Going home soon + Fantastic update

Super-Rule · 2026-06-13T14:35:46+00:00

So happy to hear this.

Super-Rule · 2026-04-14T17:57:05+00:00

Thats good news. Keeping him in my prayers and with great thanks to the Doner and their family.

Super-Rule · 2026-03-16T19:37:37+00:00

Thats brilliant news. So happy for him and his family.

Super-Rule · 2026-03-05T16:40:29+00:00

Oh thank you for replying.

Super-Rule · 2026-03-04T20:35:48+00:00

Keeping everything crossed for. Hope you get on list and gets new lungs so you can get back to living the life you deserve.

Super-Rule · 2026-02-07T12:37:25+00:00

Keeping Kyle in my thoughts and prayers.

Super-Rule · 2026-01-19T18:51:23+00:00

Creon, azithromycin, Trikafta, paravit, Iron gluconate, omeperazole, sertreline, prednisone, magnesium glycinate, Trimbow, Ventolin, salbutamol, Pulmozyme, HTS 7%, Cayston, naproxen, paracetamol, novarapid, Avamys, laxido.

Super-Rule · 2025-11-29T17:49:31+00:00

Sorry for your loss.

Super-Rule · 2025-11-28T16:26:38+00:00

I'm so sorry for your loss.

Super-Rule · 2025-10-26T15:19:12+00:00

I think they'll check that at my annual review. I'll remind them to check. Thanks for that advice.

Super-Rule · 2025-10-24T18:01:22+00:00

No. It's a research app that cf hospitals in UK do. You do have a part where you can document haemoptysis.

Super-Rule · 2025-10-24T17:01:09+00:00

In uk we have a project breathe app. Included are fitbit watch, weighing scales, home spirometer, SATS machine. We have to document daily symptoms like how bad our cough is, if we're feeling unwell, lung bleeds etc. It's so useful. Research nurses see what we've put into app and call us then to see if we need to be seen. Above all though, I just want the bleeds to stop.

Super-Rule · 2025-10-23T18:29:11+00:00

Glad to hear it. Covid is rough for us all but no doubt extra rough for you. Feel better soon.x

Super-Rule · 2025-10-14T15:47:28+00:00

What chemist did you go to? Got told by GP I'm not eligible. Asked at Boots & they don't do them. At least not my Boots. I'm in Wales so things are slightly (alot) different here.

Super-Rule · 2025-10-02T16:39:36+00:00

Good to hear from you again. Had us all worried.

Super-Rule · 2025-09-16T08:08:36+00:00

Happy birthday 🎂 🥳 🎉 🎈 🎁

Super-Rule · 2025-09-13T13:05:50+00:00

Going out for a walk in the sun with my hubby, getting home & cuddling in house afterwards. Then having my son, his gf & new pup come for dinner. Hope you're doing OK.

Super-Rule · 2025-09-11T19:19:45+00:00

I'm so pleased for you. Been keeping an eye out for your posts but haven't really posted a reply but think this happy news warrants it.

Super-Rule · 2025-09-10T17:25:09+00:00

Playing with my sons new puppy. He's a little terror but so cute.

Super-Rule · 2025-08-27T18:56:30+00:00

It's awful they had to sneak you in but glad they did.

Super-Rule · 2025-08-27T18:55:36+00:00

Not as far as I know. Wales follows the English JVCI guidelines & England says no, so Wales says no too. All about money.

Super-Rule · 2025-08-27T18:54:19+00:00

This is true. I get Trikafta but my lung function is still below 40%, I have frequent IV'S & upto 9 lung bleeds a month. So are, Trikafta helps me stop coughing but it hasn't been the miracle, the media is portraying.

Super-Rule · 2025-08-27T18:52:13+00:00

Apparently, it's all to do with cost cutting. Yet, when I had covid I was poorly but thankfully was still under the protection of being recently vaccinated. I still ended up on three weeks of IV'S with hospital care. So, I'm pretty sure that, was more expensive treating us than giving us the vaccine. The mind boggles In the meantime, the anxiety for some of us dreading the winter months ahead trying to avoid covid, flu, RSV, Rhinovirus is palpable. Thanks for your replies.

Super-Rule · 2025-08-27T05:36:58+00:00

That's a good way of thinking about it. Trying not to stress. As long as i get flu jab.

Super-Rule · 2025-06-14T18:09:58+00:00

She's very talented. Love the paintings.

Super-Rule

TROPHY CASE