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Doctors making little sense despite severe symptoms
Hello, I’m Gavin. 46 and in UK.
For about four years now I experienced episodes of chest discomfort and an awareness I couldn’t quite breath in and out. Sometimes with gaps inbetween of 4 weeks where I’d feel Ok-ish. In 2021 these started to become more regular and I never returned to how I was before each flare up. I got referred to a pulmonary consultant who ordered spirometry and HRCT of chest. CT was done September 2022 and spirometry in August 2022.
Spirometry showed a concerning restrictive pattern – I had about 20% lung capacity, but doctors kicked this into the long grass because CT showed only a tiny Bronchiectasis at bottom of lung. From there on, I’ve been fobbed off because I’m visibly anxious all the time and they put it down to that. However, from December 2022 it has been getting worse and about 6 weeks ago the mother of all exacerbations began. Constantly breathless and getting worse. Over past fortnight it’s become intolerable and now feels like I’m trying to breathe into lungs made of tyre rubber. I’ve also got a horrible dry cough that nothing eases. They give me salbutamol and budesonide, occasionally prednisolone, but none do anything. Also I can’t yawn and can’t sleep (been awake about four full days now) because I literally stop breathing at the point I nod off and SPO2 drops to mid 80s. When I have somehow managed sleep I wake up feeling like my lungs are tiny and and it’s very laboured sleep. I literally like if it’s not me forcing a breath, I don’t breathe. It doesn’t ease even at rest and if I just get up to sit, stand or even move slightly, my pulse goes up to 145+. This does lower to a permanent figure of 115 once I sit back down but my sats then plummet. Showering and toilet use are so difficult. I just feel like I’m going to collapse. I’ve seen GPS, been multiple times to A&E (ER) and they continue to put it down to anxiety. This is because somehow whenever a medic sees me my oxygen sats are 94-96 but it constantly dips lower and the breathlessness continues to get worse.
what I’m seeking is advice. As well as CT I’ve had multiple chest X-rays and nobody ever spots signs of fibrosis. So they continue saying anxiety. I’m so frightened and every day is a complete struggle. I’ve lost 20kg since November 2022. The fear, breathlessness and frustration is endless and it all falls on deaf ears. Even my family now believe the anxiety line. But I’m 100% it’s not anxiety. How could my lung function be so poor yet they ignore it? Im getting nowhere, just more unable to breathe – with only tiny breaths in and out and a creeping, weighted feeling on my back and over my breast areas. This sometimes hurts too. There’s also pain in my legs and arms intermittently and I really struggle to walk. I just don’t go anywhere now.
I paid to see a private doctor after Christmas and he ended up being one of the NHS docs who’d seen me so fed me the line about anxiety again. Nothing will convince anyone how ill I am. I find everything, including eating very hard. Any advice is appreciated.
Would IPF have shown on X-ray by now? Why are they ignoring a, by their own admission, very low lung function, which if PFT repeated I know will be worse than last time? It’s like I’m shouting into a lead wall and all they say is anxiety. I wish everybody on here well and await any advice you can give.
Gavin. -
11 Replies
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Hi @gavpowers77
I am so sorry you’re having this experience! I always say unless someone has experienced true breathlessness, they have no idea how terrifying it is and I’m very sorry the doctors won’t listen to you by the sounds of it. Chalking it up to anxiety must be so infuriating! It sounds like you might need to “prove” your hemodynamics (ie. oxygen rates, blood pressure, heart rate, etc) when they are abnormal. Take a video of yourself and then down to your wrist or finger – however you measure your 02 rates – and ensure its time-stamped. Oxygen in the low 80s is really dangerous and with proof of that happening to you, no doctor should question what is going on. I’m not sure if this is helpful? Also write down trends, note when you BP/HR are high and what you’re doing and time it, so that theres a pattern, this might interest the doctors as well.
Its not uncommon to “not see” fibrosis on an HRCT or X-ray unfortunately. I know tons of patients where their scans haven’t shown this, and interstitial lung diseases (ILDs) are really complicated to diagnose. From my understanding, there are over 200 different types of ILDs and not all are fibrosis-based so other things could be going on. Have you had your c-reactive protein checked in bloodwork? That is in indicator of inflammation and might be insightful for your doctors. Hang in there and keep pushing – a lot of doctors unfortunately chalk these things upto anxiety due to our age. It wasn’t until a nurse discovered my low 02 levels herself (didn’t listen to me telling her they were low) that things were kicked into action for me, because “I was too young” to have a lung disease. Keep in touch and I hope some of this information is helpful.
