jerryg
Forum Replies Created
-
I totally agree with Mr. Barnum . As a person that has IPF since 2016 and I see my condition getting worse with each passing month. In my opinion , Real lasting peace only comes from faith in Christ. This life is filled with troubles in one form or another and we all know IPF only adds more stress, pain and heartache. I pray for all those who have this terrible disease, I pray that they will find a loving kind heart, peace and joy. Mostly I pray they will find a person relationship with Christ and thereby real peace with the knowledge that this life is not the end.
-
Good luck to you. Why stop at 91 ?
-
Great Topic and thank you for the post. I won’t bore everyone with my IPF details except to say I’ve had it many years and it’s progressed to the point it now demands my full attention.
I just want to say Thank you to all of you who have post comments on here about depression and negative thoughts, frustrations etc. I too have had many of those feelings. It’s hard to get out of bed some days. I’ve taken all the high dollar Meds- Esbriet, Ofev etc. Getting your hope up only to realize they don’t seem to do anything but drain my bank account. Most frustrating to me was finding a doctor that I could trust. Lots of pill pushers out there but very few real Doctors.
But on to the subject of living life in my opinion, I live in the deep south, I find I have more trouble breathing during hot humid days, So I welcomed the winter we had this year. Heck, we had 5 inches of snow. What a site that was! just beautiful. I live out in a very rural area. I have a little side by side that I get on and take off across my place to go down to the pond and feed my ducks or go hunting or just ride around an hour or two until me or the oxygen bottle gives out. I am a believer in Christ Jesus and my faith in him gives me a great peace. I pray you will all find that peace.
Another important thing in my life and maybe yours is that we are sort of blessed with the knowledge our time is short. Yes this can be a blessing in some ways. We are able to see and understand things in a little different light than so called healthy people. A guy got so mad in a restaurant not long ago because his beans were over cooked. What a fit he threw over a bowl of beans. We can see whats important and whats not. Relationships are important, Kind words are important.
Mending broken fences is important. Having that special relationship with your maker is important.
Live the best life you can, while you can. Make sure you tell someone special to you that you love them. The rest will not matter in the end. -
Dear @vishal
I have IPF. In 2011 My father passed away from cancer. Two months before that I was working a 30 plus year career in the Oil and Gas Industry. I could see my father was going down hill, not much time left. I left that job to be by his side just before he was placed in Hospice. I am so thankful I had that time with him. He hated the drugs (Morphine) because it made him sleep. There were times when the pain was so great he would ask for it but mostly he just wanted to sit and talk.
None of us can say what the events of your fathers last weeks/ days will be like. He could end up in the hospital or die in peace in his own bed, but He will die. So what matters is the time you spend with him. Letting him talk and letting him know you love him. I pray you both find peace through our Lord and Savior Jesus Christ.
IPF is a terrible thing. As I said I have it and I know my time is short. I can only tell you to spend as much time with your father as possible while you can. You will be the better for it.
-
I’ve had IPF for 4.5 years. I got Covid in Oct. 2020. I went from living with PF to dying with PF in a matter of weeks. Those of you who are in the end stages know what I’m talking about.
My best advise is do everything you can to avoid the Covid virus. One study in Europe shows 49 % of all IPF patients have died after getting Covid. The rest just suffer more. Thank you China. -
Afraid of the unknown ! None of us will get any better with this disease and even without it, we all die from something. Put your faith in Christ Jesus and there is no fear or unknown.
-
I was on Esbriet, 4 pills a day = 4 headaches a day. I finally said no more. I am on Ofev now, two pills a day and milder side effects. If you are like me you understand that you’re not going to get any better over time. So enjoy the time you have left.
-
I have had PF since 2016, I took prednisone for the first 2.5 years. After swapping doctors I was put on Esbriet , 4 pills a day. I had terrible headaches every time I took one. I ask the Doctors to change my meds over to OFEV. Been taking it about 6 months. I was doing pretty good until I got China Covid in October. Now I’m on Oxygen 24 /7 Feeling weak. My Doctor says it will take months to get over the China Covid if I ever do.
-
When I read ” I’m so tired of being tired ” I thought to myself ,that says it all.
Thank you for sharing your story .
God bless you