IPF

[Adela123]

Hi, my name is Adelaide and was diagnosed April 2016 with Pulmonary Fibrosis. My Dr. Sent for a lung transplant evaluation but I was not a suitable recipient due to several health issues. So I take it one day at a time. I have 2 Dr.'s one in NewYork City and one here in the Hudson Valley. I will be starting a new med Celcept and hopefully get off prednisone. My children and grabs-daughter have been very supportive and have to all Drs appointments. My husband gets very queezy at the Drs so he does not go.

[Katinka46]

Good morning, although it won't be morning for you. Welcome to this forum. You sound to be a very brave woman. IPF is a horrible disease, and I am sorry that you are not suitable for transplant. I have no idea about medications for IPF, some over here are on Perfenidone (spelling?). I think there are new things coming along all the time. Presumable the meds are to prevent or stop the increasing scarring? You have good family support and that makes huge difference. And your doctors seem to be doing the right things.

All the best

K x

[Hidden]

Good morning Adelaide,

A warm welcome to our Site. You will certainly receive amazing and friendly support from our members on here, and helpful answers from those who understand your condition. I hope your new medication will be enormous help to you.....I don't think many like prednisone but it can be a necessary evil. Your last sentence made me smile....we don't need confirmation that we are the stronger sex but your husband has just reinforced it........................heh heh.

I wish you all the best

x

[Adela123 in reply to Hidden]

So true

[Billybob10]

I'm still around after being diagnosed with IPF 6-8 years ago.I would recommend checking out Buteyko breathing.Be positive.You can help yourself much more than you might think.The experts are not infallible in their knowledge of this ailment,thoug they are very good in trying to help.Good luck.👍😃

[Adela123 in reply to Billybob10]

Thanks for the positive thoughts

[Posative in reply to Billybob10]

Billy what is Buteyko please as I am always searching for things to help me

[Billybob10 in reply to Posative]

Hi 'condemned'(please choose a brighter title:-).

Buteyko is the name of a Russian man who promoted this approach to breathing which is proving to be helpful for many lung problems.There are many books on it now.It's not hard to do but it has changed my life.Think positive and do it NOW!

You can take control.I've done it! Good luck!

[Posative in reply to Billybob10]

Thank you for that I will look it up (what do you think of bright eyes)lol

[Billybob10 in reply to Posative]

Much better

Life is good.The alternative is not.

Be positive.

Rock on!

[Posative in reply to Billybob10]

Billy thank for the poative messages, can you tell me how to change my name,I was in a bad place when I put that name up just been diagnosed

[Billybob10 in reply to Posative]

Hi brighteyes.I think you can go to the Help site for advice on name change.Mental attitude is crucial to get you through this.New drugs have been found which slow ipf down a lot.Ask about them.Good luck with it all.😃👍

[Posative in reply to Billybob10]

Thanks Billy take care

[Hidden]

Hi. Sorry you can't have a transplant and hope the new medication works well for you. I'm glad you are getting some support. Good job your husband isn't the one who is unwell! I look forward to hearing how you are getting on. Take care.

[velvet55]

Hello Adela

And welcome.

You will find lots of support here from the wonderful friendly, knowledgeable members.

Look forward to hearing from you again.

xx

[Hidden]

G'day Adelaide and welcome to the 'Family"

So sorry you needed to find us but glad that you did.

My wife, Susan, was diagnosed with IPF in may 2014, and we have "run the race" and received the "gift of life" on the 15th July this year. A bilateral lung transplant.

We reside in Australia and during our frequent trips to the hospital for regular check ups we meet many who are suffering with this "beast" of a disease, some on the wait list and others who do not qualify due to other medical problems.

The one thing they all share is their hope and belief that a cure will be found. And more importantly is their will to endure and live their lives to the fullest.

The prognosis, if you will believe what is written on the net, is not good, but in many cases is incorrect.

We have met people who have been battling with lung disease be it IPF, COPD,just to name 2 of the list, for many,many years and they are still with us.

All agree, keep a positive attitude, stick to a healthy diet, and most importantly..... exercise.

No... not running or swimming , but exercises controlled by a qualified lung physiotherapist, designed to keep your lung function as good as can be.

If you are not already in a rehab exercise group, ask your Dr to help. He/she should know of such a group in your area.

Lung fibrosis does not necessarily mean an early end to life, providing YOU are prepared to look after yourself.

