My dear friend asked me if it’s right for doctors to not be forthright with patients. To not tell it exactly like it is. I said no, it’s definitely not right, she is correct there. (I’d told her about an AS patient who suffered terribly after they had to basically undo her bent over spine and insert rods and pins to make it straight so no longer wanted to fix her permanently bent neck. The doctor even phoned to ask when she would have the surgery. She said no.
I don’t think the patient knows what I know. The cases of people who died because their bent necks crushed their tracheas and they were not able to breathe. I saw it in a dedication post by a daughter whose dad died like that. I suspect her doctor wants to save her from that possibility. But hasn’t told her so. Hasn’t told her what can happen as the AS progresses.)
After my lung functions tests, which hurt and led to much more discomfort than I’d ever felt after some of them, the doctor wasn’t happy with the fact that the lung diffusion test also had a bad result. (We have long known my lung capacity is low.) He asked about my iron, suggested that I have a full blood count done so he could check my iron and I told him I’d had a blood test two weeks before, requested by my rheumatologist.
He then phoned his receptionist and asked her to phone the pathologists and get my results as he needed to know my iron levels.
HE DIDN’T TELL ME WHY HE WANTED MY IRON LEVELS EXCEPT TO SAY THAT IF MY IRON IS LOW, IT WILL EXPLAIN MY POOR RESULT.
We waited. And waited. I didn’t even realise how significant it was that we didn’t just continue with the rest of the appointment, end it so I could leave and he just look at my results whenever they came through. I also didn’t get the significance when he said (after the results came in and he saw the official copy) a baseline CT scan would be good, just so later when damage is visible, we can track it…After a good 10 minutes of us just sitting there, waiting for LathCare to respond to the request, I got tired of awkwardly reading a book in front of him, and decided to go onto my PathCare app and show him from there. He saw that my iron was definitely not a reason. But didn’t say what exactly it was not a reason of. Didn’t say what lung diffusion is about.
So I assumed it meant that air was not going everywhere it should be going when I’m breathing in.
But that’s only a very high level understanding.
It means that oxygen is not passing properly from my lungs into my BLOOD. This is now not only about my lungs themselves, but about my whole body. Blood is life. If my blood doesn’t have oxygen properly, we have fatigue, weariness etc. And of course, it’s not good. Our bodies need oxygen.
Before the scan results came through, I’d been hoping that perhaps I had just been having a bad day that particular day when I went to do my lung function tests. After all, I’d done them twice before and I’d never had the pain and discomfort AFTER them that I had this time. Maybe something had been off that day.
But the scarring and bands (I read my CT scan report after the pulmonologist update me and told me to go in if I feel my lungs are deteriorating, instead of waiting for our next formal review and scan.) in my lungs put paid to that. There’s a physical reason why this test was so horrible this time. Why my lungs felt like they were struggling.
They are.
And so, it’s sad that I had to find out what the lung diffusion test is about via online websites on pulmonary fibrosis. I wish he had just been open. Yes, he did say we will intervene when you can’t sing and can’t walk and talk, but he didn’t tell me that intervention eventually stops working and you die. He didn’t tell me that yes, some do live long, but the average life expectancy after diagnosis is 3-5 years.
Knowing my days are shorter than hoped would help me take each one that passes without a crisis and make it even more special to me. I’ve been very grateful that despite having AS, I can still move my neck and twist my back. Things I’d have never been thankful for. If he’d made the reality more clear, I’d have been grateful even more that “today, my lung function hasn’t become so bad that I have had to ask to see the doctor.”
And besides the Enbrel suppressing my immunity, I’d make sure even more that I don’t get sick. Last year when I had a chest infection, my husband spent a night awake, very sure I was dying because I kept breathing like I was taking my last inhale. It was ‘rattly’ and the breaths were very far apart. Now we know it’s a possibility. An infection killed quite a few of the members of the fibrosis group I was in who weren’t yet inactive and on their death beds. They thought they still had time. Each time I’ve told my friends I felt like I was dying, it was more real than I thought. So grateful for LIFE.
But
Life is full of surprises. Lots of hardship. The first rheumatologist I saw thought the never ending AS pain and constant fatigue plus the children’s extreme needs were “too much, it’s not fair.” He asked, “Why is God allowing this?”
I don’t know why. But I do know that friends who care about every aspect, offering moral support, not unsolicited advice😉, make it easier to bear.
Bearing each others’ burdens. A theme of mine lately.
And I hope I never become so self focused that I stop caring about my friends’ hardships because I seemingly think mine are more important. I hope my people never stop telling me that I’m caring and kind for remembering them. There’s room in my brain for the problems of everyone who has made room in their minds for mine!❤️
I don’t want to become the person who out of the blue writes, “Hey A, how are you? I just wanted to check on you and hear how you are these days. My lungs are terrible, I can’t sleep at all and would you believe, my loc broke and it’s the third one this year to break off at the bottom and I’m in so much pain! The Enbrel is giving me horrible side effects and life really sucks. I have nobody to listen to my complaints so under the pretense of wanting to know how you are, I’ll really update you about how important I think my problems are so that you think this message was about checking on you when really, I won’t recall how you respond, i won’t internalize your response at all because I just wanted to get off my chest how miserable I think my life is so you pity me.”
Shoot me if I become that person.
When I want to check on someone, may I mean it. May I just write and ask. And wait for a response. Even when I’m using oxygen – in 100 years’ time!
Common Signs of Interstitial Lung Disease, Fibrosis That I Had
– chest infections that become very bad. One doctor even said I’d been so worried about the children’s sickness that I put myself last, endangering my life. She reminded me that a dead mom can’t nurse the children
– crackling when your doctor listens to your lungs via stethoscope
– doctor not hearing sounds of air in parts of your lungs
– being given asthma pumps but them not helping
– dry cough
– discomfort in lungs when lying flat. Less ability to breathe
– breathlessness
– wheezing
– tiredness. This one I have only thought was caused by AS fatigue / exhaustion
– chest x rays that are clear yet doctors think you have a problem with your lungs
If you have these and others that you can freely google, please rather see a pulmonologist instead of your beloved GP. My GP kept prescribing antibiotics even though chest X rays showed no sign of infection. She never suggested a specialist. I just figured that if antibiotics hadn’t ’put any air’ in the bottom of my lungs where she couldn’t hear any, a second round wouldn’t either. I needed someone with more expertise.
They said I should write a book 