Hi all,
Andrew was confirmed as having Covid too. His results came relatively quickly. I'm not feeling too great. Phoned 111 last night. A few hours later a lovely doctor phoned back. I have a test today at 11 and I'm not looking forward to the drive. The doctor tried to speak to someone in haematology but it was too late. She's going to try and get hold of someone this morning for advice. She said that if it was confirmed, at least I could go home.
Is there anything else I should do?
Nic
I’m so sorry to learn of Andrew’s Covid diagnosis, Nic, and of the worry you’re going through, especially as you’re not feeling well yourself now.
I can tell you’re concerned about the drive that you’ll have to make to get tested. Go easy and take your time. If you don’t feel well enough to drive, might there be another way you can be tested? Hopefully, your symptoms aren’t that severe, though.
Trusting that all goes well and you don’t have to wait too long to get your result. Will be thinking of you.
how worrying for you, Nic. Sending love for you both.Cx
Sorry Nic,
This is such a blow especially because you have been so careful. Sending you positive thoughts and I hope you are negative 🤞
Colette x
This must be really difficult as you have tried so hard to keep safe. hopefully you can get to talk to your haematology team today? Maybe ask for an out of hours contact number, I was given a 24hrs chemotherapy number for emergencies.
Is it possible to get a home test instead of driving? When I did a home test in July it was delivered the nxt day, just had to get to a designated post box an hour before last post and results came as a txt (at 6am) in less than 48 hours.
Hope you can keep as comfortable & safe as possible.
Sending best wishes to you Nic. It’s a worrying time for you all but you’re doing all the right things. Please let us know how things go.
Newdawn
So sorry to read this Nic, you have tried so hard to keep yourself safe. xx
Oh dear. Let us know how you get on.Peggy
Wishing you the best!
This virus is awful in so many ways. It removes you from your support system and vice versa. I’m hoping that if positive, you get a mild case.
Do they have the new monoclonals yet by you? Perhaps you can ask about them.
Jeff
There is not much to do with a virus, they are hard to treat. One thing I think is important is to monitor oxygen with an oximeter because covid is known to cause silent hypoxia where people are unaware their oxygen levels are rapidly falling and of not get on oxygen soon enough. I bought an oximeter at the pharmacy for about $40.
I think the most promising treatment for any of us diagnosed with covid is monoclonal antibodies. We have two such treatments given emergency use authorization in the US. It is suggested at risk people get the infusions upon diagnosis and before being hospitalized.
I don’t know the status of monoclonals in the UK other than some big trials going on. They need covid positive people for trials, so if I had Cll and covid in an area where monoclonals were not approved yet, I would look for a trial.
I was sure I had covid a few weeks ago and was surprised to test negative, so you never know until you test. Good luck to you.
I found one in London and just applied. Thank you!
I think that's a good idea. I think some vaccine trials excluded people with cll. I would hope we would be eligible for monoclinal covid trials. Who needs monoclonal antibodies more than people who might have problems making antibodies of their own, like us? I think Trump got them here in the US outside of a trial and before emergency use authorization under some compassionate use request.
I hope your test is negative. If its positive, I hope they let you in the trial. My Cll doctor at MD Anderson told me a couple weeks ago that most of his patients with cll and covid did okay. I still plan on finding the monoclonal treatment if diagnosed with covid. Please keep us posted.
I don't know if the UK has any version of compassionate use/expanded access to unapproved drugs. As an interesting aside, the process Trump used to get compassionate use can be used by others in the US just as well, in theory anyway. Its a process whereby our doctor can make a request to a pharma company to use a promising drug that is not yet approved and is in clinical trials, The FDA then can grant or deny compassionate use approval, but it sup the the pharma company to decide first. We don't need to make a compassionate use request for monoclonals in the US anymore now that there is a emergency use authorization in place.
I have my monoclonal emergency infusion tomorrow at Johns Hopkins. Hope it works as the Covid has kicked my backside so bad I have not been a good caretaker for my wife.
