Patricia Meadows
Forum Replies Created
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Hi Malcolm.
I was diagnosed with PF from an autoimmune disease (which is still not identified) back in April, 2013. Every day I cough and have to clear my throat frequently. I hate it, but am also aware that others might find it annoying and a bit alarming (esp. since COVID!). I live in a concrete-construction apartment building, and so far have had no complaints. I have post-nasal drip which contributes to the need to clear my throat, and year-round “environmental allergies” according to my allergist, so take an antihistamine every day and use Flonase or a generic nasal spray, which seem to kick in a couple of hours after I take them. That way I feel OK about being around others, especially in public, because I am not coughing and clearing my throat as much as I do early and late in the day.
Best wishes, and hope that helps!
– Patricia
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Hi Harold.
Just for the sake of others who might want to read the stories, here’s the link:
https://pulmonaryfibrosisnews.com/make-every-breath-count-samuel-kirton/
If you have found another link please let us know.
Regards,
Patricia
pulmonaryfibrosisnews.com
Make Every Breath Count <span>— Samuel Kirton</span> – Pulmonary...
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My “credentials” re PF: I was diagnosed with autoimmune PF in 2013, and my boyfriend had a lung transplant four years ago. Something he finds helps enormously with the cough that was interrupting his sleep is not lying completely flat in bed. He has a remote-controlled mattress and raises the head just 3 – 4″. A less pricey option is a wedge that can be put under the mattress to raise it, or just a firm pillow or two to raise the head and the chest.
Not having good quality or quantity of sleep can sure affect our quality of life. Hope this helps.
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Hot moist air doesn’t agree with me. It makes me feel suffocated. Occasionally when I’m washing pots and pans I have to step back while running the hot water to fill the sink. Some members of my PF Support Group feel better when the air is humid, others don’t. I cough a lot from post-nasal drip so take antihistamines year-round. The allergist I went to said I have “environmental allergies”. When I’m in the country I cough much less; as I get into the city the post-nasal drip starts again and so does my cough and need to clear my throat. Embarrassing if I’m in the company of others, but they understand I can’t help it.
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I definitely wear a mask when I’m in close quarters with others in grocery stores, the weight room at the gym, etc. I don’t wear a mask when I’m walking on the track at the gym because there aren’t many people using it when I’m there. When out for a meal at friends’ homes or a restaurant, or entertaining at home (always groups of no more than 8) I take a leap of faith and go without a mask. I have auto-immune PF and my boyfriend had a lung transplant four years ago, and everyone in our circle knows and respects that they can’t be around us if they have “just a cold” or any other contagious illness.
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Hi again, Gavin.
You might also want to look up https://pulmonaryfibrosistrust.org/ which is the UK organization. The US site is extremely helpful too: https://www.pulmonaryfibrosis.org/.
Best wishes! – Pat
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Gavin, have you looked for pulmonary fibrosis support groups in your area? I have found being in the company (in person or via Zoom) of others who are living with PF to be extremely helpful. Plus we usually have a speaker who understands and treats some aspect of PF such as exercise programs, physiotherapy focused on breathing, eating well, etc. Very best wishes from Calgary, Canada.
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Our support group asked the organizer to have someone come in to speak to us about what it is like to die from PF. We were fortunate to have the head of palliative care in our province (Alberta) address us. It was one of the best-attended meetings we’ve ever had. Despite the fact that talking about death is difficult and uncomfortable for many, the speaker’s message gave us the reassurance that at least here in Alberta, those dying from PF are 99% likely to pass away gently and without the panic and gasping that we might envision (and sadly, may have witnessed). Morphine and/or hydromorphone can be used here to deal with the possible sense of breathlessness or panic that some suffer.
It is always terrible to hear about someone dying in great discomfort. It’s so awful for them and their loved ones. Both my parents died from lung disease related to smoking (Dad had emphysema; Mom had lung cancer). I was blessed to be with them when they died, and in both cases they fell into a deep sleep, then a coma, with one last exhalation and they were gone. No distress, no gasping or struggling for air. I wish everyone and their families could have a similar experience.
If you have access to someone in the medical field who can talk to you about the end stage of PF including the dying process I would urge you to do so earlier than later. As I said, a lot of us in our support group got comfort from what we heard, and now are also better equipped to advocate for our selves and our loved ones for a better experience.
