Top 4 Words You’d Use to Describe IPF

[Dave]

Devastating – Unpredictable – Misunderstood – Terminal

 

[Charlene Marshall]

Certainly an accurate description, Dave. Thanks for sharing!

[Elle]

I was so traumatized, because my doctor who is also a Pulmonologist never told me that, I had Pulmonary Fibrosis. so something told me to ask for the results of my Ct can and when I opened the letter , I saw on my results that, I had :”pulmonary Fibrosis.” Now it has spread to my right Lung. So I am one of the unlucky one in which my PF is getting worse every day that goes by. I feel, alone, Lost ad helpless. These are my four words.

[Christine McCann]

Ask your pulmonologist to put you on Meds to slow the progression. You are not alone.

[Phyllis Della-Latta]

Incurable, debilitating, fatal, underdiagnosed,

[Charlene Marshall]

Hi Phyllis,

Underdiagnosed is most certainly (and unfortunately!) a good word used to describe IPF. Thanks for sharing.
Char.

[Jerry Genesio]

LIMITING – BURDENSOME – CHALLENGING – COMPROMISING

[Christine McCann]

Terminal. difficult, no fun.

[Charlene Marshall]

No fun for sure Christine. Thanks for sharing!

[Mary Jane Wallace]

Difficult breathing, persistence cough, difficult and terminal

[Charlene Marshall]

Thanks for sharing Mary Jane, I definitely agree with your word choices!

[Elle]

I feel the same way. But, if I may I would like to make a comment because I am curious to know if anyone else has similar symptoms to mine. I have developed severe  Gerd, so now even if i want to eat, nothing goes down. I vomit almost every single day. I feel unbearable and excruciating pain in my lungs / chest, because I keep cough for hours and hours. My legs are very swollen, I have a constant nasal drip. I feel tired every single day, Also most of the time, I can not sleep due to the pain, I am in. i have clubbing in both hands. I lose oxygen to my brain. So what is happening to me is very upsetting, In one of my many falls I fractured my nose and on the most recent fall I damaged my right knee. so, now I am in crutches. My doctor used to give me Tylenol #3 with codeine, and I have to be honest it helps tremendously with my unbearable pain, But now it is NOt just my lungs that are killing me but my knee feels as if it’s going to fall off.

[Charlene Marshall]

@ellebleu

Hi Elle,

Thanks for sharing your thoughts with us and contributing to this thread. I’m so sorry to hear of your experience with GERD too, how awful. Unfortunately, this is a common thing a lot of people with IPF deal with, and there have been some good forum discussions about it. If you look on the right hand side of the screen you’ll see a search bar. In that, if you start typing GERD or acid reflux, those conversations should appear for you to have a read through. I know its a pesky thing that lots of people deal with sadly! I appreciate your sharing and glad you connected with the forums.

Char.

[Christine McCann]

You need to see a pulmonologist AND A CARDIOLOGIST.

[Tonya Worley]

I had to get my throat stretched.

[Karen Martin]

Unpredictable, sneaky, cruel and relentless.

[Charlene Marshall]

Cruel and relentless are words I often use to describe IPF in my columns as well Karen. Thanks for sharing.

[Elle]

Hi Char ,

Thanks for repkying to me yes it’s not just the gerd, it’s the consistent high blood pressure, I am constantly getting dizzy which is due to lack of oxygen to my brain so, I am always falling. As, I have mentioned, I hurt my right knee badly. But , I am curious if anyone else has a pulmonologist that refuses to give cough syrup but prescription. My Gerd obviously got worse because of taking over the counter cough syrup. And I know a few that are given pain meds because as soon as I start coughing for eight hours straight the pain either it’s my back but I would say my lungs is just unbearable. JUst wanted some insight if anyone else with pulmonary fibrosis feels this much pain. Thank you. I have had already 4 different Pulmonologist’s and they are just horrible. The last one I had over the phone she never met me never heard my lungs with a stethoscope and insists I am coughing because of Scoliosis. So, I went to the Orthopedist and she told me no you have pulmonary fibrosis and the lungs are the largest organs and scoliosis is “the spine.” One thing has nothing to do with the other.

