lungs of steel

3.3.14

But not really....

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.

Details:

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.

My symptoms:
  • Shortness of breath
  • Feeling of tightness across my chest (mainly on my right side)
  • General chest pain (again usually on my right side)
For me, this has been a debilitating disease which has substantially altered my quality of life. I am hoping that my lung specialist can help me out a little.

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.



9 comments:

  1. Hi my love,

    I'm so sorry you now have to decide on this scary surgery. I think I'd like to hear from both the lung specialist and the heart specialist that regardless of the success of this surgery - that you will be able to handle what it involves. If they can safely do the surgery maybe it's best to do it? This feels so unfair that you have to do this on top of everything else. I just can't imagine. I'm sending you all the love in my heart today as you grieve the loss of your dad and also draw inspiration from him. I hope you know how loved you are. - Rochelle

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  2. Well surgery of any kind is serious but this is real major surgery. What concerns me is the doctors don't know which condition is causing more of it and they can't give you any sort of guarantee that it would help, so the thought of you being exposed like that scares me. Can't they do some sort of exploratory surgery first to find out if it is your heart or lung condition that's doing it more before they really dive in there?? Either way its just not fair that you have to go through this.

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  3. Although surgery of any kind is scary, what really are your options? The fact remains that your lungs will not get better and perhaps this surgery can buy a little extra time so the doctors can figure things out! That is just my thought, but good luck with any decision you make! All the best :)

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  4. Have you tried an anti-inflammatory diet? I'm grasping at straws here...I have thickening in the palms of my hands which restricts tendon movement; it's a vicious circle. The thickening is caused by inflammation and the tendons get inflamed from friction through a tightened tunnel. There are a number of dietary ways to reduce inflammation in the body. If you are interested in finding out more about anti-inflammatory foods, you can check online - or we can chat for fun. It is really hard to decide about surgery, especially if one is hoping that a diet or tincture or tea can help. I honestly don't know what i would choose. I admire you for the way you manage your life around such uncertain circumstances.

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  5. Is there any way to find out your bodys natural reaction to an irritant before you have surgery? My SIL has had her bowel removed and a bag made but although the surgery is thru laparoscopy but every time they go in her body reacts by creating adhesions. The surgeons may have corrected her bowel problem but she now has acute pain and is on heavy pain medication because of all the adhesions. I would hate for you to have surgery only to come out with a bigger problem than you started with. Have you had surgery before? Gosh I hope I haven't scared you silly, that was not my intention. I hope you get the time to explore all the pros and cons before you have to make a decision. hugs Jenni xx

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  6. I have no medical insight, other than what you have provided... I have no true way to say what I think I would do in this situation. But I have been thinking more often than not lately... when in doubt, poutine. Oh no, wait... When in doubt- trust yourself. For me, balls to the walls baby. Obviously you are aiming for the greatest possible outcome, but alternatively- would you rather die from the disease, or die in combat against it? Cid

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  7. Either way, I agree with Margaret Jo- I admire you.

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  8. I am consistently inspired by your positive attitude. I'm sure your writing and silver-lining attitude is exactly what folks going through similar things need to read sometimes. Often thinking about what you m'dear, and rooting for ya!

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  9. I am consistently inspired by your positive attitude. I'm sure your writing and silver-lining attitude is exactly what folks going through similar things need to read sometimes. Often thinking about what you m'dear, and rooting for ya!

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