New diagnosis and terrified! Idiopathic Pulmonary Fibrosis

[Jennsmum]

Had a CT scan for an unrelated condition (ironically fine!) which picked up abnormality in lungs. High resolution CT confirms have idiopathic pulmonary fibrosis. I’m generally well - some breathlessness on exertion which I put down to age (63) and being a bit overweight. To suddenly to told I have a life-shortening illness with no effective treatment, has come as a total shock. To have pulmonary function tests then go back in SIX MONTHS, so they can assess how much I have deteriorated.

I’m a nurse and don’t lie down to things, I’m a fighter. Have been doing some research and find that there are medications which can slow down the progression.

My questions are -

Does the £26k a year cost of treatment have any bearing on why I’m told “there is no effective treatment “

Why have I been left in limbo for six months???

What can I do?

[jmsutt]

During diagnosis process to discover reason of oxygen drops, IPF was mentioned to me as one possibility. When I asked about treatment, I was told that there were two relatively new meds then on market to slow progression of IPF, but they would not be recommended as they have undesirable side effects....nausea, diarrhea. There is a possibility of having lung transplant if one is still young enough (I would not have qualified due to age .) Stem-cell transplant is on its way, but has not been perfected, yet. My understanding is that there are a couple of places that offer it now, but it is still too sketchy for me personally to consider. Others here will have much better information. After observation of HRCT scan from three Pulmonologists, I was told that my issues were not IPF, but bronchiecstasis, mild emphysema, and mild volume loss in baseofboth lungs are causing oxygen drops. I avoid crowds, wipe all cart handles,, etc.. Never give up! Treatment progress is ongoing, so everyday is a cause for hope that a new treatment will become available. All best wishes. J

[Jennsmum in reply to jmsutt]

Thank you! I fall outwith the age range for transplant sadly. Yes, I’ve heard of the side effects, but surely worth a try?

[jmsutt in reply to Jennsmum]

I am in U.S... At my age, 76 in a couple of months, quality of life takes priority, I am on oxygen when walking far or fast, and when sleeping, and I enjoy getting out and about for lunch and shopping with my friends. At your age, and in otherwise good health, here you would still be age wise a candidate for transplant. Since this was so completely unexpected news, I would imagine that you were stunned to hear this, and would probably benefit much from an immediate return visit to your doctor, taking with you a list with every question you might think of to ask. All good wishes, J.