@gavpowers77
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Gavin John Powers replied to the topic Doctors making little sense despite severe symptoms in the forum Using Our Forums 3 days, 15 hours ago
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. Ev…[Read more]
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Gavin John Powers replied to the topic Doctors making little sense despite severe symptoms in the forum Using Our Forums 3 days, 16 hours ago
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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Gavin John Powers posted an update 2 weeks, 2 days ago
@kimm34gmail-com Hi Kim. Thank you for the advice. I’m already taking Haritaki. 2 x 500mg tablets each day. I read about it and the study in one of your posts. Been taking for two weeks. No effect so far l. Did you actually feel in your body something was improving after you started taking them at some point? I’m really struggling to be hon…[Read more]
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Gavin John Powers replied to the topic How to relax with severe breathlessness? in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 2 days ago
Thank you Silvain and GiGi.
I’ve tried a hand held fan and it doesn’t seem to help me unfortunately.
Yes, I too think I need oxygen. And my sister (a nurse) thinks c-pap or bipap too because my involuntary breathing doesn’t seem to work. As soon as I stop concentrating on taking breaths, my oxygen sats plummet, so falling asleep is really frigh…[Read more] -
Gavin John Powers replied to the topic How to relax with severe breathlessness? in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 2 days ago
Thank you Monica. I hope your journey is comfortable as possible.
I’m getting worse as each day passes. My chest and back is aching and my legs are weak. My sats drop to 89 now unless I’m forcefully breathing. If I stand up or walk my pulse shoots to 140. It’s unbearable. I just wish I could find someone to help. xx -
Gavin John Powers replied to the topic Tests interval in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 4 days ago
I’ve ordered some haritaki online. I’m dearly hoping it makes some kind of difference before it’s too late.
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Gavin John Powers started the topic How to relax with severe breathlessness? in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 4 days ago
Hi,
I’m Gavin, aged 46 and diagnosed with restrictive lung disease. It’s frustrating because between pulmonary appointments that take months, I’m getting worse and worse and never getting a full diagnosis. It’s very much like doctors just don’t seem concerned. And as I’m quite an anxious person they have frequently seen this and put the majorit…[Read more]
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Gavin John Powers started the topic Does anyone get relief from breathlessness in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 4 days ago
Hello all. I had a major exacerbation 9 weeks ago and my breathlessness has become severe and is progressing each day even at rest. It feels I can only breathe in a tiny bit of air. It’s dreadful. I just wondered, of those of you, bless you, who have very severe breathlessness, do you ever get days or periods where you can breathe easier? It’s so…[Read more]
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Gavin John Powers posted a new activity comment 3 weeks, 5 days ago
I went to sleep again but violent shaking woke me up. Think it was breathlessness waking me. My sats were 86 when I woke. I know nobody medical can help me on here but it’s so difficult and frightening waiting weeks for appointments.
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Gavin John Powers posted an update 3 weeks, 6 days ago
Thank you for replies. I’m still really struggling and breathlessness is worsening day by day. It’s really frustrating because all I know is I have a ‘restrictive lung disease’ but nobody has ever elaborated. It’s so frightening. I’m not due to see a pulmonologist at end of June. I’m in bed 24/7 because I’m just so breathless. My oxygen sats are…[Read more]
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Gavin John Powers replied to the topic Doctors making little sense despite severe symptoms in the forum Using Our Forums 1 month, 2 weeks ago
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 aslee…[Read more] -
Gavin John Powers replied to the topic Doctors making little sense despite severe symptoms in the forum Using Our Forums 1 month, 2 weeks ago
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.…[Read more]
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Gavin John Powers started the topic Doctors making little sense despite severe symptoms in the forum Using Our Forums 1 month, 2 weeks ago
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 pulmo…[Read more] -
Gavin John Powers became a registered member 1 month, 3 weeks ago