A lung function test (Spirometry) every 3..6 months will show how your lungs are coping and that the meds you are taking are helping.

Please use this forum as there are many who can give you good advice

Will

[Adela123 in reply to Hidden]

Thanks so much for the info

[Hidden in reply to Adela123]

You are most welcome

[deedee5 in reply to Hidden]

Hi, Appreciate your reply, and since you said that you have met with several people who have different lung diseases like copd, pulmonary fibrosis and ipd etc. My question is what is the difference between ipf and pulmonary fibrosis. I just cant get a decent answer from my GP. I WOULD think that because lung disease is diagnosed in stages, one would be worse than the other. THANK YOU,

[PastMeBest in reply to deedee5]

Hi deedee5 the only difference between the IPF and PF is the 'I' which stands for Ideopathic which means 'cause not known'.

I was originally diagnosed with Ideopathic Pulmonary Fibrosis but it was later found to be caused by my immune system for which I am receiving treatment for. Because the cause is now known I now have Pulmonary Fibrosis.

Strange why your own Doctor couldn't answer your question.

I hope I have answered your question to your satisfaction.

John

[deedee5 in reply to PastMeBest]

Thanks John for your answer. I do understand now. My Dr. does not want to take the time to answer questions such as this one. Most of all that i know is from the net, not him. First he said I had COPD, but marked on my medical history Pulmonary Fibrosis. When I ask what stage, he says, it does not matter, as long as I feel ok. It matters to me, especially when I try to explain my symptoms. He makes light of everything I say. I feel that I should change Doctor soon.

[Hidden in reply to deedee5]

G'day DeeDee

IPF is Idiopathic = No known cause

PF = Cause has been determined

Within PF there are numerous known and uncertain causes.The Dr's are becoming better at identifying these.

Susan's case was IPF and later it was believed that it was a very rare form of PF. The debate between the pulmonary Dr's was about even Half said IPF and the others PF.

The only difference that I can tell is that with IPF you have a better chance of being used in trial drug use.

The disease's progress is monitored by spirometry (Lung function test) and if you can keep harassing your Dr to organise one every 12 weeks this will give you a good idea of how your lungs are functioning. But beware that if you have a spirometry whilst feeling "off" you will get a false reading.

We kept all our tests, we obtained these immediately by asking the scientist (That's what they like being called) who conducted the test.

The three things you need to check are

FEV1 = Forced exhale in 1 sec

FVC = Exhale taken over 8 secs

DLCO (sometimes called TLCO)

The DLCO is the main one for Fibrosis sufferers. It is shown as a %

70% means that your lungs and the lung cavity have shrunk by 30%

In Susan's case her DLCO was 20% meaning we needed the lungs of a young child about 4'8" tall. Susan is 5'3" but with the shrinkage we needed someone smaller.

Hope this info may assist you.

GOD Bless

Will

[piping]

Hello Adela...welcome to this very warm supportive group...welcome fro me from Australia.As you can see we are everywhere.

[Hidden in reply to piping]

G'day Peter

Hope you are still your cheery self??

I was going to ring you as we went to the Alfred on Monday, but with the weather being very nasty I opted not to.

We go back in 3 weeks so I will let you know in advance and maybe we can catch up.

Will

[piping in reply to Hidden]

Hello Will . ..so nice to hear from you! Isn't the weather atrocious. .where is Spring?I too have been staying in a lot and using treadmill , push ups etc.

Hope all is going well with you and Susan . .please pass on my love and good wishes .

Look forward to a catch up whenever you are able !

Cheers . ..Peter .

[Hidden in reply to piping]

Thanks Mate

I will be in touch

[Hidden in reply to Hidden]

G'day Peter

We will be in the Alfred on Monday morning if you would like to meet up for a cuppa

[sassy59]

Good wishes to you Adela and hope you continue to get good support from doctors and family. Xxxx

[Jaynair]

Best wishes to you Adela, you'll find lots of friendly support here x

[Tee1008]

Hi Adela, it's nice to meet you and welcome to the forum. xx

[Nanaeal]

Hi and welcome.

[Hidden]

hello adela and welcome to the forum.glad uve got good family support

best wishes

[Patriciapotts]

Hi adela123

Here in England I am under the care of The Royal Brompton hospital in London & I , like you have IPF + , but to help you, I have been on Cellcept now 4 months and the difference has been a plus although I still take a small amount of prednisolone as well.

