[Gavin John Powers]

So, I had a low dose CT privately.

It showed a 6mm nodule in my right lung middle lobe. That’s the area where I could originally feel pain and discomfort (which I now have all over chest, along with breathlessness and low sats, dizziness and high pulse etc). The nodule wasn’t present on High Res CT in September. I need to somehow get the NHS to compare my new CT against the private one. Getting nowhere. It’s quite frankly frightening how the NHS is so difficult to contact or to take me seriously when I’m so ill!

[Gavin John Powers]

Yeah I keep reading things about zinc. So I’ve been taking it. Guess it can’t help. Although I’ve been taking haritaki and serrapeptase for ages too and neither help. Worth a shot.

[Gavin John Powers]

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 frightening. When I do get sleep I wake like I’m trying to swim to the top of a swimming pool. On checking sats on waking they’re frequently only low 80s and I’ve always got a headache. I’m always waiting for doctor appointments that take months so I’m left in the dark suffering. Ringing an ambulance doesn’t help because by that point I’m panicky and sats go up to mid 90s so emergency doctors just send me home. It’s like I need to be blue and collapsing before they’ll do anything. All they say is A&E (ER) is not the place for me. It’s a hideous journey we’re all on and it’s good to hear others’ advice and kind words. I am having a visit from a respiratory nurse tomorrow so I just hope something comes of it. I wish everyone well and pray I and everyone else can get by without suffering. I’ve never been particularly religious but have always believed in God. Lately I find myself praying a lot. Love, Gavin x

[Gavin John Powers]

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]

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

[Gavin John Powers]

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.

[Gavin John Powers]

Thank you for your comments Charlene and hope you’re as well as you can be. Sadly, every time I call an ambulance or visit a doctor my sats remain above 94. They occasionally dip for a few minutes but I’ve had a doctor say even at 90 it’s not a concern if they go up. I think I somehow compensate and over breathe in those situations. Maybe cos I get a little anxious. But when I’m back at home they drop a lot. I just went for a sluggish walk to the local grocery store and noted they were at 88 when I got back. I was very out of breath and pulse was at 158. These things just aren’t normal for me. I slept pretty much all of Friday, Saturday and Today. Which again isn’t normal for me. I’ve made a GP appointment to try and get my private CT onto NHS systems for comparison, but the pulmonary consultants get very angry if I keep saying they’re missing something. It’s like their word is final. All I know is that the nodule spotted this week in the private scan wasn’t on the NHS one in September. The private place I went said not to worry about the nodule and to get another scan in 6 months. But when I mentioned it wasn’t there in September they seemed concerned and said I need to get the original radiologist dept to compare them. And no, the private scan didn’t have an NHS referral – I used a service online where you pay a private doctor £350 and they write a referral. As daft as it sounds, the private scan was at an NHS hospital, but as a private patient they don’t have access to your NHS records and vice versa. The only referral my GP could do last time I saw them was to refer me to another NHS trust, likely miles from where I live and there’ll be a long wait. Other than that, all I can do is wait (knowing for certain something isn’t right) until my SP02 drops to 88 or below and ring an ambulance. It drops low every day and if I cough a lot and walk about it goes above 94. But when I relax again it drops after a few minutes. Sadly you can’t do all this in a 10 min doctor’s appointment. They did a sleep study with a home sats monitor and all was fine but this was months ago before it got as bad as it is now. I still can’t believe they were never concerned about the severe restrictive pattern on spirometry tests last August. I think a lot of the dismissive ness is because I’m under 50. Anyway, thanks for your kind words and I hope things are as ok as they can be for you.
take care,

gavin.

[Gavin John Powers]

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.

[Gavin John Powers]

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

[Gavin John Powers]

I’ve ordered some haritaki online. I’m dearly hoping it makes some kind of difference before it’s too late.