Curious, too!

[grannymac08]

I'm 56 years old, and since 2006, COPD has been diagnosed, based primarily on clinical and PFT's.  Suddenly, this year, my PFT's took a plummet (FEV1 34% of predicted; FEV/FVC 89,(normal), TLC 48% of predicted, DLco 22% of predicted, and all the numbers point to a restrictive pattern - matter of fact, impression is 'severe restrictive disease'.  Numerous CT scans and xrays show linear parenchymal scarring, parenchymal opacities lower lobes, and finally, on an HRCT, "stable thick bands of pulmonary fibrosis in both lungs, mild ground glass opacities of multiple acini of the posterior left lower lob, worsening since prior (last CT in April, I think).  I have GERD, smoked from 19-52 years of age 1-2 ppd, had radiation to right breast (cancer 2001).  I have also suffered multiple pneumonias (or a series of pneumonias - of which some didn't clear up and just came back - we don't know, at any rate the last 'series' started in February, '08 and my last admit for pneumonia (6th) was end of July.  The doc came into the room that admit and mentioned something "we'll be talking about a lung transplant, probably U of M (university of michigan) as soon as possible".  When I got out, the HRCT and echocardiogram (normal) was ordered.  I also have sleep apnea, and am going to be using a new system - bipap ST, since neither CPAP nor regular BiPAP seems to work - I still have multiple episodes of apnea (77 in an hour?).  

Does this sound like idiopathic pulmonary fibrosis?  Or something else.  I need to know - not only due to my going crazy speculating and sitting on my hands :)  But...if it is, things have to start happening - evaluations to get put on the transplant list, possible 2nd opinions (I'll basically combine the evaluation at another institution with a 2nd opinion at that same institution - where I get the xplant).  A lung biopsy, if needed (and since the impression didn't come right out and say "idiopathic pulmonary fibrosis' we might need one? (It DID say 'thick bands of pulmonary fibrosis.."???).  I know scheduling these things take time, from sheer red tape to busyness of the clinics and waiting times to get into the clinics.  

Thanking you in advance, Dr. Tom.  Your answers to others have been very inciteful, and I'm looking forward to hearing your answer to mine!  If you see this before 9/1, have a happy holiday!

Gina


This discussion is related to Does This Sound Like IPF ?.

[lynnkay]

I am not Dr. Tom and I am not a healthcare professional. But, your post stood out to me. My mother had IPF. My advice is get that second opinion please. And if possible get that second opinion from the best pulmonary specialist you can locate. Some doctor talking lung transplant....well, that is upmost serious. Make very certain you have IPF. I am praying that you do not have idiopathic pulmonary fibrosis. They did perform a biopsy on my mother, but the biopsy was inconclusive. They could not figure out what caused mother's IPF. She was never a smoker, but did work around metal dust for years. Dozens of things can cause IPF. God forbide if you do have IPF, then yes evaluations need to be done to qualify for a lung transplant. They put the patient through many tests. They did my mother. She received a lung transplant last year. My brother and myself were diagnosed with COPD-Chronic Obstructive Pulmonary Disease. Not a good lung disease to have either. I am having a number of problems due to it. I had pneumonia and pleurisy last winter. Never had those in my life. I am getting sick more and more. And the shortness of breath can be very bad and scary. My sister-in-law who is a nurse, asked me if they have found fibrosis in my lungs. That terrified me. I go to the doctor next month. That will be a question I will have to ask him. I dread asking it. I had to respond to your post. I am not certain I helped you any. But, I understand your concerns and even fears. I hope you find the answers you are seeking. But please take my advice, on that second opinion. You are thinking right in getting that second opinion. So, you are on the right path. When I was told by my family doctor I had COPD last year, I did ask to be referred to a pulmonary doctor. I wanted that second opinion. When one doctor tells you that you have a serious disease, it is always best to get a second opinion. I will keep you in my thoughts and hoping for the best outcome for you.