’t be afraid.

M

[Meredith]

I don’t have any confidence in my ability to research causes of IPF. My pulmonologist did that when I was diagnosed 4 years ago. I am 81 years old.

I have been on oxygen the whole time.

My medications for other things have not changed. I jut have IPF.

I don’t think the cause matters at this point. I eat well, don’t drink, exercise moderately, yet still have this disease.

Treat your symptoms forget about the cause. You are past the stage of prevention.

GET ON WITH LIVING LIFE TO THE BEST OF YOUR ABILITY EVERYDAY.

M

[Meredith]

All of the POCs are pretty good quality. I don’t suggest getting one until you need it. They get the machines to you in a few days. There are few continuous flow POCs and they are a bit bulky. Inogen is advertised on TV the other brands are not.

I’ve been using another brand for three years. Don’t hurry too much.

This disease moves slowly. No point in trying to get ahead. 🙂

[Meredith]

Ofev made me very sick and I had excellent support. I would not allow myself to continue a medicine that they thought might help. Several nurses and an Ofev rep suggested peanut butter. Result: I get nauseous from just smelling peanuts. My Dr switched me to pirfenidone, generic for Esbriet.. my symptoms are so much better.

If you have a hard time breathing ask for oxygen therapy. IT WORKS. Explore medications, diets, to help you feel better.. you are not going to find a cure by yourself. Do your best to feel good.

If your doctor is not a good fit, find one who is. Remember there is no cure. Look for ways t feel better. I feel better after ice cream. You might not. There are those who think ice cream is awful.

Find what makes you feel better

[Meredith]

We have a serious , progressive, and incurable disease. Please live your life right now. Do not waste your time alive by trying to control your death circumstances. If you have a caretaker, let them take care of you. You are unique. LIVE YOUR OWN LIFE NOW.

[Meredith]

I am 81 years old and have had IPF for 3 years. It is severe and I have access to a good pulmonologist. There are two meds available but they don’t address symptoms. I have had to use supplemental oxygen since the diagnosis

There is nothing bad about using oxygen you will feel so much better when you are using it. You have to get used to it (the cord) but it doesn’t take long

You can get a portable concentrator to activities

You can use oxygen to feel better You can not use oxygen and feel worse and worse.

[Meredith]

Hello Pops. The only person to be your advocate is yourself.

Esbriet and Ofev are specific for Idiopathic PF. I don’t know what your diagnosis was.

My pulmonologist ran a good half dozen blood tests to rule out other causes. I also took the complete pulmonary function test, had a chest X-ray, and an HRCT. There was no question about the diagnosis.

I live in a small southern town. I did not travel to faraway places.

Go to another doctor. Tell them you are very sick, get a referral if needed. Get O2 treatment soon. Talk about the meds. There are funds available if you qualify.

I am a single, 80 year old woman. Don’t have a care taker. If I don’t take care of myself, I won’t last as long.

Get busy

M

[Meredith]

My diagnosis is IPF. It means the cause is unknown. I don’t know what my life expectancy is but I do want to live it with what ever it takes to feel close to normal. I’m on oxygen and am duty years old. If you have a caretaker you are blessed b

I live alone and don’t have a caretaker. I see my pulmonologist every three months and my internist every six months. I have trouble breathing wearing a mask and my area has a lot of COVID. I’m staying inside more.

As long as I am not short of breath I’m reasonably happy.

All of the initials of conditions confuse me. They just make me worry. To hear people walking three or four miles a day makes me feel I’m doing something wrong. Truth is I’ve never had any desire to walk that much.

The more doctors I feel I must see just makes my “NOW” stressful. I don’t try to redo the past or take charge of the future. Today has been quiet but lacking stress

I don’t know about tomorrow.

Meredith

[Meredith]

It seems that many would like to avoid the doctor and take the advice of strangers.

That said, you need an Oximeter. Get it at the drugstore. If you go below 90, rest.

There’s nothing shameful about using oxygen. No worse than glasses or hearing aids.

You need it especially when you are not at rest. Find a portable source of oxygen. Use it. The need for oxygen will not go away if you try to ignore it. You might. Think about it.

Meredith

[Meredith]

Hi scared and confused.

This a a scary diagnosis. At first I thought the pulmonologist just didn’t really care. Unfortunately, there isn’t very much that they can do. The two antifibrotics May help slow down the progression.
I’ve had two years since the diagnosis and am on 4 lpm oxygen 24/7. I can still do a lot of things that I want to. I stay away from extreme heat and cold.
Yes, the steroid nose spray is irritating, same for cough but nothing worse than when I’ve had a cold. It just doesn’t go away.
I have to accept that this is how it is. Oxygen helps me feel better. So do my hearing aids and glasses. I try to explain that my lungs are scarred and less flexible. It’s no worse than heat disease. Just as unpredictable.
We’re all advised to drink water, eat healthy foods, and get plenty of sleep.
Most people take breathing for granted. We don’t.
Try go get the most out of life that you can.
If you get short of breath, contact the pulmonologist. Otherwise just live your new life.

M

[Meredith]

Hi Laurie,

The 2-5 year life expectancy was the fore the antifibrotics were available.
They help slow progressing some.