I have had Nil or very little poor side effect from taking Cellcept. With it you must take azithromycin, a type of antibiotic.

So if your offered it do try it

Good luck.

[Grampy16]

Hi I also have pulmonary fibrosis along with several other illnesses and am not a candidate.I have been on a medication called Esbriet that I take 9 capsules a day and have just started taking 2 new medicationsfor the fibrosis in the hopes that they slow down the progression of the condition as it has progressed over the past 2 years. We live in Massachusetts

Good luck

[Hidden]

Hi Adela my hubby has had Ipf for the last 2 yrs. he's stable at the moment and it's not progress ing as fast as his doctor thought he would. At 71 he's to old for a transplant but will take the drugs when offerered. He has 2 inhalers. He still works. I'm glad you have support and excersise and a good diet is important. We have family in Long Island, cresswood and New Jersey. I hope the new drug works for you. Best wishes xx

[Nahja1241]

Hi Adela, This old system has gotten really bad, we might live longer, but not with the quality of life we desire. I too suffer from a few health issues, the worst being heart disease that brings with it sun-dried other complications.My cough is the worst, as it disrupts my intire existence . Let us just say we can bolster each other and always find good things to contemplate. I use a Web site JW.org and find there wonderful promises from our creator. Best check it out for yourself. With much caring..... have a good day. ahja1241.

[2pray4us]

Hello Adela123, my name is Kim ( 2pray4us). I know that you are fearful of your situation, as we all are, I have stage 4 severe copd. Its a hard pill to swallow but we have a God that makes the impossible possible, so this is where you put your heart and trust. He gives man the knowledge to make new medicines for cures all the time so never give up hope. Be prayerful, patient and trusting and live everyday with gratefulness and smile as often as you can. Let nothing that God can fix steal your joy! Have a blessed day, I will be praying for you. P.S. also check other doctors in other areas

[Maureenpearl]

Hello Adela,

I was diagnosed in 2006 with Lupus and in 2007 I was told it had damaged the base of my lungs (pulmonary fibrosis). I did ask if I would be a good candidate for lung transplant and was told yes. I never did anything about it because I have so many other add ons that I'm sure I would be turn down if I was to go for the test.

I use ambulatory oxygen and I manage to travel and go on vacations abroad (cruising).

I have been on prednisone since 2007 and have various drugs to stop the inflammation spreading in my lungs. At present I have been having Rituximab infusion every six months. I don't think it has helped with my breathing, I still have to use the oxygen but it does help with the pain and for a few months if feels like the lupus is in remission.

Please do not let it get you down, I haven't.

God bless

Maureen 🙏🙏💐💐❤️

[Peterhogg70]

What is celcep please.

[Adela123]

I am really sure what it is but I believe it suppresses your immune system pretty much the prednisone does but has less side effects?????

[Patriciapotts]

'CELLCEPT 'made by ROCHE is the trade name for MYCOPHENOLATE MOFETIL Some folk refer to it as MMF.

[michael86]

you have my sympathy ,I have bullious emphysema (dissapearing lung tissue)no cure just waiting to die.So be brave and just take it one day at a time.God bless and be strong

[perkyme]

My husband has IPF and has just started on a drug just out of trials called OFAV. It is supposed to stop the progression by about 50% Have you heard of it?

[mrsmummy in reply to perkyme]

Hi. Welcome to the forum. As your question is about something different you will get more responses by starting a new post. Just click on 'Write a Post' (top right).

[benji08 in reply to perkyme]

This medication is called Ofev otherwise known as Nintedanib. Together with Pirfenidone/Esbriet these are perscribed for people suffering from moderate IPF.

In the U.K. moderate IPF are those sufferers whose FVC range is between 50 to 80%.

I have been taking Pirfenidone since July 2013 and my tolerance is good, both medications have side effects and need to be covered by a Liver function blood test every 3 months.

All the best

Michael

[julierad]

Hope life smooth for you still. 3 years ago are posts I read. This is very helpful to read about others to learn about ipf.

This summer June 2019 at my 81st birthday I was diagnosed with ipf in addition to the emphysema copd. My lung doc wrote scrip for prednisone. Helps when cough etc gets really bad, especially when summer allergy’s exacerbate. Chicago weather is so variable. Hope someone out there can reply.