I wish all the "stuff" showing up in my chest x-rays was steel. Or actually, I probably don't. But I certainly wish it was NOT a bunch of scar tissue called pulmonary fibrosis and pleural thickening.
Pleural thickening is a lung disease that describes a calcification, scarring, and thickening of the lining surrounding the lungs (pleura). My lung specialist and I have no idea why I have this. Like many medical issues, symptoms vary with every individual.
- Shortness of breath
- Feeling of tightness across my chest (mainly on my right side)
- General chest pain (again usually on my right side)
Pulmonary fibrosis is a chronic disease that causes swelling and scarring of the air sacs and tissue between cells of the lungs. The scar tissue replaces healthy tissue and causes inflammation. Ouch! This damage causes your lungs to stiffen and makes breathing more and more difficult. It's interesting to me because this also describes the issues I have with my heart: thickening, scarring, stiffness... So there must be some relation. C'mon doctors!
Anyway, some common and some rare diseases can cause pulmonary fibrosis, but in the majority of cases the cause is not known (idiopathic pulmonary fibrosis). Pulmonary fibrosis can be a mild disease causing few symptoms or it can be a severe and possibly fatal. (I took this definition directly from the Canadian Lung Association's website)
Mine has been diagnosed as idiopathic pulmonary fibrosis. FINALLY I am part of a majority. Too bad this is what the Lung Association has to say about this type: Idiopathic pulmonary fibrosis (IPF) is a disease of scarring in the lungs. The scars in the lungs cause the lungs to become stiff, making it hard to breathe. Over time, the scarring becomes so thick that the lungs cannot take in oxygen.
Here's a picture of a "normal" chest x-ray (courtesy of google images) TOP and a picture of my chest x-ray BOTTOM. The black areas are where air fills in. When you have a chest x-ray you take a deep breath and hold it, so these are images of lungs full of air. Even an untrained eye can see that I don't have much black space. Therefore not much capacity for air. All those little white thin spiderweb type burst things on mine are lung fibrosis. The pleural thickening is along the edges. And as you can see at the bottom left side - it's all white? (the white on the right side on both images is the heart)
So what to do.... (y-know aside from the whole double heart/lung transplant business)
Well, as it turns out, I may be a candidate for a certain type of surgery. I wasn't going to "google" it because that usually gets me all worked up, but for the sake of my post I figured I would. But as I am typing this and already feeling panicked, I have decided not to. So I will simply explain this to you as I understand it. Which is probably just as reliable, if not more, as what I may find on google anyway.
It is classified as major surgery. They "cut me open" (yes that's in quotes because I am actually quoting what my doctor said) and then go inside my lungs and scrape the scar tissue off. Then I wake up, have some Hospital Jello and maybe, say.... go for a jog?
I need to have a few more tests done to see if I am indeed a candidate and to have a risk assessment done. I take blood thinners so any surgeries are a little riskier for me. Not to mention the fact that I am always that 1% of rare people who get that bizarre side effect....
So readers - I'm reaching out to you. I want to know what you think? If I am a candidate should I consider it? Please comment. Don't worry, I know this is my decision. I would just like to hear what others think. Comment as anonymous if you are shy.
A few end notes:
- My lung specialist is AWESOME so don't judge him from the above quote, taken in context, it was quite funny.
- I have since found out via my nurse friend that they typically do this type of surgery laparoscopic-ly, so although it's considered major surgery, they may be able to perform it in a minimally invasive way.
- Even if I am a candidate - there is no guarantee it would even help because a lot of these symptoms are also the result of my heart condition; the doctors just don't know which is causing more of them - my heart or lungs.
- The thought of this surgery scares me to death.
I wasn't going to "go there" but here I go: Today is the anniversary of my dad's death. He died when he was 57. He was originally hospitalized for pneumonia and was never released home. I wasn't going to blog and I haven't in a while because - well I took all these really great pictures, but somehow lost them when linking up my phone to my computer. And I'm so disappointed. But instead, I'll post what I have and if I ever find those lost photos I will add them. So dad this lung post is for you. Thanks for still being such an inspiration to me.