APPOINTMENT AT UHSM

[freefaller]

Hi All,

My appointment was brilliant. definitely made the right choice to go there. Spent about 3 hours talking to Docs, nurses and physio's. 6 blood tests taken and spit pots given to send sputum samples in. Got another appointment for October 2nd. They think this is not an actual aspergilloma but an aspergillus nodule - which is practically what my first consultant said but never actually put in writing and it may go away, may stay as it is but may get bigger in which case the situation will be reappraised. Will be scanned regularly to keep an eye on it.

At present I am wondering if this course of antib's has killed off the HI colonisation. Finished this morning. Am pleased to say I am sleeping well again and now I don't have to set an alarm to take my first antib at 6 am am hoping my sleep pattern will get back to normal. Not coughing so much and sputum clearer with these antib's. Need to make an appointment with the Doc later so that we can go through the letter he will get from UHSM. I know that probably hasn't been sent yet but by the time I can get an appointment it will probably be time for my next appointment at UHSM

Hope you are all feeling as well as possible. The deluge continues here and for all of you who live further East - it is coming your way!

Keep healthy,

Sian

xoxoxoxoxoox

[Deehbee]

That's great news Sian I'm so glad you got some answers. Take care xxx

[Suzy6]

So happy for you Sian. Hope the journey didn't tire you too much.

Have a long rest.

Good to see you back.

Love Suzyxxx

[freefaller in reply to Suzy6]

Actually not too bad driving. I find motorway driving tires you out the most as it is generally boring. Coming home across country was much better and all in all quicker as saw the traffic jams on the motorways as we passed over or by them.

How are you getting on Suzy? Looks like our deluge will be coming to you by Wednesday or Thursday. Has the hotter weather affected you and sill the change to damp and rainy weather have an effect too?

Keep well,

Sian

xoxoxoxoxox

[Suzy6 in reply to freefaller]

Saturday was unbearable with the heat. Today I'm sitting with a hot water bottle. It is cold wet and windy.

Yes I'm doing OK thanks. Had last Chemo Friday. Petscan 2nd Sept Consultant 8th Sept. depending on results next treatment will be discussed.

I am so lucky with my lovely Consultant she talks everything over with me and we come to a joint decision.

Love Suzyxxx

[freefaller in reply to Suzy6]

That's good. Didn't the weather forecast get it wrong about today? Siad we would be clear all day. Fortunately, our washing machine has broken so couldn't do any washing to put out. If I had I would just be pegging it out now. The deluge continued until about 2 here! We took a hot water bottle to bed last night - didn't need it for long but needed it to warm the bed up a bit! Lovely sunshine now and warm as anything.

Hope your chemo went well and the PET scan shows an improvement for you. So glad you have a lovely consultant who talks things over with you. Wouldn't it be awful if she was a dogmatic domineering person?

Keep warm

Love and hugs

Sian

xoxoxoxoxoxo

[knitter in reply to freefaller]

Hi freefaller I am glad that you were so well cared for. I have been down to West Wales twice in the last few weeks from the North Midlands, but we got caught out on the Heads of the Valley road.....it was closed just minutes before we got there...a long detour.

Best wishes.

[freefaller in reply to knitter]

Thank goodness it wasn't closed for us on Friday night as we were on there for a while and of course on Thursday morning until we got on the Mway. That road used to be so bad - it was all humps and bumps and as wavy as the sea! I imagine there was some subsidence from the mining?

Sian

xoxoxoxo

[Billiejean_2]

That's very encouraging Sian. Just goes to show that it's always worthwhile going to the specialist units.

[Hidden]

Great to hear you're actually getting some answers to your problems Sian. Lovely day here on west coast of Scotland ☀️😎 take care! 💖

[Hidden]

Great to read your uplifting post! So glad you have answers,& feeling more positive about things!

Love Wen xxx

[freefaller in reply to Hidden]

Thanks Wen. How are things going for you?

[cofdrop-UK]

Brilliant news Sian. So pleased your team is so proactive and I hope the HI has been evicted.

Love cx

[freefaller in reply to cofdrop-UK]

I don't really think the HI has been evicted actually but those antib's worked better than any others as with the others my sputum started colouring up while still on them but only just started doing that today when I have finished them. If it doesn't go I am still thinking of consulting with a immunologist to see if that will help. It may be that if it hasn't gone then they will do something at UHSM about it next time as I have lots of spit pots to send back.

xoxoxox

[cofdrop-UK in reply to freefaller]

Maybe not sweetheart. HI is a little b****** and mine just won't take the hint and hides away squatting and then starts to party all too often. Neb Tobramycin but temp is still fluctuating from normal to low grade and the gunk is not a clean green.

Lovely subjects we chat about on here - but then we live it.

I'm hoping it behaves for you hun.

love cx

ps - good idea to see immunologist. I expect they will do that anyway at new hosp. x

[freefaller in reply to cofdrop-UK]

It is definitely better but till get thicker stringier ligthtish green sputum at times - though not when I am doing a sample! Isn't that just typical? Anyway just done my first sample and have to go into town now to pop it into the post office to try and make sure it gets there before the weekend. Must remember in future to do my samples on a Monday or a Tuesday to send in as will probably be a close run thing for them to get this one before the weekend and don't want it hanging around.

Yes we do talk about wonderful things on here don't we? pleased to say that my peakflow is sometimes back up towards my 340 reading but it seems to like 325 a lot more now but not feeling so SOB with it at the moment.

Hope you are feeling OK. There has been a slight break in the deluge here and sun is shining. The other half is moving the old washing machine out and cleaning out the space as expecting new one to be delivered tomorrow. The day before I went to Manchester the door wouldn't open and washing inside! Luckily engineer came on Saturday and released the washing and it was still good and smelled clean and fresh. New door and labour would cost near enough £150 maybe more and new machine £210. Nice engineer didn't even charge us for coming out on Saturday either. Resurrected my faith in human nature. Amazing how much washing you collect even when you are trying to be careful. Towels and beds still need to be changed. Hope everything goes smoothly tomorrow.

Sian

xoxoxoxo

[Northern-soul]

Hi Sian,

I am glad your appointment went well. I have found all the staff at Wythenshawe to be very good so I am not surprised you were pleased with them.

It sounds like the team there will keep an eye on you and hopefully sort you out.

I do hope that the nasty HI has gone for good,

Carolyn

[freefaller]

Yes, I wish I had known about them earlier and gone there for my asthma and bronchiectasis if i could have. Absolutely brilliant. Cannot praise them enough.

[Northern-soul in reply to freefaller]

I attend there for both. They run a joint clinic on a Wednesday afternoon so that you can see both teams in one go.

It makes life easier for them and me to have consistency, although it is a very long day! Your GP could refer you or you could ask at your next appointment with the aspergillosis team if they can refer you if you wish.

[freefaller]

Thanks I think I may just do that. I am so impressed with the set up there. The people are just so great. Love each and every one of them.

We collect all our change and split it between Royal British Legion, Royal National Institute for the Blind and Cancer Care. Have just released £20 from the box and will be sending to National Aspergillosis Centre this time - maybe next time to BLF. Though will have to make a donation to Legion in November.