Fibrosis - Lung & Respiratory Disorders / COPD Message Board

08-28-2001, 05:17 PM

My husband has an acute exposer to Calcium Oxide (lime) in December of last year and since then has had problems. Since the exposure he has been diagnosed with Reactive Airways Disease, and has a decreased PFT. His last test indicated a 8% decrease in lung capacity bringing his total lung capacity to 52%. Five months ago he had an x-ray and cat scan which did not indicate any abnormalities in his lungs. His Dr. has ordered another cat scan for tomorrow to see if anything shows. We were wondering how he could be having such an agressive decrease in lung capacity without any clincial findings on the cat scans and x-rays. We are so frustrated, the Dr. also told him if it continues to decrease at the current rate it is, he would not live for more than a year and would require a lung transplant. Has anyone ever heard of pulmonary function tests being this severe without any findings on the cat scans and x-rays. They want to do a open lung biopsy, but we can't figure out what they will biopsy without any definative mass to go after. Any suggestions from someone who may be going through anything similar, he is only 36 years old and we are worried....
Thanks

caregiver · 09-05-2001, 10:45 PM

I'm so sorry to hear of your husbands problems. My husband had two cat scans and x-rays more than I can count. Then he had a brochoscopy (sp?) Finally, an open lung biopsy. Like your husband, nothing showed definate in the previous tests, although the bronchoscopy show several carcengens. What the open lung biopsy showed was a lot of scarring in his lung tissue and it is spreading rapidly. The formal name they gave it was Usual Interstitial Pneuminitis or UIP, a subset of Idiopathic Pulminary Fibrosis. It does sound like there may be a direct link between your husbands exposure to chemicals and what he is going through. They can not find a link with my husband, and they cannot stop it. We are facing it day to day some are good and some are filled with tears. You have a long road ahead and I wish I could be more encouraging.

In answer to your specific question about the open lung biopsy, my husband was in a lot of pain for about 24 hours or until they took the chest tube out. After that he described it as very uncomfortable. I stayed home with him for about 4 days. I hope and pray they find something treatable in your husbands biopsy.

Good luck and keep us posted.

09-06-2001, 12:30 PM

I am so glad that you shared that information with us, we continue to go through ct scans and x-rays with nothing showing. It certainly sheads some light on what is happening. I am sorry to hear of the problems your family is experiencing. We would like to know what kind of treatment plan they gave your husband? And what may we be looking forward to long term? I know this is difficult for all of us, but we feel kind of lost. We are scheduled to go the Shands Hospital on Wednesday of next week, it is ranked 11th in the Nation for teaching hospitals, so we are hoping they can give us an acurate diagnosis. We are so worried as you can imagine. Take care of yourself and you will be in our prayers.
Peg

caregiver · 09-06-2001, 10:15 PM

I understand completely how you feel. It sounds like your husband is getting the best treatment possible, which is very important. It is also important that you TRUST your dr. This is a very hard disease to diagnose, please don't assume it's the same thing until you hear from your Dr. Please don't forget the your Dr works for you. Write down all of you questions, concerns, and expectations before you go and do not leave until you feel all your questions have been addressed. They may not have all the answers but they can at least address them.

They have my husband on massive doses of Prednisone, a very nasty steroid that is supposed to slow the progress of the disease, so far it's not working very well. His prognosis is not very good. With this disease they do not like to give you a time fram but if my husband continues to progress at the rate he is less than a year.

I have found this website extremely helpful as far as support, and being able to vent. Feel free to use it, you will find many in your same situation.

Stay strong!

You are in my prayers

rosalita100us · 10-10-2001, 06:05 AM

MY pft is actually a little lower with no explanation. They have done cat scans and xrays exc.
I did have asthma since a kid and they are figuring its due to undertreated asthma. Now I am on a very strongly pushed asthma med regimine.