18 years of .....

[BennyC]

Greetings one and all. I've had a breathing issue for many many years. During the first 6 months, I couldn't make a set of stairs, or put weight on for love or money. Well, anyway, for some crazy reason, it took many many months to see the experts, by which time the problem slowed, and I was able to walk again. The acceleration of worsening has virtually stood still, although over many months and years. These days I feel like I'm only using the top part of my chest, and my head feels like it's in a clamp.

I recently managed to secure another referral to the specialists. My lung function results don't seem to quantify just how bad this feels, but there are a few low scores.

FRC - 59 % of what to expect.

RV - 78 %.

VA - 81 %

TLCOSB / c - both 75 % ish.

It's been a hell of a journey. I know there are lots worse out there, but at the end of the initial 6 months, I thought I was completely out of lung space, then remarkably, I seemed to open up a different part of my chest, and since then, it's all slowed down. I'm getting my heart measured soon, and in my mind it ought to be enormous by now. Sorry to ramble on, and best wishes to everyone who has struggled with any breathing issue, as I know how much it completely dominates a life.

Peace!

BC.

[Katinka46]

Truly one hell of a journey. I sense there are hard things along the way when your concerns were not being taken seriously.

Glad you are here.

Brilliant site.

Others will help you.

best wishes

K x

[BennyC in reply to Katinka46]

Many thanks K. Still hopeful of a diagnosis somewhen. It's literally the most important thing now.

Best wishes.

BC.

[Katinka46 in reply to BennyC]

I soooooo identify with that. I've only been waiting five and a half years. But you know how one measures these things accurately when desperately waiting for a diagnosis. I feel I don't care what it is, just something to understand and get on with. The absence of a diagnosis is frustrating beyond any frustration I'd felt before.

K x

[BennyC in reply to Katinka46]

I hear that! Good luck amigo

[BennyC]

Just to add my sGaw is like 200 % more than expected... Not sure what it all means, but there we go.

[rubyred777 in reply to BennyC]

Hi Benny

What is sGaw

Never heard of it. Your fev1 is

59%? Good to meet you.

Rubyxx 😊.

[BennyC in reply to rubyred777]

Hi Ruby, nice to meet you too. Well, some of my scores are low, but nobody seems to know what is going on. I'm pushing for one of those new CT scans, but my doctor is being a bit difficult. Sgaw - I'm not too sure, but mine was v low, and is now off the chart. It's all so frustrating, but I know I am not alone. Hope all is well with you too Ruby. x

[freefaller]

Sorry to hear of how bad you have been. Hope you get your referral quickly and that you get some results.

Love and hugs

Sian

xoxoxo

[Dedalus]

Very interesting Benny - please let us have an update on the heart measurement too. Glad you're feeling a lot better and hope it carries on - all best wishes.