[Charlene Marshall]

Hi @ellebleu

Sorry to hear of the frustrations and pain you’re navigating. It seems unlikely that a 5th pulmonologist will give you answers that 4 already haven’t, but you can always consider a second opinion. I know some people who are prescribed pain meds, but its not common based on my understanding for those of us with IPF/PF. Not sure if you’ve explored this yet, but it may be worth contacting a Rheumatologist. Oftentimes lung conditions can be connected to autoimmune diseases… may be worth a try? Goodluck!
Char.

[Elle]

Hi Char thanks for writing back to me. Well from my end I know quite a few people especially when they are , I guess I don’t at the end of the line. I realize this is a terminal illness, and I truly hate how Doctors just don’t be more open on what to expect. I actually have seen many people mention here that they taCough Syrup like Promethazine Dm, and they receive pain killers because well the pstient has to be comfortable. I will probably see a rheumatologist but not here in corny New Jersey because I am moving back to Florida. I should be there already , but , I took a turn for the worse last week by the way. So , I feel that my pulmonary fibrosis has gotten a lot worse. Some people can go longer without “problems.” Unfortunately, I am not one of them. The reason why I saw 4 pulmonologist was because the first pulmonologist was also my doctor for 5 years and neglectfully didn’t warn me that I had Pulmonary Fibrosis. So I went for a second opinion. He told me that iit was a shame that he never told me anything that is medical negligence. And now I first only had it on my left lung and now it has spread top my right lung and it’s worse on the rt side, SO yes, I am so pissed but more hurt and disappointed.  But he retired the 3 rd is super far away for me and the 4th well she was a complete idiot, I told you it was only a phone consultation. First she said I had a large heart went to the Cardiologist he said no way, you are fine, it’s your lungs. Then she invents that’s it my scoliosis. Nope I had that since I was 12 it never caused me pain I was a competitive swimmer while in College when I lived in Brazil. Although , I am an American. and I did see a chiropractor and it was 76% and now it’s only 45%. So it’s  a lot better. It’s these doctor’s here. The thing is , I have to drive from here to Florida, I have my elderly Mom and my 4 pets. So, They are my responsibility , I want to make sure , I get my Mom out of here.  Sorry it took me so long to write. I barely get out of bed nowada

ys. So yes the pain is excruciating. I don’t know about you guys but , I can’t deal with this pain.

[Denise Stogdill]

I suffer from chronic pain.  I have fibromyalgia, rheumatoid arthritis, osteoarthritis and IPF.  I have a pain management doctor and he manages my pain with pain meds, topical pain lotions and lidocaine patches.  He is the best doctor I have had.  Find yourself a pain management doctor that will work with you to understand your pain. I hope this helps you.  God Bless????!

[Charlene Marshall]

Thank you for sharing Denise, it’s always refreshing to hear of positive experiences with physicians and how they can help us on our journey. Sorry to hear you’re dealing with pain, but glad you have a good doctor in your corner.

Take care,
Char.

[Christine McCann]

Elle, I find your difficulties with your pulmonologist very disturbing. If your IPF is bad you don’t want to live in Florida , too hot,& humid for anyone with lung issues . You need to find some better Dr.’s. People like us need to live at as low an elevation as possible with very moderate weather IE. not too hot , not too cold,. there are med’s that slow down the progression of this disease and a lot of support and info from the providers of Esbriet, CVS specialty pharmacy (not the regular CVS pharmacy) and 1st class medical thrive web sites, there are classes and webinars. Gerd can be one of the causes of IPF, Probiotics are necessary, you can get them over the counter but pick a good one, If you had a good Pulmonologist he/she would be advising you of all of this. Try talking to a CVS specialty Pharmacist or better yet google Esbriet, lots of info there. Make some demands on your Dr. if you can’t ind the results you need. Good luck you don’t need to suffer more than what this condition already brings with it.

