Who,what, where?

[astragal]

Good afternoon everyone

I would appreciate any advice or experiences.

I was referred to a ‘hot’ clinic by A and E after going there with hemoptysis on Christmas Day. The respiratory doc there has requested I have a HRCT, a lung function test and a bronchoscopy.

However a referral my GP made to the Brompton came through and I saw a consultant there on Monday. I wasn’t feeling great that day and everything just seemed to go out my head. He was keen to know what was growing in my sputum before deciding if long term antibiotics were needed as I had 7 courses of antibiotics over 6 months. Ironically I could not produce any sputum, I tend to mostly have it first thing. Bloods were taken, saw a physio. as he felt that might be beneficial. The bleeding he felt was possibly going to be part of the condition for me, but an untreated colonisation may be making it worse. To be reviewed in 3 months.

Afterwards there were plenty questions came to mind, such as is it useful to have the HRCT or is it unnecessary radiation? Would the bronchoscopy help or make it worse?

Of course trying to speak to consultants on the phone hasn’t been successful in the past, so I am not sure what is best.

I know it probably seems silly with my health conditions to be concerned about radiation, but I have had many x rays and so far 3 CT , one which was a whole body one and 2 chest, not sure if they were both high resolution, the last was in December 2018.

The GP called yesterday to say a sputum sample I submitted a couple of weeks ago showed up a colonising bacteria resistant to most antibiotics apart from Ciprofloxacin. But it’s not Pseudo. I started Cipro for first time yesterday.

Since my husband passed I have lost my advisor, the voice of reason.

Anyway, advice gratefully received.

Best wishes

Liz

[Damon1864 Volunteer]

Hi Liz I think you should listen to your consultant they know best , but you can always get advice from your GP. Have a lovely weekend and take care of yourself 😊 Bernadette xx

[2greys]

I have had 15 HRCT scans, with contrast. 3 Whole body PET Scans. 11 chest X-Rays. SABR treatment (radiotherapy) with 60Gy in 5 fractions, all in the last 3 1/2 years. Still alive and kicking, I don't glow in the dark either

Fear not, they would not be giving them to you if they were not deemed necessary, they are quite expensive to perform as well.

[astragal in reply to 2greys]

Thank you for helping to put it in perspective. About 30 years ago I had surgery on my left lung to remove bullae and to stick it back up, I had over 30 x rays then. My husband used to joke we could save on the electricity I could light up the room instead.

[Oshgosh]

Would be good to have the recommended tests to find out what’s happening currently.

Ask for some sputum pots from docs,then you can spit in the morning. Try to have a rel weekend.

[astragal in reply to Oshgosh]

Thank you, yes I think you are right, it’s better to keep an eye on what’s going on in there. I will get some more pots too, they are always useful.

[HungryHufflepuff]

I have nothing helpful to say but just wanted to send you lots of good wishes 💐

[astragal in reply to HungryHufflepuff]

Thank you, good wishes are very much appreciated.

[Corin1950]

Sounds like the consultants been very thorough. Sending you my best wishes

Corin

[astragal in reply to Corin1950]

Hi corin

The hot clinic consultant felt that as I had been lost in the system and left to my own devices, she wanted to be more thorough now. The thing is that resulted in multiple referrals, I then was seen by 2 consultants, both have different views regarding treatment. So that’s where the confusion occurred.

Thank you for your kind wishes.

[Susan1200]

Sending big hugs 😀

[astragal in reply to Susan1200]

Thank you Susan, much appreciated.

Hugs back.