I am new here and am not sure I’m in the right forum but I can imagine there’s a lot of experience here. I need some help understanding as someone fresh to chronic chest pain.
Some background. I have just been diagnosed with a second autoimmune condition (Hugh’s sticky blood) and may have 2 others.
I started having chest pain last April not long after my palms went blue black and blood pressure dropped to 136/65. The pain has migrated to the top of my chest front and back. I was referred to a chest specialist at a London Hospital but my 2 week urgent referral was downgraded last September and then subsequently ‘lost’ my referral.
I continue to have pain which is increasing in area and slowly but surely a cough that doesn’t go away. I have periods of sudden breathless and at other times periods of high blood pressure. My pulse soars (174 or 185) when walking but drops to below 50 whilst sleeping. I have discussions with my GP who tells me to chase the hospital, but the hospital passes me from pillar to post.
I had a VQ mri lung last year to check for clots and none were found and because my joints aren’t permanently swollen and stiff so the Rheumatologist discharged me. I am trying to gather statistics for when I do eventually see a chest specialist and also separately a cardiologist.
I purchased a SPO2 monitor this week to differentiate between a heart problem and a chest one. When I wake up in the mornings I check my levels which range from 88 to 93. On sitting up it’s 94 and later in the day 96 or 97.
My question is are these SPO2 numbers worth mentioning to a consultant? Should I be concerned? Is it normal for hospitals to lose referrals?
Grateful for any suggestions or thoughts.
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LeanneN
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Your co2 sounds a bit low in the morning but recovers well. I would go back to the dr and tell him to re referr you. The length of time you have been waiting to see a specialist is unacceptable your gp should be chasing up the referral not you he put in the initial requests. Good luck i hope you are seen soon
I agree with corriena and would insist my GP re-refer me immediately. You have a right to know what’s going on and shouldn’t just be forgotten about. Xxxx
corriena and sassy59 are right. It is appalling to be treated as you have been. And it is the GP’s job to do the chasing not you. Have you tried the GP’s secretary? They are often excellent. You mention a VQ MRI. You had two separate tests? Certainly if a V/Q scan was normal then acute or chronic thromboembolic disease can be ruled out. That’s the one done in two sections with radio active stuff in the blood to look at the blood vessels then radio active stuff in the lungs to look at the airways. There are lots of rectangular slides/cameras that move around the couch. The end results look like tree roots. MRI is the claustrophobic tunnel one.But you certainly need more investigations. If you continue to feel that the hospital is letting you down you could try contacting PALS, (patient advice and laiason service). They deal with complaints. And yes, hospitals do lose stuff but they shouldn’t. And must be challenged when they do.
Thank you corriena, sassy59 and katinka46. I finally received a phone call this afternoon from someone who I not quite sure is. However she has managed to track down in the ERS system and via calls what is happening. Apparently the hospital has made a mistake and haven’t arranged an appointment for me in December when they should have. Fingers crossed that they will contact me next week.
Yes the 2 phase VQ had radioactive tracers in blood and air and after that a quick mri. No clots found in lungs but they didn’t look to see what is causing the pain. Rheumatologist has confirmed that the pain is neither muscular or bone but yet doctors without any examination or questions tell me its bone inflammation and then order tests which aren’t getting any results that warrant attention (I could be wrong though).
So I am wondering about how to really get this pain, and other symptoms addressed because (like everyone) I would like to get on with my life and not be a patient. It seems like you have to prove that you’re not a attention seeker or worried well. I worried now that I am going to be seen I’ll be dismissed still in pain and with problems.
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