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I would have replied sooner but just now saw your post. When I was first diagnosed with PF my nostrils were over half full of dry scabs which only added to the stress of finding it hard to breathe. My doctor sent me to a wound clinic where the nurse said (off the record) that I could pick off the scabs, then smear Vaseline in my nostrils. Within two weeks the scabs were gone, and for the last eight years I’ve been smearing a little Vaseline in each nostril before bed.
HOWEVER, I realize Vaseline CANNOT be used when a person is on oxygen. As Iris mentioned, Secaris is a water-based lubricant/moisturizer. It’s quite expensive if you’re going to use a lot, so a much cheaper alternative (and essentially the same product, also water-based) is KY Jelly. Yes, the “intimate” lubricant. Just make sure you don’t buy a tube of the “tingling” or any other variety. Make sure you buy the plain one with absolutely no perfumes or other “enhancements”. I found KY Naturals Extra Moisture 100% Natural (did they mention that it’s natural??) priced at $16.99 CDN for 100mL (about 3.5 ounces). Compare that to 30g (about 1 ounce) of Secaris for $8.99 CDN.
I really feel for people with the crusty nostrils and hope that those on oxygen and not can benefit from my experience. It’s sort of gross to start picking away, but I’m so happy that I don’t have that to deal with any more.
Good luck!
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For the Canadians like me in the crowd, here’s a link:
https://www.canada.ca/en/public-health/services/diseases/coronavirus-disease-covid-19.html
Stay well, everyone, and Merry Christmas!
Patricia
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Hi Ron.
Funny you mentioned scrapes and cuts becoming infected. I haven’t had any infections, BUT I’ve found that wounds heal much more slowly in the last seven years, including the last three since I’ve been off all meds.
I love dairy products. In addition to drinking lots of milk, eating cheese (and taking a calcium supplement while I was on Prednisone), I have been lifting weights for about 34 years and walk a lot so that has kept my bones in good shape. I’m 65 and am aware that as one ages, bone health is harder to maintain. With not being able to go to the gym during COVID-19, I’ve been improvising with various things around my home to still do some lifting. I’m also on hormone replacement therapy and am sure that the estrogen helps my bones.
Like you, Taleena, I had a very strong feeling of hunger which lasted for about three years in my case. It’s pretty hard to ignore and I sympathize with you and everyone else who has to struggle with significant weight gain. A friend gained 65 pounds in 9 months when first on Prednisone. That was 14 years ago. She ultimately gained over 100 pounds, but the good news is that in the last year she’s lost 30 pounds and is down to 7mg of Prednisone. Both my friend and I have PF from an auto-immune disease, not idiopathic PF. Our respirologist here in Calgary doesn’t usually prescribe Prednisone to people with IPF, just PF.
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Immediately upon diagnosis of PF from an as-yet-unidentified autoimmune disease in April, 2013 I was put on 50mg/day. I read the information sheet and when I saw that weight gain is a typical side-effect, I decided to pay strict attention to what I ate. “Mindful” eating really helped me. If I was out for a meal I would eat half of what was on the plate, and took the rest home to eat the next day. At home I put a serving of food on a plate and that’s all I ate, despite the fact that for the first two or three years of being on Prednisone I felt hungry ALL the time. I might have gained 5 pounds, but that was good since I’d lost 15 pounds prior to being diagnosed (went from 130 to 115 lb) because I was so sick I couldn’t eat. I also got hair on my face and on the back of my hands. Although I finally got off Prednisone in June, 2017 to this day I still can’t sleep without a sleeping pill, although I’m down to half or a quarter of Zopiclone per night. At one point I had to take 1 1/2 pills to get any sleep. On two occasions I didn’t have any Zopiclone so was awake for 42 hours straight one time, and 36 hours the other. It’s a challenging drug but in my case, a life-saver. There were many more side effects including become very hyper and “wired”; thinning hair; heartburn; unsteadiness on my feet; ringing in the ears; loss of sense of taste or metallic taste in my mouth; lack of impulse control; and others.
I also had Retuximab by infusion a couple of months after diagnosis and it, along with the Prednisone, seemed to really work. Very best wishes to everyone on this journey!
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Hi Allan. Such a pity that something you enjoy (singing) plus something that we need in our everyday life (speaking) is affected so much. I took a short course in voice acting a few years ago. The instructor said that eating a Granny Smith (or probably any) apply seemed to help people avoid clearing their throat or coughing. Just a piece of folk medicine, but it might help you.
Best wishes,
Patricia (Calgary, Alberta, Canada)
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Doug, just click on the words in blue in Charlene’s post (“important role in lung fibrosis”) and it will take you to the article.
– Patricia