Charlene.
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Thank you Charlene,
The symptoms are there permanently and worsening. It actually feels like this last three weeks the structure of my lungs feel different like they’re being pulled apart. I’ve even heard a crunching type noise on some breaths in. And this thing with the moment I nod off I stop breathing – I’m going on 7 days with NO sleep. I’m like a zombie with heart pounding at 130 and above and sats anywhere between 84 to 92. I’m somehow existing but not living. I’m hoping to be referred to a new respiratory team this week but fear this is too little too late. I’m convinced if they did a new CT scan now there would be evidence plain to see of fibrosis. Just there’s no point asking or ringing ambulances as they’re so fixed on it being anxiety.
It’s all so frustrating, as I’m sure you know. I definitely feel I’ve constantly been misdiagnosed so long that the disease has just been left unchecked to run riot.
Thank you for your reply. It would be a dream if none of us were on this cruel journey and I wish and hope for all of us that there is some comfort somewhere down the line somewhere.-
Hi Gavin
whatever it is that you are going through, it sounds grim.
don’t know if you have a fitness type watch that measures oxygen levels or a pulse oximeter but I agree that if you can evidence that your oxygen levels are dropping to mid 80,s then no healthcare professional should be doing anything other than getting you into hospital. My o2 on even gentle walking goes to 87 88 but I recover from that very quickly back to around 95 once I stop exertion. I was told by my GP that if it ever went too 85 regardless of recovery rate I was too let the gp practice know or get to a and e
Anxiety in itself shouldn’t be dismissed though, going through what we do it is normal to be anxious or even have panic attacks. They can be disabling to some people.
I hope you get the treatment you need. I am in the UK also and know how slow things can be with the NHS.
again, look at a way to monitor and evidence you’re stats.
I wear a Samsung Galaxy 5 pro and use a finger pulse oximeter and between them can manage all my stats and send to the medical team I am under.
kindest
Scott
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Thanks Scott,
I have a finger pulse oxometer and an Apple Watch. The pulse ox was calibrated by a paramedic on a 999 call a few months ago so I know it’s accurate. The main problem is that I am getting no sleep at all – every single time I start to nod off I stop breathing and wake up. I’m getting blocks of about an hour where I’m awake asleep awake asleep for minute periods and that’s the nearest to actual sleep I’m getting. My sister who is a nurse, in a management position has sat with me as I lay in bed and confirms the stopping breathing and saw sats drop to 84. She, through her NHS contacts, is how I’m hoping to be referred to new respiratory dept but it all takes time with NHS as you said.
A consultant ordered a sleep apnoea study last year and I barely slept all night with the device on so results ended up coming back with no problem as they assumed it was just a steady nights sleep. Also, I wasn’t as ill then as I am now. It’s all so frustrating and difficult to prove. I just don’t understand why it’s so tricky to get the right test at the right time for medics to say “ahh yes” and spot a symptom.
But for time being it just remains subjective, frightening and lonely, as I’m sure everyone here can testify.
kind regards,gavin
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Hi again Gavin,
glad you have the tech to be able to monitor you’re Stats, being able to evidence what you are saying can only be a good thing.
Your sleeping , or lack of does really sound grim. I was in the military and know what sleep deprivation does to the body and more importantly the brain, after 4 days of hardly any sleep I was reaching the stage of sleep deprivation psychosis and losing the ability to interpret reality.
Not a medical professional so can’t offer a medical opinion. I hope the NHS is in touch soon and you are able to begin the journey to feeling better. The only thing I would say is that if you can afford too, then ask your GP to refer you to a private practice and see what they say. Going private and paying for my own CT scan was the only way I knew I had PF in lungs, the NHS had said I would have to wait 20+ weeks otherwise for a scan.
