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Testing tomorrow
Hi, everyone.
A little backstory, I have Mixed Connective Tissue Disease (MCTD), which means I have symptoms that overlap with several connective tissue diseases. For me it’s mainly Lupus, Scleroderma and Rheumatoid Arthritis. On top of that I have Sjögren’s Syndrome (main issues for me, dry eyes, dry mouth) and Raynaud’s Syndrome (blue/purple toes and fingers when I’m under stress or it’s below a certain temperature (just holding a can out of the fridge for example)).
I had Pericarditis when I was 17, about 9 years ago. Monthly echo’s to follow it up until they decided I didn’t need check ups anymore. I used to bike a lot, but after that heart issue I never managed to sit on a bike for longer than 2 minutes without my heart pounding and my lungs burning.So here I am today, ever since having my baby (16 months) my energy is slipping more than usual (but, hey, I’m a new mom, isn’t it normal to look like a zombie?), I have a lot of dizzy spells, pounding head, etc…
The thing that bothers me the most is my ribs hurting to the point that I can’t breathe, and it feels like the bottom ones slip over each other, my general practioner thought my entire rib cage was either bruised or broken, so she sent me for X-Rays….everything looks fine and perfect.
We moved recently, so I had to find a new rheumatologist for check ups, figured I should make a list of “complaints” since I’d forget most of it, and added my painful ribs as well (doesn’t hurt to get a second opinion, right?). She went down the list, and started asking questions that I later found out are common symptoms in PAH (swollen ankles? check, but that’s been since the pregnancy, really. Difficulty sleeping? Can’t answer that, baby’s teething and I have PTSD, I wake the second she does, which at the moment is a lot). She made me 3 appointments, one for a cardiologist, one for a pneumologist and one for a gastroenterologist (I have a lot of reflux, my oesophagus is burnt, which leads to bleeding when I’m having a bad day and the only thing that helps is coughing up the blood, not too worried about this appointment).
She also gave me referral letters to give to them. I can’t read everything since it’s handwritten and doctors aren’t known for being the neatest writers, but the one for the cardiologist says she wants an echo done to “rule out PAH”. The one for the pneumologist says she wants them to check for “interstitial lung disease”, so after a week of googling (I know dr Google is a quack) I’ve come to the conclusion my rheumatologist is pretty sure I have PAH, seeing as I do see a lot of symptoms I’ve listed. And also, my previous rheumatologist should have checked up on my heart and lungs more seeing as I’ve had heart issues in the past.Part of me is relieved I might finally have an answer about the pain (and the cough I’ve recently developed) another part of me would rather have them not find anything and decide it’s just stress or something? I don’t know if I’ll be sleeping tonight…
So yeah, thanks for reading, I’m sorry for any mistakes, English is my second language.
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3 Replies
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Hi Lily,
I’m sorry your post got flagged for moderation (not sure why) and I didn’t see it until now. Thank you for sharing your journey with PAH symptoms. I hope the echo was painless and you will start getting answers soon. I know a number of PH patients who were diagnosed after a pregnancy, and this may have been the event that exacerbated your symptoms. Thank you for reaching out in our forums. We are here to provide support and answer any questions you have. Hopefully they will rule out PAH with the echo! If not, the gold standard for diagnosing PH is the cardiac catheterization. Has this been brought up yet?
Your English reads perfectly to me. Glad to have you here!
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Hi Kathleen
I just figured it was the normal new member type of moderation (to check if I’m spamming), so I don’t mind.
The echo showed nothing, so they had me hooked up to a heart monitor for 24 hours, I won’t know the results until the 21st, but my heart races every time I wake up, so they’ll be able to see it’s not acting right. They haven’t brought up the cardiac catherization yet, since the echo shows a perfectly healthy heart, I’m hoping the results from the monitor change their mind, but it feels like I’ll have to get a lot worse before it’ll show up enough for them to do something.
The lung function test also didn’t reveal anything, it’s a little worse than 5 years ago, but not in a way that worries them. I have a CT coming up to see if that shows anything. My fingers were too cold to do an accurate reading (they had one for a few seconds but since it was low and my fingers were blue, they assumed it wasn’t accurate), so they drew blood from my wrist to check. My daughter’s physical therapist is going to lend me her pulse oximeter, so I can do a more accurate reading at home while my fingers are warm. We have to be there 3 days a week, the walk should be getting easier, not harder.
Thank you for having me, even though we don’t know what’s wrong yet. -
So an update, I went to the doctor last week, since the pain I had felt like I was having a heart attack. Everything looked fine, so they decided that since my muscles are all tensed up it was probably a long lasting muscle spasm. She decided that I should start taking Tramadol again (I quit when we tried to get pregnant and I don’t want my reflexes to be compromised when I’m alone with my daughter, which is why I haven’t taken it in nearly 3 years).
No results yet for my 24 hour heart monitor. Pneumologist seemed confused when I told him that the nurses said he should have them.
CT-scan showed white spots in my lungs, which he wasn’t that worried about, but it also revealed enlarged lymph nodes, so we booked a surgery for next Monday to take one out and figure out why it’s enlarged.
The provocation test finally proved something is wrong with my lungs, we discussed how shallow my normal breathing is and I’m supposed to start an inhaler (Symbicort TH?) and come back in 3 weeks (perhaps he’ll have the results from the heart monitor by then). He thinks it’s asthma, but he also doesn’t seem too sure. Getting the inhaler today, hopefully it helps.
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