Jim Dawson
Forum Replies Created
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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.
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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 that luxury. -
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 lung positions. I am on oxygen 24/7 and 20 steps before being out of breath is normal for me. No lifting or bending over. Oxygen is set on 7. I simply contribute this to PF progression. I take Mofetil as neither of the two normally prescribed pills worked for me, without serious side effects.
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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?
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Mark, I have been on 10 Mgs for 3 years. It is suppose to help with inflammation. But it did nothing for my cough. I tried both esbrit and ovey. Sorry for the mis-spellings. 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.
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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, I wouldn’t wrap up too much money in the lower producing machines.
Jim Dawson
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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.
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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 a lightweight chair under 50 lbs. that I can put into my trunk that is electric. I am scheduled to go to KU medical center through the VA in August. Supposedly a clinical trial, because the VA has no more options. Thanks again for answering my thoughts and concerns.
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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.
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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 sleep. It does not relieve the fatigue faced when getting up in the morning. I usually have to sleep 2 hours in the late afternoon, priming myself for bed by 10: oo PM. I even take modafinil every day, but that helps for about 4 hours. I literally force myself out of bed, by 7:00 AM. 2 hours later I am still trying to focus on things that need to be done. I have given up on mowing the yard or even home repairs, which aggravates me as I was always a hands-on DYI. I feel sorry for the person or persons who will have to clean out this home once we are gone. Not enough energy to even dispose of our home. Looking on the bright side, the golden years start when we leave our bodies behind. Hope this helps.
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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.
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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.
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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 around. Your VA records are available at any location. I would also contact VA in Washington.
Jim
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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
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Sorry Joe, but we do play the cards we are dealt with. I know life is nothing not without its trials. In 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 of life, but in believing the way I do, gives me the strength to move on, but not always without feelings of sorrow. I hope others will read your article, to help them understand that too much exercise can damage your health, just as little or no exercise. I pay a lot of attention to oxygen levels and my duration. Take care to you and all that are looking for answers.
Jim Dawson
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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 information came from the Pulmonologist. I won’t know anything more until after August 20th or so. And they may not take me in as a patient for clinical trials based on their findings.
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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 through the mask. I will wake up feeling like I have rested for the most part, but it doesn’t take long for the fatigue to set in and then a desire to take a nap; bummer. So many trials happening, but so little results. Too bad, but maybe someday there will be a real breakthrough. Take care of yourself and don’t overdue.
Jim Dawson