Wow, I did not know you had covid. I think the monoclonal antibody therapy is easily the best covid treatment there is. I hope it helps with you and that will post on your experience and progress. I would think if the antibodies get right to work you will be feeling better before long. Good luck to you and please post on your progress if you are up to it.
I am home. The infusion is a bag not much bigger than a pack of cigarettes. I told them riding in a car for an hour and wearing a mask had cut my oxygen level down. They had me take some deep breaths and after that I was at 94 to 96. No fever and no other glitches. They said some feel good immediately, some a day later, but generally 3 to 5 days later.
Just glad I qualified as today was the last day they would accept me for the "Regeneron". If one wants to partake in the Johns Hopkins program you have to have a positive test and then be accepted and have it administered within 10 days of your first symptoms. I imagine this program is now in every state. It was only approved in November for emergency use by the FDA. Whole ordeal took about 3 hours and is outpatient.
Shepherd777 ,
Would you consider making a post on your experience with the Covid and then the antibody infusion? Your experience is so important for us all.
Jeff
I can add a bit more here. The place looked like the Javitt's Center in New York City. No beds, but lazy boy chairs. Probably 300 cubicles available. Clean as a pin all white and bustling with doctors, techs, and nurses. Three security checks to get through. Masks were strickly worn with shields, booties, gloves, plastic outer garments, because they are dealing with confirmed covid patients. No one patient got with in 60 feet visually of another and if in a cubical you were about 20 foot away from any other patient.
Atmosphere was quiet, serious and no joking around. They were very attentive to bringing you cookies, drinks and blankets, etc. Periodic BP, and temperature were taken and oxygen was monitored constantly. One sat in the lazy boy with feet elevated and shoulders also to each patients desire. I was kept in a t-shirt and trousers so they could look for a rash or hives at all times. They have a list of things to monitor, but have not run into any at this facility yet. Patients appeared to be 55 to 85.
Thanks for the update Shep. My concern is that I had very bad infusion reactions to both rituxin and obinutuzamab needing counter measures for rashes and rigors. I wonder if this mab will do the same?
Jeff
They said any rashs or hives have always appear in the first 15 minutes with the covid stuff. So they sat right there the whole 15 minutes. In addition there were others sitting about 15 feet away monitoring us through wireless machines. The infusion is kept at a very specific temperature and then as it warms up just a bit they start the drip.
I wonder if the protocol is the same: solumedral, benedryl and slowing the drip rate.
Did they give you any premeds?
I do not remember any premeds given.
100% agree with Jeff. Get an oximeter. If your blood oxygen level starts to drop below 92% pay close attention because it means your lungs are being attacked - which leads to much worse outcomes and you may need to get medical help quickly.
So sorry to hear this Nic! It's so frustrating after all this time trying to stay safe in your own bubble. Take care of yourself and your family. If your test is positive, hopefully, your case will be a mild one.
Wishing you both well with every bone I have
Best wishes to you and your family.
So sorry to read this, Nic - please keep us updated. Fingers crossed you test negative. 🤞🙏❤️
So sorry to hear you aren't feeling well. A Pulse Oximeter is a great idea. Rest if you can, push fluids, and bundle up/use a heating pad or hot water bottle/make yourself sweat if you can while indoors. Viruses don't like elevated temperatures, that's why we get fevers to help fight them off. Change your pillowcase daily, have your family do this also so you don't reinfect yourselves if you are exhaling virus while you sleep. If your pillows/blankets seem at all damp, put them in the dryer for 20-30 mins. Wipe often touched handles with soapy water daily if you can & instead of "wipe again with plain water to remove the soap", the second wipe can be clean soapy water & leave it on (soap will inactivate coronaviruses, no need to inhale disinfectant chemicals). I use dish soap.
Please try to stay calm even though you must be extremely worried! So glad you got into the study. We are all sending healing thoughts your way.
Thank you. If it's confirmed I can go home. It's a bit basic on the boat and the toilet has just broken. I'm going back to bed and leaving it for awhile.
Nic,I hope you manage to get some sleep and feel better in the morning 🤞🤞🤞
Colette x
Just thinking of you nic. Suexx
Nic, thinking of you and hoping for better news.
