Bread and Butter

As promised I’m sitting in the car typing away as we are returning home from UCLA. At the moment we are on top of a very large overpass connecting us to the 105 FRWY which will get us to the 605 FRWY and then to the 91 FRWY (just confirmed this with Jim and his mom). I don’t pay too much attention as we travel, but at the moment I’m praying we get off this overpass before an earthquake hits. I don't think I've ever been on a longer overpass.

How do I explain in the simplest terms what the doctor explained about my diagnosis? I really don’t feel like I understand it all. He did say that my disease is a bread and butter case. I asked what that meant and he explained they see this every day and know how to treat it. That was great news to me.

My first pathology result from the Bronchoscopy was a general result, which they were able to confirm I do not have to the degree they thought. This is very good news because once you are diagnosed with this you have 3 to 5 years to live. I had known this, but didn't feel I should share until it was confirmed. I honestly continued to believe it couldn’t be possible.

There are three degrees of Interstitial Lung Disease. So they were looking for another pattern that would be much worse and more difficult to treat. My disease is in the middle - not the worst, but not the easiest. My exact diagnosis is: Fibrotic nonspecific interstitial pneumonia (NSIP) pattern trichrome-EVG stain confirmatory - pulmonary fibrosis, which is a pattern that is treatable. It will be treated with six months of steroids and antibiotics. The antibiotics will be given to prevent me from getting sick as the steroids will jeopardize my immune system. After six months I will have another Pulmonary breathing test to determine if there has been any progression in my breathing capability. He can’t guarantee what the results will be because each patient is different, but it is possible that I CAN regain full capacity of my lungs (or at least close to what they were). The hope is that the steroid medication will melt away the fibrosis.

I cannot start treatment until I have completed by reconstruction surgery and have completely healed. There are many side effects from the steroids (I will be taking Pretizone - 40 mg). The main concern is that my body will not heal if I’m taking the steroids before the surgery. Also, the steroids lower your immune system. The one thing he said is that I can’t get sick. I’m just not sure how one fulfills that request? The other common side effect for women in general is weight gain – especially because I will be on the treatment for six months. Of course that is something I’m not looking forward to. I won't go into my personal feelings about this during this blog.

My doctor at UCLA believes I can handle my own Pulmonary Rehab because it is basically doing daily exercises. I’m considering going for a couple of weeks to the facility and learning the proper exercises and then continue on my own.

Most importantly I have my signed release to return to work part-time. I cannot return fulltime until my surgery is complete and my breathing level has increased. If all goes well I get to go back on Monday. I'll get to work 12 days before I'm off again for my next surgery.

I think that's it. I hope it makes sense. I think it's great news compared to what it could have been. We still don't know how I came down with it and how easy it's going to be to get rid of it (if ever), but we have a start.

Finally, some news that is encouraging. Yeah!!


We are home and our drive was great! I'm grateful that Jim's boss allowed Jim to come with me at the last minute (thank you, Joe!). I needed Jim to be there with me. Jim's mom was great too. I made sure she had her notepad and was writing everything down. I told them both to ask as many questions as they could come up with (on top of the list I had). We don't have to go back until after I've been on the steroids for 6 weeks, which I probably won't start until the end of May.

It's clear I still have another busy year.

Once again we thank everyone for all their support.