This is all anecdotal (i.e. my experience), but it may be of interest. I have primary APS (stroke, DVT, kidney clots, cerebral infarcts). INR = 3-4 + hydroxychloroquine.
I got coronavirus (confirmed test result). Admitted into hospital following seizures, high temp >100, breathing difficulties, low blood oxygen.
And there I spent 12 days on oxygen, with a few days touch and go when it got quite serious. I'm not going to sugarcoat it. I've had extended stays in hospital before, but this was the worst experience of my life. I saw people traumatised. I saw grown men asking to die (by stopping the oxygen supply). I saw people physically fighting their hallucinations. Nurses were superb with a high ratio of nurses to patients. The ward, hospital, and doctors did not seem to be under added pressure, and there was a friendly, relaxed, atmosphere on the ward from the staff.
When the disease gets going, it's very, very tough. It's like drowning. And your muscles go. You can't even stand. I went 8 days without eating, due to loss of appetite. And would have a fit every time my temperature climbed too high. Everyone seemed to be clotting, as everyone was being injected with heparin.
More relevant to APS patients is perhaps the craziness of my INR. Usually, I'm on 11 mg of Warfarin. They took me down to 3 mg and INR continued to climb to 6. The anticoagulant team at the hospital really struggled to get it under control. I had a venous test daily.
Even when my INR was fairly high at 6, I was still injected with clexane/heparin. I do think being well anti coagulated before admittance, my INR going higher than it should, and the clexane helped a great deal, even though my risk of a bleed must have been high. Even now my INR is fluctuating wildly from 1.2 to 6 in the space of a few days, despite monitoring from the anticoagulation nurses in Haematology 2-3 times a week. This is highly unusual for me.
I got discharged after 12 days. Before the illness I could run 5 km. I lifted heavy weights at the gym three times a week. Yet I left in a wheelchair. Couldn't even walk from the ward to the elevator. Once at home, I needed bed rest for 23 hours a day. It just wipes you. Was unable to talk due to weak lungs.
Note: If you have APS and are on blood thinners, then they do not test for pulmonary embolism within the NHS when admitted with coronavirus. I asked why. The response was that the treatment would not change whether you have a PE or not. So the docs *think* I had clots in my lungs, but there is no confirmation. Non- APS docs were not interested in APS in the slightest.
I'm now in week 9, since onset of symptoms. Recovery is quite slow. Apart from the back garden, I haven't been outside or walked for 8 weeks. Muscle strength starts to return after about 6 weeks.
I got told that antibodies to the disease take 2-8 weeks to form after symptoms have stopped, and therefore to be extra cautious during this time.
At week 6, my exercise bike arrived, and I started building up my leg muscles and lung capacity. It really has helped a lot. Can highly recommend.
I am convinced, this is just my opinion, take it or leave it, that hydroxychloroquine has helped speed my recovery. Perhaps via reducing inflammation, but who knows.
The upshot is, as far as I'm concerned, if you have APS, whether we are classed as a vulnerable group or not, take coronavirus seriously. We may not be at higher risk of catching it like our cousins with Lupus, but given we clot and get inflamed under normal circumstances, when I did get it, then it struck real hard -- and my APS was really well controlled at the time.
Thank you for posting what is a traumatic experience. I have SLE & mild APS & in lockdown for many weeks.
It’s interesting re: hydroxychloroquine because the experts are not convinced of its efficacy but your experience is your experience.
Experts are similarly perplexed why some patients fare very badly. We know that the majority who died have underlying diseases. Yet some over 100 years have beaten covid19 including a lady who had the Spanish Flu a 100 years ago.
Thanks for posting your awful experience with the virus, it is a question all of us ask, 'how would we cope?'
Your fitness prior is probably what kept your body as strong as it could be.
I attended a webinar hosted by Prof Hunt this week, all about coagulation with Covid, interestingly, covid patients are not showing up in normal pre covid days tests for PEs and they are looking for other ways to test for blood clots, but trials etc are going on all around the world.
Also it was mentioned that national guidelines now for any covid patients on admission to hospital, is to put on heparin (Even if previously on warfarin), as easier and safer to control. Also to switch in the communities where possible to protect patients and staff in clinics.
No mention was made to APS patients and Covid.
Again thank you- I'm so glad you got through it and wishing you a speedy return to your 'normal' x
Wow, incredible story! Thanks so much for sharing your whole story! Important to share, to spread the word to take this virus seriously. Amazing to me that some people just will not take this seriously.