[jin jue]

Outside of my immediate family, I do not tell others I have IDF or a terminal condition.  So my answers may not be what you are looking for.  I explain my condition when exercising or playing sports

1) Extreme shortness of breath

2) bad lungs

3) Just need to rest to recover

4) Coughing due to lung problem

[Rod Danner]

Smothering, progressive, incurable, and terminal.  It’s certainly not a pretty picture.

[Charlene Marshall]

Thanks for sharing Rod.

[Elle]

Rod , I couldn’t of said it better….Thank you.

[Annette]

Sneaky, serious, unpredictable, frustrating

[Charlene Marshall]

Definitely frustrating! Thanks for sharing, Annette.

[Chris]

Daunting
Repressive
Relentless
Exhausting

[Charlene Marshall]

Thanks for sharing Chris!

[Ron]

Curse. Debilitating

 

[Charlene Marshall]

Thanks for sharing Ron!

[Jeff Taylor-Jackson]

1) Depressing

2) Horrible

3) Tiresome

4) Frustrating

I added (4) because I dont see any cures on the horizon.

Stay positive though everyone!!

[Charlene Marshall]

Thanks for sharing your thoughts with us, Jeff. So important to stay positive as you say and I am watching for a cure on the horizon as well. Too many people have suffered from this damn illness!

[Linda Maguire]

Breathlessness

Cough

Frightening

Overwhelming

[Charlene Marshall]

Thanks for sharing Linda. I certainly agree with you!

[Bert Maidment]

Relentless cough

Scary shortness of breath

Overwhelming fatigue

Life stealing no cure

BERT

[Charlene Marshall]

Thanks for sharing your thoughts with us Bert.

[Steve Dragoo]

Mine are: Just another thing. (Oh, wait that’s only 3 words…)

[Charlene Marshall]

Love your attitude about this disease my dear friend, Steve. We have a lot to learn from you!
Hugs,
Char.

[denise anton]

Sad, challenging, frightening, & fatal.

[Charlene Marshall]

Certainly agree with your choice of words Denise. Thank you for taking the time to share with us. Know we’re here for you!
Char.

[Paul B ~ Lakeland]

Reflective
Unknowns
Limiting
Mindfulness

[Charlene Marshall]

Thanks for sharing your top 4 words with us, Paul!

[Gordon B Sandmire]

Exhausting

hopeful(for a cure)

debilitating

acceptance

 

 

[Charlene Marshall]

Thanks for sharing your 4 words with us, Gordon! I too am hopeful (for a cure). Take care, Char.

[William Kracke]

Lungs Turning Into Leather.

Not really accurate but gets the general concept across.

Bill K.

[Charlene Marshall]

Thanks for sharing your thoughts with us William! That is an easy visual for others to understand how difficult this disease is for us.

Char.

[Ann Chafin]

Puzzling

Energy-sapping

Constraining

Challenging

[Charlene Marshall]

Couldn’t agree more with your word choices, Ann. Thanks for taking the time to write us and contribute to this thread.
Take care,
Char.

[Amy]

Bewildering, frightening, unpredictable

[Amy]

Oh and sucky.

[Charlene Marshall]

Great word choices Amy, I’d certainly agree with you!
Char.

[Terry Quinalty]

Chronic, irreversible, ultimately fatal.

[Charlene Marshall]

Good words, Terry! Hopefully soon we can remove the “ultimately fatal” descriptor for IPF because a cure will be found. I’m just praying for that day!
Take care,
Char.

[David S]

disappointing

debilitating

punishing

cruel

[Charlene Marshall]

Hi David,

Thanks for contributing your words to this topic thread. Cruel is one word  I often use to describe IPF, so I certainly agree with you! Thanks for sharing.

Char.

[Denise Stogdill]

UNFAIR, EXERTING, TROUBLESOME, EXASPERATING

[Charlene Marshall]

Absolutely unfair! Great words Denise, thanks for sharing!