Thoughts are with you and hope you get some resolution
Scott
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I have had pulmonary fibrosis and IPF for over 10 years now and am using Esbriet and Tyvaso with good results. However, about 6 months ago I found I absolutely could not sleep. I’d just lay wide awake, looking at the ceiling all night despite trying everything (sitting up, sleeping pills, etc.). Finally, I was sent to the hospital and diagnosed with atrial fibrillation of my heart. After getting my fluid levels/weight down, I went into surgery and my heart was shocked to get it back to normal. This was successful, and I’ve had absolutely no problems since. You might pursue potential heart issues with you dr.
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Hi Gavin.I understand completely.I was diagnosed almost 3 years ago.I’m not on oxygen yet.I too panicked at night,I found using a small fan blowing on low towards my face helps me breathe.Check your oxygen meter right before you doze off,then turn the fan and breathe the fresh air.Helps me,and I’m 63.Wishing you the well.
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Gavin, your story is heart wrenching. I have traveled down some of the roads you are on. Thorough pulmonary rehab and exercise and collaboration with my physician I have gotten significantly better over the last 18 months. So much so that, at the urging of my physician, I wrote a book about how I’ve recovered. The book A Matter of Life and Breath will be released May 1. I will happily send you a copy of it. My physician wrote the foreword to the book describing how bad my condition was when we started therapy. I cannot begin to address all of your issues and questions on this thread but I will be happy to have a conversation with you to describe my condition before and the principles my physician and pulmonary rehab followed to restore my lung function which was 28% at the lowest point.
You may message me to set up a time to talk as one patient to another. All the best to you!
Lee Fogle -
Hi Gavin,
I am also in UK, my husband has IPF.
I’m so sorry your not being looked after in your area, I know the feeling of shouting and no-one listening.
Can I clarify, your lumg function FVC was 20% or you have lost 20% ?? My husbands FVC is 66% and was sent for a full oxygen assessment- was determined he didn’t need it but ask for and oxygen assessment see if you get anywhere…
Take care
Pam
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Hi Scott. That would be very useful. My number is 07772044038. I’m in the UK. So if abroad you could WhatsApp me?
I’m supposed to be having a 24 hour sats monitor device but that is taking forever and I’m fearful I’m not going to be able to wait much longer.
My breathing is so bad.
kind regards,Gavin
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I don’t understand the spirometry results but the consultant told me the results (in September 22) were I had 20% lung capacity. He kind of ignored it. Said “it’s very low, but going on how you’re presenting I’m not concerned and I can’t see fibrosis on your CT scan”. Although they saw two Bronchiectasis close together, they said were tiny. Even then I felt indescribably ill. Progressively got worse since but get nowhere with medics. It’s like they don’t want to know or that they’re fearful of getting involved. My sats are always 80s/early 90s unless I cough or huff out air and they momentarily rise to 94-96. It’s bonkers how the NHS (here in Doncaster) just refuse to believe it’s something sinister, due to my age I guess (46). Meanwhile I’m suffering a constant fight to get air in and out. I can’t walk anywhere, especially with how just getting out of bed pushes my pulse to 140-160.
It’s very frightening as I’m sure you and everyone on here knows. All I know is I’ve been told I have restrictive lung disease. Nothing more or any attempt to make me comfortable. A restrictive pattern like the one I have should really be taken more seriously. But as soon as I say I’ve read something they say “don’t trust dr Google” and dismiss it as anxiety, even when low sats are in front of them. I’ve even had one doctor say “you don’t look ill”. It’s incredible.
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Are you seeing a Pulmonologist or just an MD? Sounds to me you need to be on Oxygen.
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Hi Gavin,
I am sorry to hear the anxiety in your post. I feel for you and understand. I am 79 and was diagnosed with NSIP back in 2017. I was frightened and anxious as well. I got no satisfaction from doctors or nurses and searched and read all I could find on the internet and in books. Nothing that fully explained me and my condition.
What I did find was everyone’s story was similar but different. there are over 200 different lung diseases/conditions with most being rare. Despite lots of research, lots is not known about how to treat these diseases much less cure them. There are not many answers to our questions.
This is where I have learned to accept what I cannot change. I no longer worry and fret. I count my blessings and not my losses. I have used my time in geneology searches to allow my children and family some knowledge of their ancestry. I’m interested and my mind is occupied. Time passes very slowly now and I am very aware of life and the beauty that surrounds us all. This is not a practice run – this is it. Don’t miss it. Appreciate it -carefully.
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