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Thanks all.
Yes spinnaker exactly that, the longer it’s left the worse it gets.
He is awake and speaking but it needs 2 days for the drugs to kick in at $10000 a pop + how many days in ICU, if it was acted upon with my request of SNG001 how it could have been different, we’ll never know.
He was offered the evgen drug yes, as part of that drug he had to return to hospital 3 times in 2 weeks which is a 45 mile round trip at 83 years old. I did push him to have it and he was all for it I believe but they didn’t come back to him because his lungs at the time were ok.
Kenneth
Thanks for the update on your dad and I hope things go better from now on.
I wondered whether he was ever enrolled in the Evgen trial? Are you in Dundee by any chance since that is the base for the Evgen trial I believe?
On the Guillane-Barre syndrome, I believe this is usually post viral and usually temporary. A friend of mine came down with it over a year ago and it affected him very seriously for a few weeks. He couldn't walk or use his arms properly and lost loads of weight. I don't think it was related to Covid. He was about 63 and otherwise fairly fit but improved after 3 months with full nerve action now after going through a scary phase.
Very best wishes to you, your father and family.
Spinnaker
LordGibil and Kenneth, so sorry to read your news, makes it even harder knowing what we do, please all take care and keep us in the loop,
Kenneth, I remember it well when you told us about your Dad a few weeks back. And I think someone here helped you get it touch with Prof Wilkinson but unfortunately SNG wasn’t on trial near you.
What a worrying time for you, and really hoping your Dad recovers with all the careful, loving attention he will be getting from the medics and nurses in ICU.
He’s lucky to have you continuously researching and pushing on his behalf.
Thinking of you Kenneth, wish the very best for your Dad.
Hope your dad is OK Kenneth. Well done for persisting and fighting for him.
Ah Kenneth. Worrying times for you buddy. Thank you for sharing; thoughts and prayers for your dad's recovery.
An update from my Dad, he tested positive 3 weeks ago I got him an oxymiter, it dropped to 86 I called an ambulance for him, they took him to Ninewells and I pleaded for them to call cliningen to access SNG001, they said they wouldn’t and pretty much left me hanging on the phone.
They let him out 2 days later as his lungs seemed to be ok (let him out too early I thought at the time) 2 days later he started being unsteady on his feet and couldn’t stand until he eventually collapsed on the stairs again we got him back to Ninewells and then sent him to Arbroath infirmary to get cambulescence.
Again I thought this was premature and a day later he started struggling with his arms and not being able to sit up, I researched it and on the Sunday night I asked them to test him fir gullyian Barr syndrome (wasn’t taken serious enough even though I stressed I wanted him tested and it put on his records, next day they put him back to Ninewells and he started struggling with breathing and swallowing pretty much nailed on symptoms of above. 3 DAYS LATER he is getting treatment for what I pointed out to them, he is now touch and go and in ICU.
Moral of this story is go with your gut feeling don’t let any one fob you off research the symptoms and push for treatments, I only wish they acted a bit quicker on what I suggested but I understand the pressures of the NHS.
Do go to the hospital. Your partner needs
monitoring. All the best
Please ensure you have a Pulse Oximeter at home, you can get one from the usual online retailers and check her )2 levels 4 times per day, if it is below 92 % go to hospital.
AGree to call an ambulance (and exaggerate severity if symptoms). Don’t feel guilty about it - Not when there’s a baby involved.
Minimum a paramedic check over will give you both peace of mind. But I’d be surprised if they don’t take her in for monitoring. In hospital they will have her on a constant fingertip oximiter and can spot anything deteriorating the minute it happens.
Good luck and hoping all the best for her.
Sorry to hear that 99Treble.
Lord.
If you haven't already done it, you should call your wife's Antenatal department urgently.
They will advise.
Invest in a pulse oxymitor.
Look up on google COVID at home and it will give you the oxygen safe blood levels which is a strong indicator when it drops to call 999.
Sorry to hear that 99t.
LordG - I echo everyone else’s thoughts - better to be safe than sorry. Any doubt get straight on the phone to 111.
I hope and pray this turns out well, my friend has been on ventilation for 5 weeks, NHS staff said he's a DNR (do not resuscitate) a week ago. Sadly last night he went away. Very sad indeed. We need SNG001, now, more than ever so God speed. This is not going away.
LordGibil, all the people I know who have had it are around a similar age, fit and healthy and they described pretty much the same thing, i.e. tight chest and breathlessness when moving. It was after a few days of symptoms starting that they gradually began to ease and they were back to normal within two weeks of the symptoms starting. So for what it's worth, it sounds like a typical case and she'll hopefully begin to see an improvement soon. Obviously she should speak to a doctor immediately if she hasn't already done so, or if her condition worsens.
But agree with the others overall I should’ve added.... I’d ring 111 for sure
Lordgibil, I don’t want to alarm you but I would advise you to call for an ambulance and get her admitted without delay, today. I am not a doctor but if she is pregnant, experiencing breathlessness, and has GD that puts her in high enough risk to be in hospital where they can monitor her closely and check her oxygen levels etc. They can make a call on what she gets but most importantly act now rather than wait til she gets worse. Again, don’t wish to sound alarmist but I’ve had friends admitted after rapid change at home (all recovered and well now) but at least they can check all is well. GL.
LordGibil. You should.111. Immediately.
Really sorry to hear this. I can’t help with the trials answer, but as a lifetime asthmatic I’ve always used menthol crystals in a steam inhaler (£7 from boots) when my chest gets tight. Just eases it for me (a little). May help whilst you’re trying to access a trial. Hope you don’t mind me suggesting :)
withoutt. only when she moves, she has had medical advice and they have told her to stay at home and rest
LordGibil, what an awful position to be in, I really feel for you. Is it worth investigating the Emcap treatment (is that the right name?) they are offering in Cambridge, I'm sure it was suitable for pregnancy. Check it out.
Sorry spell checker
LordGibil
Lord fibula
If your wife is struggling to breathe, she should be in Hospital