I have a close friend that I avoid because he does not feel as though he should wear a mask because he is a "free" human and can make choices......My sister in law is a nurse and she feels like there is nothing at all wrong with being overly cautious.
Take care and prayers for a continued, steady recovery back to your normal self!
Thank you so much for sharing this. I have Lupus, RA and APS and have been curious about any insight on the APS side. I am also on hydroxychloroquine for Lupus and mycophenolate. Starting Rituxin in two weeks. I'm not fearful but I do feel apprehensive about catching it due to immunosuppressants and then my response due to APS. I think it will take a while before there is a real understanding of this virus.
This was very helpful and I appreciate your information. I'm glad you are on the road to recovery!
Thank you for sharing, very interesting. I hope your recovery continues, but take it easy, the more we find out about this the more it is clear that if you get it bad, recovery can be a roller coaster, and the dips can put you right back in hospital. I've heard this from multiple personal contacts (including my wife!), none of whom have been hospitalised thankfully, but I have read elsewhere multiple stories of re-admission weeks later.
Hydroxychloroquine isn't showing much benefit in treatment trials BUT the UK has just announced a large scale trial for prophylactic use and there must have been some smoke to start investigating that (won't comment on the wisdom of certain world leaders...), so it may well have helped if you were on it before (guessing that might be the case).
The INR management issues are about as I expected they would be, slightly surprised they didn't bridge you straight off on heparin, either way it makes us a pain for them to manage and is a major risk to us.
The comment on testing for PE is spot on (good clinician, some of them forget this one) - testing (for anything) is pointless unless you are going to do something different depending on the result. In fact, it may be worse than useless as some test procedures have risks in themselves, and no benefit if you aren't going to do anything different.
Thanks for sharing this horrendous experience. The only question is do they know transmission route? eg travel overseas (esp cruise ships) or close contact. Have they tracked down the source?
The Government here have released a Covid 19 app which is supposed to activate if you're in close contact with some one who has the virus. Like a lot of hastily put together info - the app doesn't really work properly and has already been updated a few days in.
There's no contact tracing here in the UK. In terms of transmission, no one in my circle of friends, family, colleagues, neighbours have had it. No known contact with anyone who had travelled. I work from home and don't travel on public transport.
My children are all adults. My wife and two adult children got mild coronavirus 10 days after me, so I was the transmitter. We followed all social distancing advice, although in the UK, we closed down arguably 2 weeks later than we should, and I suspect in that 2 weeks, even though I had limited contact, I may have caught it at the supermarket.
For those interested. Treatment in hospital comprised:
1. Intravenous amoxycillin (ten days ) and oral azithromycin (5 days) (both antibiotics).
2. Intravenous and oral paracetamol and head ice packs (for temp).
3. Warfarin
4. Clexane
5. Hydroxychloroquine.
6. Intravenous anti-sickness drugs. The nausea and sickness, while the least medically threatening symptom, was the most difficult to deal with.
And of course lots and lots of oxygen via face mask and nasal route (11 days worth).
One bright doctor had me sleep on my front, face down. Made a huge difference to my breathing and blood oxygen readings, allowing oxygen to reach the back of the lungs. Right lung had collapsed.
The other interesting reading was resting heart rate was at 100 -110 bpm all the time for 11 days. Cognition and memory also declined. I'm 44 years old, so hopefully not too old.
Hopefully you are now immune (though again, no one is terribly sure if this happens or not). Have to continue social distancing and I wear a mask at the supermarket -no proof it works but then no proof it doesn't help! Here in our state just recently, there was a gathering or party of some sort, (about 30 people)where one person had a "cold" with runny nose etc. since then 21 guests have tested +ve. I guess the biggest problem is symptomless people who could pass it on unknowingly while they remain untouched.
That is amazing reading your story.You really are so lucky to have survived.What wonderful care you received. We never get to read about this like like you have wrote.I hope you can fully return to health but it will take time and strength .Mentally maybe it will stay with you.
Thank you for posting. I have wondered lots about how coronavirus would affect APS and those already on blood thinners. As Covid seems to have some kind of sticky blood onset I have wondered what it would be like for those already with sticky blood. It sounds like you have had a terrible time and perhaps a lucky escape. I am so pleased to read that you are at home and starting to feel better. Keep up the good work and thank you for sharing.
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