Pulmonary fibrosis on oxygen for 15 years.

[Allison24]

Pulmonary

[O2Trees]

Welcome Allison Are there questions you'd like to ask? I have copd not pulmonary fibrosis but there are people here who do have pulmonary fibrosis and can give support and answers questions.

[sassy59]

Hi Allison, what a lovely photo. Xxx

[Allison24 in reply to sassy59]

Thank you

[Allison24]

I also have sensitivity pneumonitis_what can I do allergic to chemicals

[Jessy11]

Hi Allison, a very warm welcome to the forum. I'm afraid I don't know about PF but I know some of our members have the same condition.

I'm sure someone will be along soon who can help you, if you have any particular questions.

Take care 🌷

[Hidden]

G'day Allison

Trust you are as well as can be expected.

My wife (Susan) has IPF and is on the waiting list for a D/L Tx. We reside in Australia.

If you need to speak to Susan about how she is handling it please reply.

Best wishes

Will

[Allison24 in reply to Hidden]

Yes that would nice I live in atlanta ga

[Hidden in reply to Allison24]

G'dy Allison

Susan wiould love to talk to you, at present time she is on the tread mill, so ,possibly in a couple of hours

Kind regards

Will

[Allison24 in reply to Hidden]

Thank you

[Hidden in reply to Allison24]

Hi Allison I have been diagnosed with IPF since May 2014.Unfortunately my disease was very aggressive and I lost 60% of my lung capacity in the first seven months. However during the last year it has been controlled with the use of chemotherapy (my last chance). I am on oxygen during the day but okay at night. I am happy to still be here as I am now informed I wasn't expected to live to February 2015. I am now on the transplant waiting list and am keeping myself as fit as I can. I have a treadmill at home which I use daily, even if only a few minutes then rest and back for a few more minutes. I also attend rehab clinic twice weekly. Becoming sedentary is the worst possible way to treat the body. Any muscle tone increases the oxygen available for the blood. I have had very bad coughing fits where I feel that I will drown in the fluid that pours out of my lungs and nose. For a year different doctors have tried various medications and finally I am now trying panadeine forte for the codeine which has finally worked. I have had three broken ribs from the violent coughs but since the panadeine forte these have ceased. I have never smoked, I walked, rode a bike, went to gym, yoga, ate healthily and still here I am. Occasionally I feel despair but I try to hide this as I am sure no one wants to be around a miserable person. Life certainly changes - I once walked for hours and thought nothing of it - now I am thrilled when I managed thirty minutes one day - usually ten minutes is my limit before I rest. There are good days and bad days and there is no reason why one day is better than another. On good days I exercise as much as I can. Keeping relatively fit is important if I want a successful transplant. I have been waiting seven months and as my lung cavity is decreasing and my strange antibodies I am told I need someone who is a maximum of 4'8" and probably had children or a transfusion in the past. ( I am 5'3" and had assumed I required the same height donor). This disease is a learning experience and appears to differ a great deal from patient to patient.

I have not seen your original post as it seems to have disappeared from the site, however, My husband, Will suggested I reply to tell you some of my story and let you know you are not alone. Until I was diagnosed with IPF I had no idea what this disease was or how bad it could be. I now belong to a support group which I have you have joined a group near you. It can be very helpful but also a reminder of the the different stages we go through as new members join and others disappear, usually to palliative care. Everyone will have a different journey but I hope we all have family to support us. I do, including my dog . Bless our pets - they help ease our problems. All the best Allison....Susie from Victoria, Aust.

[nansyl]

Hi Allison

I have PF and have now had it for 12 years. Several bouts of pneumonia etc. but managing to hang on in there. I do have oxygen at home but only use it a couple of times a day. I also find a hand held little fan helps when I get a bit breathless, but not enough to use oxygen. One thing that I do find is I have a tremor all through my body but when I mention this at the hospital they seem to ignore it. Do you find you have this, it is just like a trembling not just my hands but my whole body shakes! Hope you feel better soon.

Sylvia

[TheRecyclist]

Hi Allison

I also have Chronic Fibrotic Hypersensitivity Pneumonitis which is one form of PF. Yesterday was the fourth annniversery of my diagnosis. My lung function has declined over that period in a series of plateaus and I have been on ambulatory oxygen for the last few months. I have recently started on Mycophenolate in addition to 10 mg Prednisolone in the hope that my immune system will stop attacking me.

It sounds as if you are in long term remission. How are you coping with oxygen? What medications are you taking?

[Allison24 in reply to TheRecyclist]

I am not hoping very well,because the doctor recently that their is Nothing else they can do so I am trying to eat right and excersice to keep my strength. Up. But why do think I am in remission? Also have bronchetis.and suffer with lung infections monthly.

[TheRecyclist in reply to Allison24]

The prognosis for our condition (Chronic Hypersensitivity Pneumonitis) is the same as other forms of Pulmonary Fibrosis. That means we shouldn't expect to survive more than 3-5 years after diagnosis. I'm chuffed to bits to achieve 4 years so your 15 years is exceptionally good, unless I misunderstood your post.