Wait until you see a pulmonologist before making any decisions.

As everyone has said, take care of diet and exercise. More exercise than the recommended 30 min. Per day won’t make any difference.

PF is a chronic, progressive, and incurable disease. Stay in touch with your pulmonologist. Go to check in appointments. Avoid catching colds, flu, etc.

You will look normal so act normal. Do not try to plan your future just live in each day S it arrives.

[Meredith]

Improved spirometer y values mean that you were breathing better the day you took the test. It does not mean that your disease has improved. The good news would be that it

Yes, TLC AND FVC May fluctuate but scans and X-rays tell the real story. Keep seeing your pulmonologist so that if you have an emergency you know who to call.

I’m a doctor but not an MD. I can’t treat myself or diagnose myself.

keep in touch with your medical team and be compliant. Remember how you felt when you were out of breath. don’t go bCk there

 

Meredith

[Meredith]

Hello all.
There is no shame in needing and using oxygen. If your doctor says you need it at 2lpm, why aren’t you doing that?
You will consistently feel better, you’ll be keeping your heart strong, and your judgement will not be impaired because of poor oxygen supply.
With a POC you usually need one setting higher. I carry mine by hand but put it into a shopping cart when available.
You look more sophisticated carrying a poc than you do lying in a bed wasting away. If you don’t think you need oxygen because you feel fine but your sats are in the seventies, your judgement is impaired.

Meredith

[Meredith]

Hello all.
Most of us are patients. We can only relate our own experiences.

Those in this discussion do not mention contacting their pulmonologist. Why would I trust my health to other patients, oxygen equipment sales people, or internet websites.

This is a serious disease. No one knows my personal history and disease information than my doctor. Your o2 stats may godown when you first stand. Let things settle then start up. If your o2 drops below 88. REST until your sats are normal. As long as your sats go right back up you are ok. Proceed at a slower rate.

We have an incurable disease. If we are up waking around, we are not dying from it right away.

Don’t overthink things or try to reach perfection. A smaller life is still a life. Don’t waste it diddling around with Oximeter and changing concentrator settings.

Meredith

Meredith

[Meredith]

Pulmonary Fibrosis is incurable and progressive. It can be aggravated by environmental issues such as smoke, allergies, chemicals. The progression may be fast or slow. It doesn’t go away. Supplemental oxygen may be needed.
I can’t tell of your GP is being dishonest or just doesn’t know about PF.

Ask for a a pulmonologist referral.

Meredith

[Meredith]

Weight management usually depends on my attitude and my prescription meds. I have severe IPF and immediately began Ofev. My doctor perceived little difference between the two but felt the company patient rep was helpful. I was very sick nausea, vomiting, diarrhea for months. My weight did not change. I changed to Esbriet and had few digestive issues.
I had an AE and began high doses of prednisone for months. Gained 30 pounds and it caused diabetes. My diabetes prescription, Metformin, was added and I limited my carbs to 100 per day and lost 35 pounds. Maintaining at 150 carbs per day. Metformin is good for PF.
ASK YOUR DOCTOR. I’m just another patient with no medical background.
Meredith

[Meredith]

First of all you will never read about someone’s end of life experience. For all we know it was peaceful.
I try to stay in the day and I can plan for tomorrow only to the extent that I know I can change my plans if I want to.
It would not be helpful to know. Intellectual knowledge may make you always miserable.
You’ll be cared for.
Accept the fact that you will die, probably from this disease. Be ready everyday by living that day to the fullest. Read voraciously, eat with gusto, try retail therapy. Stay in bed and take it easy. Make today the best.

Meredith

[Meredith]

I also reacted to a brief time in the sun. I used sunscreen on my face an neck and the rest of my body was covered. It was very hot that day. When I got home there was a rash on my face and by evening I was itching all over. Next day was fine. Now I stay out of the sun. An umbrella is helpful.

We have to make hard choices with our disease. If indeed these antifibrotics slow it’s progress I will do what ever it takes to make them work for me. I take Esbriet.

Each responder answered differently. You have to see what works for you. If you get a sunburn or a rash every time then I would stay away from the sun.

IPF is, to me, worse than cancer. There is very little to be done to feel better and no cure.

Sit in the shade and sip a non alcohol mojito.

Meredith in the South

[Meredith]

Two tasks a day keep the doctor away.

I get overwhelmed and too tired with more. If I only stop when I feel tired I end up with achy muscles and cognitive difficulties.

Two days of rest for each day of letting myself overdo it

Meredith

[Meredith]

Few people mention the more tolerable Esbriet. It is an antifibrotic just like Ofev. It’s now generic. Its generic name is pirfenidone and my insurance includes it as a generic like all the others.

The OTC cost used to be $70000 a month. My insurance covered that but I still had a high copay.

It is very effective, fewer side effects, now with a lower cost.

Ask your pulmonologist!

[Meredith]

My Doctor has told me that if I want to use supplements recommended by individuals on the internet, I need to decide whether to depend on their advice or his.

End of…..

[Meredith]

It sounds like oxygen therapy can treat the breathing issues. I dint want it but boy, do I feel better with it