IPF

[Rhonda2121]

Hi my name is Rhonda, I have IPF (idiopathic pulmonary fibrosis) officially diagnosed 3 1/2 years ago. I have a chronic cough, and terrible mucos in throat, sometimes unable to release. At times I must use a Kleenex and swab the back of my throat. Do others suffer with this difficulty?

[Lenocker68]

I have copd and I had a lot of mucus while I was a smoker. I can relate, yet I have none now. I vape throughout the day to open up my airways. The two treatments really work. Good luck to you my friend

[jenss]

Hi Rhonda, Mucous in the throat is not a symptom of IPF but may impact on IPF so you should see an ENT specialist. He/she will likely (depending on examination results) give you a sinus rinse to use twice a day for quite a while to reduce mucous production. You can then (hopefully) reduce the number of rinses slowly. Make sure you use the "sensitive" type salt to make up the sinus rinse so that antibodies etc in cell membranes are more protected. best wishesxxx

[sassy59 in reply to jenss]

Lovely to hear from you jenss. Best wishes to you. Xxxxx

[Granny56 in reply to jenss]

What is the sensitive type Salt?

Thanks

[Hidden]

G'day Rhonda

My wife had...Yes, had IPF until 15th July last year, when she received the "gift of life", a bilateral lung Tx...I have documented our journey from diagnosis in May 2014, so if I may be of any assistance please feel free to contact me..... if you are not already aware of this, understand that IPF affects suffers in different ways,...so what may assist one may not help another.......I myself have chronic bronchitus and suffer with the mucus problem and have found the best way of breaking it up and expelling same is to suck on a Fisherman's friend...the Original is rugged to the taste at first, but becomes tolerable after a few days, or you can use the Spearmint which is much milder...My wife also used Fisherman's friend to ease both the coughing and mucus...she obtained about 3-4 hours relief after sucking on one....hope this may help you...I will keep you in my prayers as you travel this rocky road... we call life......Snoopy

[Posative in reply to Hidden]

Snoopy I to have IPF and feel very scared I am now unable to eat lots of things but started getting sick now for no apparent reason,any advice please,best wishes to your wife and a long happy future x

[Hidden in reply to Posative]

G'day Posative....do you have family around you???...Susan used to put on a brave face, even in her darkest hours, for medical advice you need to speak to your GP, although if you are under a pulmonoligst it would make things much better.....Susan has feelings of wanting to vomit post TX...not so much pre.....We have found that in order to maintain as good a lifestyle as you can expect...most of the requirements are a healthy diet.....Susan is now on the Fodmap diet...you can find it here......ibsdiets.org/fodmap-diet/fo... Susan goes off it she gets sick...and at times we all need to have a break from rules...but for this we pay a price...........Best wishes

[Granny56 in reply to Hidden]

Congratulations to your wife on being given a second chance. I hope you will get many more happy years together.

I have recently been diagnosed with moderate PF Rheumatic cause?

Can I ask what criteria the doctors used to determine suitability for transplant?

[Hidden in reply to Granny56]

G'day Granny

Thank you for your well wishes. We reside in Australia, however i think the criteria is similar world wide.....Your DLCO has to be 40% or lower, there is an age limit and you have to pass an assessment test, here it is done in hospital over 3 days...In Japan it takes 2 weeks.

Re the age limit, I know at the Alfred hospital in Melbourne, where Susan received her new lungs, the age comes secondary to the fitness levels of the patient...Two main things a sufferer needs to do to keep the quality of life at an optimum is ...... A healthy diet and exercise...not running or walking long distances, but, controlled pulmonary rehabilitation exercises, under the control of a qualified pulmonary physiotherapist. I have documented our journey...As I believe that I need to "Pay it forward" to others who have found themselves in a similar situation...we had no one to give us the info and the hospital only told us what they wanted us to know....they rightly shielded us from full disclosure...with hindsight it was the right call...however there are some things we could have handled better if we had prior knowledge.. I notice in your message that your fibrosis has been identified..Susan's was not..but it makes little difference...just different meds....If you need to talk further I am only a keyboard away....GOD Bless

[mauschen in reply to Hidden]

Thank you, I was just curious.

I was only told my diagnosis over the phone a few weeks ago as I kept noticing that my lung function tests were demonstrating restrictive lung disease but my consultant kept telling me that everything was ok. Obviously not ok and now that he has finally admitted that I have a problem, I now await tests this month to find out the extend of the problem. I have many other health issues including diabetes and heart failure so I guess I'll be at the end of the queue if I eventually need a transplant.

Nevertheless, I am delighted for your wife and wish her continued good health.

Xxx

[sassy59]

Hello Rhonda, great reply from jenss eguvh l hope really helps you. Wishing you well. Xxxx

[sibkev]

i did before tplant not now but i never had mucos all the way throu onlt advice i can give you is keep walking it keeps it at bay longer

[Salmo]

I have IPF and have had these symptoms (excessive mucous and cough) at times. The symptoms were bad in the early stages of the disease and were greatly reduced when I went onto drugs and other treatments for treating gastric reflux (PPI, H2 blockers elevated bed, smaller meals etc). Might be worth asking your GP or consultant if that could be a cause in your case.

[Goto4]

Try gargle with warm salt water, I started this and found that it cleared the throat. I always had this problem, but it got lot worse with IPF

[Caspiana]

Hi Rhonda, 👋I'm sorry to read about your diagnosis. I don't know a whole lot about IPF but I was under the impression the cough associated with it is usually dry. So I am wondering if the mucus in your throat be is actually post nasal drip? If you have mucus streaming down the back if your throat I would see a otolaryngologist. It's a very frustrating thing to endure.

Best wishes to you,

Cas xx 🌿🌼🌿

I just noticed this post is four years old!! 😅 Hoping you are doing well Rhonda2121 .