James
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I have IPF and was stuck for the COVID twice since 2020 booster 2022 and tested positive two weeks ago, no symptoms though.
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I can’t complain. 150 for me and my liver panel is clean, no effects yet.
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my numbers change like the wind. I run on 6 ltrs on my concentrator during waking hours and 3 at night. my saturation averages 80-85% with some lows hovering in the upper 40’s. No joke. I tend to push things a bit but I am well aware of my limits.
All I can say is just keep monitoring her numbers and adjust as required to maintain comfort. Do keep in touch with the doctor. Keep a journal as well.
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At any other time I would consider my sneezing to be funny, but the pain and overall bone jarring and teeth rattling is shear misery. The sneezing hits me with five to eight hard sneezes in rapid fire, so fast that they actually sound like one sneeze! My tongue gets caught between my teeth and my jaw slams in the same manor as the sneezing. I loose sight as my eyes squint up and if it happens when I’m driving, God help me! My doctor told me it is most likely a side effect of my meds and I have to adjust to it. I know this thread isn’t really about the sneezing, but the last write mentioned it. Diagnosed IPF mid 2017 and still dealing with life in the fast lane…lol…
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I was diagnosed IPF in 2017. I am sure that I have expelled several dozen gallons of mucus since then. I use face cloths to cough into… they are soaked within an hour or so. Ofev 150 x 2 a day and Guaifenesin 400 mg x 3 a day to make coughs more productive, that it does…. it works better than nothing I suppose.
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My, next to telling my bride, telling the children was really hard… no, rough to do.
My son and his wife, my two daughters and their husbands, each got a phone call as they live many miles away. I made sure their spouses were with them as I told them… as an engineer I tend to be frank, which I feel lessened the shock of a flowery explanation. I could hear the sobs from each… it tore me up. There is no easy way, but a necessary one.
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15 years???? I’ll have what you are taking!! That is awesome and hope you have another 15 years.
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first, get a prescription as the concentrator is considered a medical device and regulated by our wonderful, compassionate government….. anyway, I have an inogen one g5 i use all day long. I have batteries and wall power. it is good for 6 ltr hr pulsed. I fly quite a bit and you need one for flying, can’t use tanks. I had to pay for mine myself to the tune of just about 3100.00 long time battery (10 hours) cost another 400.00… I needed 2 of them. the cost can add up, most insurances don’t help out.
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Mine is a strange story I guess. I was diagnosed in mid 2017, and started getting sick, coughing, vomiting, chest pains…. running the gauntlet of things that could be thrown at me. It turned out as was determined in late January 2018 that I was having heart attacks right at the time of the diagnosis. I had a triple bypass and an aortic valve replacement. It took the best part of 10 months before I felt normal. Although my heart got better my lungs didn’t. I was placed on Ofev and all the usual drugs to combat the side effects.
One by one my ‘friends’ have fallen by the wayside. Sad, I haven’t changed. Strange how that happens. No drop-byes, few phone calls if any . I just had my 64th birthday last sunday. Besides my children and wife…. crickets.
I’m not demanding them to be around. My life is now way to short to worry about it.
Things I placed in the front are now way on the back burner if even on the stove.
So my wife, doctor and I talked of a transplant. I have talked to my family at great length of it as well. Ultimately the decision will be mine.
As selfish as this may seem, I have decided to opt out. I have my reasons.
The prognosis is a 50/50 deal although the odds are better now of initial survival then they were just a few years ago. Single or bilateral transplant? Getting o a list, choosing the right hospital… surviving to the day of the transplant. Just reading the stories above gives me no great comfort.
My doctor and I broke the numbers down. I will almost be dead when and if I get a set of lungs. Surgery time is like that of the heart surgery, about 7 hours or so assuming there are no complications during surgery. He told me that I should expect a solid 9-10 months of rehab just to get to where I can function an a normal level. The next number, 3 to 4 years, is about when the body will start to attack the lungs. To be clear, your body will start the process over again, destroying the alveolus as before. The cycle will be much faster the second time around. He was very clear that this procedure is glossed over and he wasn’t going to do that. Then the hunt begins for another set of lungs. If I wanted to try again.
I know most everyone wants to live a long and fruitful life, but if the quality is not there then all you are is s shell of what you were. That is not for me. I suppose the question is have you lived your life to the fullest? Do you think you will do anything noteworthy after a set of lungs gets installed? Are you square with God? Your family? You don’t have to worry about friends… do you now?
Yes, this is a horrible disease that I would love to remove from my body, but as of yet, it will ravage through me.
My choice is to opt out of the transplant. Someone else can have the lungs that is younger then I and someone that may have young children, a growing family. I have all that. I am happy with who I am.
James
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I am a frequent flyer. I average for to eight flights a week. I have flown all but three weeks since January 2, 2022. I have flown virtually every week since the pandemic started and many many weeks before… years actually.
I was diagnosed IPF mid 2017 and given the usual 5 to 7 year prognosis. I was placed on oxygen and I managed to get hold of a portable oxygen concentrator (POC). I also have all sixes of tanks which I use in emergencies.
Back to the point. No airline allows tanks. None that I am aware of or fly, but all allow the POC. Rules are mostly the same: you need 150% of your flight time in battery reserve, an 8 hour flight will need a 12 hour battery or the equivalent in time. I carry a 10 hour on the unit and a 10 hour reserve battery.
The POC I use is a pulsed unit, on demand when you breath. It learns your breathing patterns. As it is a demand sensor you cannot piggy back or run the units tandem. maybe some other constant unit like the gigantic one in my office which I have routed through my house might do that.
My doctor has me using 2 ltrs at all time of the flight and I can change the demand based on how I feel, but changing the demand effects battery life. You cannot use the power plugs on the aircraft as a supply… just not allowed.
These things are not cheap, some costing 4 thousand dollars. Batteries cost too.
All in all, they are not the end of all things good, but they do help.
James
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sorry to say, but get used to the coughing and the endless phlegm. After taking the OFEV, I have about a 30 minute grace period before I cough to the point of vomiting. I carry a towel around so I have something to catch my product. My doctors have tried every combination of pills, capsules and sprays to stop the mucus and cough but nothing is working. Hideouts disease this I.P.F..
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I don’t know why it takes so long for a C.T. I have had the M.R.I. but my doctor says the C.T. has better definition. I get my treatment from the vet admin., and they are faster than my regular doctor for treatment.
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oxygentogo.com is who handles my poc via delta
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The government considers the POC to be a medical device and only administered with a prescription from a medical physician. To sell it or trade it off to someone who does not have a prescription is considered illegal and can be prosecuted although I have not heard of anyone actually being arrested for it. It is based on a percentage of oxygen that the unit can supply, I believe anything over 92% is considered a medical device. That is what they consider a POC such as the inogen.
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I have been flying with an oxygen concentrator twice a month for the last year. I have to call in to get my Inogen cleared each time I fly with my airline. Besides that, it is not a problem flying with them. You still have to wear a mask for the most part on the flights. I have to certify that I have enough battery power for at least one and a half times the flight duration. It really has helped a lot having the oxygen concentrator during the flights.
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I started with the clearing 2 years before I had a positive diagnosis. I have a solid cough, productive most of the time… my last CT shows a rather agressive progression since last year. I’m still here…. lol… Clive
