Meeting with Lung Doctor on May 21, 2010

OK, the doc seemed to have a sense of urgency about all of this. He said, Interstitial Lung Disease is when the Interstitiam (the microscopic fiber network in the lungs that extract the oxygen and put it in the blood) has become much thicker than it should be so you have trouble getting enough oxygen your blood. OK, what exactly can it be: Heart leaving water in the lungs so it could be a heart problem; Cancer; Infection, but since I was on a Z pack in the
past month he said this is unlikely; Fungal; or possibly we will never know.

Sometimes they can’t determine the kind.

The doctor said he is going to schedule a Bronchoscopy (Transbronchial biopsy) within the next two weeks. He said with this test, if it’s cancer, they should know. He said sometimes this test can be inconclusive but he hopes this will tell us if it’s cancer or not. My Pulmonary tests were scheduled for July 26th and he said he is going to call them and get them sooner. He is very concerned about how fast this is progressing. Six months ago I didn’t cough like I do now and wasn’t having the blackouts.

OK, so he said one way of treating this which works sometimes but not always is Prednisone. He said it’s much higher doses than I have taken in the past and for much longer periods of time like months. The problem he said is the side affects. Your body will collect water and salt so I will swell up like a balloon and that can cause further heart problems. The other problems are Glaucoma and Diabetes. I already have both. I asked him if that means I’ll go blind sooner, he said it’s one of the side affects. Great.

Well, that’s about it. More to come soon…

I'll post again when I know more and when the biopsy comes back.

Hello Clayton,

My name is Jacq and I run an eating disorders charity ( dedicated to T1’s. One of the things that I have come across in my travels is neuropathy of the heart valve, may I ask if your Dr has checked for this?

That sucks, Clayton… I’m thinking best wishes for you. I hope that they find something easy to treat, with little to no complications!

I have had and echo done of my heart. I don’t know what they were looking for in particular. But they didn’t find anything wrong. I have stage 1 hardening of one of my ventricles, enlarged heart and intermittent slightly leaky valve but they said it’s all stage 1 and nothing to worry about. I will write this down though and bring it up. Thanks Jacq.

no problem, xxx

I am sorry Clayton. I will always have “Hope” that you will get better.

love you clayton, one day we will meet soon!.. look up cordyceps …it is excellent for lung issues, chinese meds but can get at any vitamin store or even get it raw in the asian shops to make tea, just make sure its good quality…worth a shot ((hugs))

Clayton - I’m sorry to hear this. My 66 year old mom is suffering from idiopathic pulmonary fibrosis. So I know how it can be. I hope everything works out ok!

Sorry everyone. I lost my Internet connection over a month ago. I’m on a borrowed laptop till my disability comes through with wifi so I can get online now. They just did a high resolution ct chest scan last Thursday and an MRI on my head and neck on Friday. They now think I also have Cataplexy and that is what’s causing the black outs. More tests to come and I’ll try to stay online from now on. :wink: