I have not had a Covid shot because of the compromised immune system. I also haven’t caught Covid. I am being treated for PF and usually need Oxygen at 7 while sitting and 12 when walking. I only take about 15 steps at a time. I would say isolation is best suited for me.

a I have found the best way to not getting Covid is isolation. Although I recently was hospitalized for PF, not able to get my breath, I was released 3 days later. No changes made on medications. It was described as a flare up of PF.
12% doesn’t sound like good odds to me as compared to staying away from people. Granted, not all people have… Read more

James, I cough every morning for 30 minutes and when laying down at night for 20 minutes. My doctor said it is normal, just take Musinex. I take liquid at night and 1 each 1200 milligrams morning and night. I will cough sporadically during the day. I have contributed it to the two positions of getting up and going to bed, irritating the… Read more

My pulmonologist put me on mofetil. That seems to get rid of 80% of my cough. As far as the runny nose goes nothing has helped except marginally,  Mucinex. I use a lot of three ply tissues. Ha! I take Mucinex both in pill form and liquid form. I usually only drink 2 teaspoons per day but I take 1200 mg twice per day.

Has anyone with a suppressed immune system been tested for antibodies after there second shot and what are the results. My brother-in-law said he was tested and his blood work doesn’t show any antibodies growing in his system. If they are not growing, I have to believe a third shot isn’t going to help either. Any comments?

Mark, I have been on 10 Mgs for 3 years. It is supposed to help with inflammation. But it did nothing for my cough. I tried both esbriet and ofev. They gave me some relief, but I couldn’t tolerate the side effects. I was put on Mofitil and that has given me the most relief. Your Pulmonary Dr. should evaluate what will work for you.

John, if you have a portable oxygen unit with a pulse rating of 6, there is no higher unit unless it is a bigger unit, floor model. So I am not sure what you are looking for. If your oxygen rate is dropping to the 80’s with minimal exertion, anything other than continuous flow is your only option.

John,

I have used an Inogen 3. It has 5 settings 1-5. No continuous flow. As my needs continue to grow, I have found the floor model giving continuous flow is the only thing I can use. I do use the smaller tank for portabilty, but only for a limited amount of time. As long as you don’t need continuous flow and depending on how much you travel,… Read more

Charlene,

I can definitely say, most of the fast foods have a negative affect on how I feel afterwards. Especially anything fried. I do well with baked fish, sardines, apples and eggs.I will eat other foods but with little side affects, but anything fried is going to make me feel worse.

Take care.

Jim D.

Hi Steve,

The VA switched me from Esbriet and Ofev to Micophenolate Mofetil. That worked for me with a significantt improvement in coughing. My son tells me to try super beets powder. All that being said, there is still no way to stop it. I’ll see if I can find your friends request. Take care and it sounds as f the VA is giving you the run… Read more

Hang in there Colleen. Looks like you too have run the gambit of life. Just knowing you are not alone is not always comforting, but it looks to me you are keeping a positive approach. This war against IPF is just that, a war. I hope you are surrounded by people who understand what you are going through.

Jim Dawson

Sorry Joe, but we do play the cards we are dealt with. I know life is nothing not without it trials. I some ways it is bitter sweet. There are many, many places I would have liked to have visited in this world, but not possible. On the other hand I am one of those who believe there is a brighter side after death. That doesn’t diminish the trials… Read more

Well BP was normal, but BPM was high as well as oxygen dropping into the 60’s. However, if oxygen stays too low for too long BP will go up. So the first thing to monitor is oxygen. The VA doctor had no other solutions for me and decided to see if there was an alternative to current medications. I have not seen a cardiologist as of yet. This… Read more

Thank you for verifying what my doctor alluded to. I do think following your beats per minute and oxygen levels gives me a better idea of when to sit down. Next on my agenda is to find a lightweight electric wheel chair. The VA has some, but I would have to buy a trailer hitch or a Van and have it adapted to what ever I buy. I just want… Read more

Dear Mrs. Swain,

The loss is tremendous, but the suffering is over. I am sure you will see him again, face glowing and in perfect health. May you find peace and comfort even in the separation for a period of time.

I have been on Mofetil for 1- 1/2 years. This vastly improved coughing from when I tried Esberit and Ofer and Prednisone. Two days ago I visited my Pulmonologist. He said the lungs which have blood vessels in them which gets stiff over time will not be picked up by BP ratings that we have since the lung blood vessels are operating separately… Read more

Charlene,

I switched to a ResMed Bi-Pap with an oxygen connector as part of the tubing. Oxygen is set at 2 litres for sleeping. It is able to transmit back to the doctor my sleep results daily. What seems different to me is the amount of water it uses. Very little indeed and it may be my imagination, but a finer misting of water breathing… Read more

I have had PF for several years prior to being diagnosed. I started using a CPAP machine 15 years ago and about 3 years ago switched to a BiPAP. Still had problems breathing throughout the night as I would gag or cough with the mask on. I upgraded to a new Bi-Pap machine in May of 2019. It has made a big difference in the Quality of night… Read more