Pulmonary Fibrosis.new test results

Post
Kathyfl

09/06/07
    I was dx;d in April with pulmonary Fibrosis and decided in August to go for a second opinion. The numbers below are from tests I have had, this doctor wants me to go right away to Shands and try to get listed for a transplant. I could really use some advice. Are my numbers that bad?


August 2006
Spirometry..post bronchodilator FVC 50% of predicted. FEV1 pf 57% of predicted (1.80 and 1.52 respectively), ratio of 84%. Total lung capacity of 4.13 liters. 78% of predicted and residual volume of 123% at 2.44 liters. Diffusion rate 32% of predicted, adjusted for hemoglobin. Flow volume showed a restrictive contour. Moderate to severe restrictive defect with severe reduction in diffusion capacity.


April 2007
PFt showed FVC 1.72 liters 52% of predicted, FEV1 of 1.11 liters 42% OF predicted. TLC OF 3.12 LITERS,59% of predicted, RV of 1.40 or 70% of predicted. Diffusion capacity 33%. Flow volume showed a restrictive contour.

CT of chest shows extensive fibrosis, predominantly peripherally as well as the lower lobes with also some evidence of honeycombing in the lower lobes bilaterally, Right heart does not appear to be enlarged. There does not appear to be any lymphadenopathy.

I was put on O2 24/7 at 2 liters.......in April of 2007. I just got this report from a pulmonologist who we went to for a second opinion. He has referred me to Shands to discuss transplant and my file is in their office right now to see if I might be a candidate. I am looking fo any inpot to helo me understand what all this means.
Thanks Kathy  

[National Jewish Health]

The pulmonary function tests and the CT scan are consistent with the diagnosis of idiopathic pulmonary fibrosis (IPF), commonly called lung scarring of unknown cause.  This disease reduces the volume of the lungs, makes them stiff and reduces their ability to supply oxygen to your blood and tissues.  It is a progressively worsening disease.  The current pharmacologic treatment of this condition is generally unsatisfactory but lung transplantation is a viable option.  Please read our interstitial and fibrotic lung disease information at http://www.nationaljewish.org/disease-info/diseases/rheum/ild/index.aspx to learn more.

In addition, there are ongoing clinical studies of pulmonary fibrosis at the National Institutes of Health (NIH) http://www.nih.gov/ and other academic medical centers.  You should ask your pulmonary specialist about these studies.

This is a difficult illness to live with.  We hope you are accepted into the transplant program.  Good luck.

[Kathyfl]

I am hoping that someone will respond to this, I am really worried.


Take care,
Kathy

[naniagui]

My mother suffers from this illness too.  I would ask to get your battery tests for lung transplant as soon as possible.  I am in the process of taking to doctors to have this done for my mom.  I also enrolled my mom in a rehabilitation program, you should consider that as well.  

[barking]

Hi, I was diagnoised with IPF two years ago. I just had a new PFT and I do not know what they mean.FVC LITERS 4.91 UNDER HEADING REF, PRE MEAS, 2.83, PRE % MEAS 2.83 ,POST MEAS 3.00, POST % REF 61, POST % CHANGE 6
FEV1 3.67  2.19  60 PRE%REF, 2.46,  61 POST%REF, 12 POST% CHANGE
FEV1/FVC % 72  78  PRE 0 POST 82 POST % 82

TLC 7.24  3.53  49%

DLCO 30.4  12.0  39 %
I WAS TOLD 2 YEARS AGO MY ONLY CHOICE WAS A LUNG TRANSPLANT. I AM 53 YEAR OLD MALE. My O2 level at complete rest is 93% with a pulseOX meter. When I walk a
little or lift something my O2 goes down to 76 % with high pulse of 130 or above.
I was told the outcome of a lung transplant was 10% die on the operating table, and that 40% die the first year, the other 50 % make it about 4 years. This does not sound so great. How long do I have if I do nothing.