O Nic,
I don't know whether to hope/pray you haven't got the virus so you won't get so sick, or whether it would be better if you have got it, so you can go back to your family and everyone look after each other in more comfortable surroundings.
Hoping and praying for speedy recoveries for all of you anyway...
love and cyber hugs,
Paula xx
I hope you get the results quickly, take care and be gentle with yourself xxx
Sorry to hear this Nic, Keep us posted.jenny uk
Hope you don't have COVID and get the results quickly. I did a home test as part of the Imperial study to see how widespread it was in the community back in September. It was negative. This new strain is v worrying and I no longer feel 'safe' going on a daily walk in the neighbourhood
if you are in bed try to sleep on your stomach. it's important in order to take the pressure down from the lungs and the back. Best wishes.
Thinking of you and hope for a speedy recovery.
Hope you get your result through quickly. Sending you my best wishes.
Hello Nic.Sending you a big hug.... we are just waiting for Paul's consultant to ring with his latest blood results... I hate this time...
Hope you get a good result and you feel well very soon,
Fran 😉
So sorry to hear this. It is times like these that I wish we had an unlike button. I think it was smart to get your hematologist involved, he can advise the attending best way to proceed. Definitely keep an eye on your oxygen. You may also ask about taking vitamin C and D, these have proven to be helpful. Please check with your hematologist prior to taking. All the best,
Sandy
Thinking of you. Best wishes Y
So sorry you are unwell to Nicola, in my thoughts and prayers. Marc x
Oh Nic I am crossing everything that you have escaped this virus. You have given up so much to try and stay safe.
Sending positivity, and cyber hugs and hoping so much that you are ok.
Bubnojay
Sending prayers for you both...🙏
Nic, how are you today? Any test results yet?
Thinking of you,
Paula xx
Not yet xx
Thank you ❤️
Sorry result hasn't come yet. Are you feeling any better in yourself, Nic?
I do feel a bit better thanks Paula. Felt awful last night and today but feel brighter. X
So glad to hear that, Nic. Every little bit of "better" helps... 
x
Good to hear 😀
Is it NickyNoodle? 😎 Everyone is sending you strength. I only wish you had some support system to help you.
Thank you all for your kindness. Means a lot. Still waiting for the result. I still feel fluish but better than I did. I think Andrew is having a rougher time of it at home. His kidneys are hurting this morning. We tried to chase my result and they won't until day 6 after the test.
Thanks for the update Nic, I was looking to see how you are. Fingers crossed for you hun x
Just got my positive test result. I'm going to have a Lemsip and head home. X
Nic, Positive for covid?!! Get a pulse oximeter if you don't already have one and please monitor your oxygen levels. You can have something dangerous called happy hypoxia with covid and not realise how poorly you are.Presumably, if you all have covid you might as well go home and look after each other as best as you can.
My thoughts are with all of you Nic, please keep us updated.
Jackie
We've ordered one, thanks Jackie. I wasted £70 on useless online tests that gave false negatives. X
It's so hard to know what is right and wrong Nic, you did your best x
Prayers for you and your family are headed your way.
I was just following up on your post, I'm sorry to hear about what is happening to you and your family. Thoughts and prayers are with you all for a speedy recovery.
Take care of yourself Nic. I’m relieved in a way you can now go home, can’t be much fun alone on a boat in this weather.
Best wishes for a trouble free time.
Newdawn
Nic, you must have mixed feelings about the positive Covid result.. No one wants it of course, but at least you can be with loved ones in some warm and comfort - and with a toilet that works!
Keep us in touch,
Thinking of you all,
Paula xx
💐
Sorry to hear you caught it. Hope it turns out to be no big deal for you and your family. Keep us posted.
I’ve just arrived back on this site after losing my darling husband to effing cancer 5 months ago. We have been very lucky so far in NZ. Nic, I’ve just read your post. Please know my love and thoughts are with you, for what little it’s worth. XXX
I’m so sorry to hear this Sucee. Take care, you must have had a really tough time x
Newdawn
I'm so sorry to hear this Sucee. Your message is worth more than gold. Never underestimate that. X
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