Harletta Carathel
Forum Replies Created
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I had the same issues with Ofev. I have taken Pirfenidone for over a year and not one episode of diarrhea. I have not had issues with the sun sensitivity associated with the Pirfenidone either by just using common sense care. It’s worth a try! ====
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LKU is correct Using longer than a 4 foot tubing on a portable oxygen concentrator is a a tripping hazard. I even use a 2 foot long one on my portable and it works great. Does anyone have a tip for keeping the twists and kinks out of a 7 foot cannula on a stationary oxygen machine?
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Judy, Have you tried Esbriet? I took Ofev for several years with issues many others experience. I have been taking the generic of Esbriet about 18 months and have had no side effects to mention, even the side of effect of sun sensitivity. You might ask your doctor about it.
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I was on Ofev for several years. I experienced diarrhea and abdominal aches, but overall toleration was ok.
My doctor put me om the generic of Esbriet. I have been on it for over a year taking the maximum dosage with no side effects. Even the precaution of super sensitivity to the sun has not been an issue. I do take the normal care of using sunscreen and limiting my exposure time during the heat of the day. (We can get over 100 degrees here. )
I was apprehensive at first that I would not be able to watch my grandchildren play in their outdoor tennis tournaments, which can last for hours, but that has not been a problem.
I would ask about this alternative if you are having issues with Ofev. Worth a try!
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My doctor has told me to sleep in an elevated position to prevent GERD, not for breathing purposes But i sleep on my right side on a wedge pillow because my left lung is more damaged and this position enables blood to flow to my best lung better But during night I have to change position to my stomach for a while to be comfortable but then the chance of GERD happens.
Sleeping position is a problem!
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I have started coughing in the late afternoon for some reason. Has this happened to anyone else? If so, what do you do?
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I think you are asking the percentage of oxygen the unit is producing. Most oxygen supply stores have a device that can test the percentage and purity of the oxygen, but unlike tanks, the oxygen flow is not continuous. For example, a setting of 5 on a POC does not compare equally to a 5 setting on a tank. Try a short outing first, or even use in your home.
I have a POC when I am outside my home., but I breathe much on my continuous unit in my home.
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Cecil, I too cant sleep on my back. I know those who had covid had a easier time breathing on their stomachs. I take Ofev but have the same cough and phlegm as you. Some days the coughing and phlegnm is bad, especially first two hours of the morning, and some days it is not. Wish I knew why some days are better.
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The Respertonics simply go mini s to 5. I use it in a back pack so my hands are free
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Im 5’7″ and now weigh 109 fully clothed, to be considered for a transplant my BMI needs to be 18. Im now at 17. I have been on Ofev 150 for about two years.
It’s hard to breathe after eating big meals so I try to eat healthy snacks, sometimes not healthy, during the day. But so hard to gain weight.
Also does any one take a bone density increasing medication? I am hesitant to start one due to possible side effects. -
We are farmers, I was exposed to Roundup and many other chemicals for over 35 years. They say roundup causes non-Hodgkin’s, but I had Hodgkin’s before my diagnosis. I suffered a lung scarring event with one of my chemo drugs Bleomycin before my diagnosis.
Has anyone else with IPF been treated with Bleomycin? -
Many of you seem to know more about Tyvaso than I, but one of my doctors a Jewish National is seeking help financially for me to be on it.
After PH testing with my cardiologist, he did not think my PH was at the level to warrant any medication , but the doctor at Jewish is of a different view, so that is confusing to me.
I take Ofev 150.
I am not excited about the Tyvaso as it appears to be very scheduled, and if it cause more coughing, Yipes!
I am somewhat discouraged when I read of possible treatments on the horizon and then learn it could be 3 years or so before they are approved.
Dan probably too elementary but simple saline solution nose drops help my dryness, but I also have a runny nose shortly after rising for about two-hours, I use Ipratppium bromide for that.I am always open to ideas from anyone on how to improve the conditions and annoyances we share.
I love your dog Rob. We are beagle lovers. -
How wonderful you have been chosen! I can share many of your feelings as I have been interviewed for a transplant. But the shock of it actually happening – I would have felt breathless too! We live in a remote area but my husband knows one man who had a lung transplant several years ago. He is doing well but I don’t know any details.
I have this on my bathroom mirror:
Psalms 143:8
God does not want us to fear. Give this to God. Ask him to direct what lies ahead.
I would love to hear from you in the future. I am putting you on my daily prayer list, Russell. -
One thing I was told is to walk with your vacuum instead of pushing it. I also got a stick vacuum which was lighter than what I had. It is a Dyson and seems to work great.
I try to clean the area first that someone would see if they came into my house.
I got a back door mat from Weather tech that only needs to be shaken out. It also stops a lot more dirt than the rug I had that needed to be washed from time to time.
I did away with a lot of decorative pillows on my bed , and it actually looks better.
Have cleaning supplies in every bathroom so you don’t have to tote them.
If you or anyone has more tips. I would appreciate them.
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Nina, how is it used?
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Curt, Do you think the stem cell therapy would help a person with ILD that doesnt have an upcoming lung transplant? In what way to you think it helped you?
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Bert, are you in Z-1 or Z-2?
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Adelaide, I am a vain person I guess. I have been so slow to use oxygen in public or even at home. Like you, I thought you could become oxygen dependent. Sources say you cant. But I have learned, that depriving myself of oxygen made my heart work harder and can lead to serious heart issues. I use it at home and am slowing adjusting to using it in public.
Please talk to your doctors about oxygen use. The general rule is an O2 rate below 88 is time for oxygen.
Please take care of yourself. -
Karen, this sounds like me. It is that evening meal for some reason that the coughing is bad. It is keeping us from eating out with friends as that usually happens in the evening.
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Bob I am a Texas woman and live on a farm/ranch. I am having a hard time wearing oxygen in public too. Wish someone would come up with a less visible oxygen resource, I have a small inogen for things like grocery shopping but use a respertonics in a backpack for working outside.