Why has my doctor said nothing

Thx Eric. I am driving myself nuts. It was picked up on CT Scan when my Gyne booked me into hospital for a cystectomy. Now I'm only seeing her in 6 weeks again. I'm worried out of my mind.

OK, if your doc is hard to reach for whatever reason does she/he have a physician's assistant? Just bug the hell out of them. It is your life after all.

Also, I have three medical systems (hospital and a GI facility) and a lab that have online messaging. (They track your $ too naturally) They are accounts you have to set up, but I can see all my tests and results and, less often, the doctor's sumations. I communicate with my doctor's PA and it is pretty good for making a list of questions so you don't forget anything whenever you do get to have a real appointment.

Rene,

Thanks for asking.

I was diagnosed with fibrosis around June on a road trip. I got short on breath so went to ER in Reno. Dr saw it on an X-ray. I showed a copy to my GP. He sent it to a pulmonologist who said CPOD and then got a lung biopsy Oct 6 and idiopathic pulmonary fibrosis was confirmed. Biopsy was a really bad recovery for a couple of weeks. Weird, because thought that was going to be my permanent condition. Nope. I feel fine but for the oxygen hassle, a slight cough and some side effects from a med. I wash the dishes and the laundry, write a bit, read a bit and drive myself with my O2 tank on the driver's side. It works. But I still feel awkward in public places.

The real issue for me is that I am being tested, and tested a lot to see if I qualify for a lung transplant.  I don't want a lung transplant because of all the life changing regimes and hassles with meds and care taken to prevent infection and possible rejection of the transplant anyway. But I probably will, that is, if I actually get "the call".

So it goes.

e

I'm sorry to hear Eric. What is your age if I may ask. I'm 37 this year. Do you smoke? Can scarring of the lung bases just merely be from an old infection? How far has yours gone?

Rene,

Bear in mind that the understanding of "idiopathic" (meaning unknown cause or cure) pulmonary fibrosis is changing all the time. A lot of new drugs are being used in clinical trials. A lot.

I'm 67. The perfect age for a "baby boomer". But I am not one. Another story. I smoked for 30 years. I quit I guess over a decade ago. My GP says the 30 year mark is statistically right where the increase in lung ailments begins.

But remember the word idiopathic. They simply do not know if this progressive scaring was caused by smoking, exposure to chemicals (I was pretty sloppy with using volatiles wile working on my boat), or just genetics. I have seen two people hear the disease affecting parents and siblings at the same time. The "old infection" you refer to could be a cause too. One member of this group talked of her's being "caused" by GERD. Well, there is certainly what appears to be a correlation between the two, as I am having more tests on my esophagus next week. The docs are making a big deal out of that.

I don't know in percentage or stage where I am as far as progression. Good question. Strange I haven't been told and stranger I haven't asked!

Oh, by the way. IPF is categorized as a "rare disease". I always wanted to be considered special, but well, this is not quite what I had in mind.

Later,

es

Glad to see you still have some humor inside you. I am also from South Africa. I had pheumonia in January and wonder if it's not from that. I'm almost certain I have alkydosis spondylitis but not diagnosed. I'm thinking you should ask your pulmonologist what stage you are at and I'm hoping that should you be a candidate for a transplant that you will strongly consider it.

Hi again Rene,

I didn't mean to imply I'm from South Africa. I'm in the USA. You know, the country with the best health care system in the known universe - Not! Fortunately for me I am covered, but the politics here at this moment is absolutely frightening, if you are not up on it. More on that if you want.

Yes, I will find out about my stage of progression. I am, as you suggest, "strongly" considering transplant, and getting some good information from this group.

I still don't feel like I have enough real data insofar as there is very little, understandably, about those who have had very short lives after a transplant. This would be dependent upon the particular hospital's rate of success as well. I guess I'll have to make a matrix to work from as this is not instintual to me at all. Sound's rather counter-evolutionary doesn't it?

e