I have been having problems catching my breath for a while now. I’ve mentioned it to doctors, various doctors. I don’t have a dedicated lung doctor (pulmonologist) so as is often the case when you’re speaking to a specialist about something that is not their actual specialty, they find it easy to brush it off and ignore me.
Over the last few weeks I have found the breathlessness bad enough to make cardiovascular exercise impossible. I get light headed and dizzy and my chest feels tight. I can’t get enough air, I feel like I may faint. Not cool in the gym. Not cool anywhere, really.
Yesterday I told my GP it was getting unmanageable, and he actually saw me when I was having breathing issues. It’s not severe. It’s not that I can’t breathe, it’s just that I feel like I can’t get enough air. I’m always needing to take big, deep catch-up breaths, and it still doesn’t feel enough.
And I feel lousy. I mean really lousy. Ok, so we know that I have liver disease right now, and while my liver is recovering, I’m not in a healthy place. That explains a lot of the ‘lousy’. But the breathing problems are additional, and it is stopping me from exercising, which is making my rheumatoid arthritis pain worse, and my general well-being worse.
So today I had lung function tests. Spirometry measures how effectively you move air in and out of your lungs. Spirometry is used as an aid to diagnose asthma, chronic obstructive pulmonary disease (COPD) and other lung conditions.
The test is done by making you exhale a deep breath, as hard as you can, into a machine which measures the speed and volume of exhalation. You do this three or four times, and it’s extremely difficult! After a ten minute rest, you are given a bronchodilator medication (Ventolin) and then you do it again. If the second set of results is significantly better than the first set of results, the medication has improved your lung function…and there is a problem
And my results suggest obstructive lung disease, possibly caused by methotrexate. She said lung disease caused by methotrexate has an obstructive pattern, and while my pattern wasn’t typical, it was indicative.
Methotrexate. The medication that keeps on giving, long after you’ve stopped taking it.
She also looked back over my history, chest x-rays showing several instances of pneumonia and/or fluid in the lungs. All of which points to methotrexate induced pneumonitis having possibly been kicking around for quite some time.
The upside is my actual lung function is very good. Better than most people of my age. This is because I have spent a life time being fit, cardiovascular fit, doing intense huff-and-puff exercise that has kept my heart and lungs in much better shape than most.
Damn shame Mixed Connective Tissue Disease and Rheumatoid Arthritis had to come along and mess that up. Still, because I started out way better than average, my lung function is still better than average. But for me, it represents a big decrease in function, and it feels like my lungs went from awesome, to a 70 year old smoker’s lungs overnight.
I always had some mild asthma, but that really only ever bothered me when I had a bad chest infection. I have occasionally needed my daughter’s asthma puffer, very occasionally. Now I have my own puffer and my own rather more severe asthma.
Treatment is corticosteroids, which I’m already taking. Again, imagine what shape I’d be in if I weren’t already taking steroids? Yes, they are terrible for you, but I think they are saving my life over and over. Or have been masking the fact that my body is slowly disintegrating for years. Take your pick.
And a bronchodilator (Ventolin) to help me breathe easier and fully inflate my lungs. Hopefully I will feel better very soon, and will be able to get back into the gym and doing positive things for my health again. Breathing is rather essential. Hard to push through not having enough air. But Ventolin works fast, within minutes.
I have a follow up appointment with my GP next Monday. Today’s testing was with the nurse, and while she is the most experienced in all things lung function, I need my GP to confirm all of this, and decide if I need more testing. In the meantime that gives me several days of Ventolin, to see how much improvement that gives me.
I also have an appointment with my rheumatologist. She finally got back to me about my terrible liver function tests, and she wants to see me stat. She’s not going to be excited to hear that not only is my liver rocking the boat, but my lungs now want to join the party.
Lung involvement is not a good thing. Of course Rheumatoid Arthritis itself can predispose you to having lung problems, and lung involvement is a strong predictor of mortality. Doctor speak for patients with lung involvement drop dead a lot sooner than those without.
I’m not dying any time soon. I’m focussing on all those years of hard cardiovascular training I did, making my lungs and heart stronger. I DO expect those years to benefit me now and keep me alive longer. Having heart disease as well is a bit of a cock up though. Hardly seems fair. Not to mention the brain lesions, the kidney disease, the liver disease. Excuse me if I feel a little like I’ve been given a few more extraarticulars than I need. I don’t want to be greedy now…
I’ve been thinking a lot lately about the decisions I’ve made and the sheer bad luck that has resulted in me being here, in this rather lonely, miserable, ‘but you look great’, sick girl, place. How many bad decisions did I make? How much of this was inevitable? Was my body always going to break? How much could I have changed? How much could I have prevented? If I’d had more vigilant doctors sooner, would I be this bad? If I’d refused to touch prednisone, would I be this bad? Methotrexate? Something else? Or did I never really stand a chance. Was this always the way things were going to go. I just didn’t realise this path was inevitable, choosing to stay in my happy little positive thinking, ‘I will kick this thing’s ass’, bubble.
I have spent a lifetime putting someone else’s happiness ahead of mine. The person I loved was always more important than me. I did whatever I thought would make him happy. Why did I do that? ‘The person I loved’ is certainly not here now. Was there any way I could have changed that? Not one of my friends stuck around either. As soon as I was no longer useful, bye byes. As recently as last week, when things go bad, people just leave. Why? What is it about me that makes me so easy to leave?
Don’t tell me not to think this way, that the past is past and it’s no use having regrets. These aren’t regrets. These are thoughts. Reflections. They aren’t positive or negative, they are elements of my nature I need to work through so that I can change. I don’t want make the same mistakes in the future. I need to feel all the feels and deal with the outcomes and then put them away. I can’t change what is done, but I don’t want to keep doing the same things. It’s time I found someone who gives a shit about my happiness, who puts me first once in a while. Who appreciates my smile and wants to be the reason for it.
I was far too independent, and far too confident that I would overcome this disease. I’ve only just recently understood, properly understood, that I am not going to win. I am not beating this. I am never running again. I am never living a remotely normal life again. And without help, I’m not capable of very much at all.
I seriously never thought things would get this bad. And they keep getting worse. Or potentially worse. And my recent liver experience has shown how incredibly quickly the wheels can fall off completely. How precarious life is when you have severe, uncontrolled disease. But, for me, the medications have been as much of a problem as the disease itself. So where does that leave me?
It leaves me wanting a drink. Can’t have one. Chocolate? Can’t have that either. Allergies. Icecream? Nope. No dairy. A donut. Nope. No wheat. I can’t hit the gym. Can’t go for a walk. The dog is sick of being hugged. It leaves me here. With abdominal pain building again. Reaching for oxycodone. And maybe a Valium.