I was triple-vaccinated (with Moderna) as of last week when the Covid-19 virus finally caught up with me even though I've been extremely careful, and although my symptoms were mild on Thursday, Friday and Saturday (12/23-25/2021) -- I thought I had come down with a bad cold, that's all -- during the course of that Christmas Day I started to feel differently.
Therefore, I dusted off my HemoCue and noticed that, as the day progressed, my Hgb readings were steadily rising from the usual 15 range to 16 and heading toward 17 g/dL; it was increasingly harder to prick myself and draw a couple of drops of blood for the HemoCue analyzer; my blood-pressure readings were steadily falling while my pulse was speeding up; and my arms and especially my lower legs were getting progressively colder. That combination rang alarm bells in my head, because in years past these have been tell-tale signs of an SCLS episode in progress.
I then tested the content of my nostrils with a Covid home tester, and I got a positive result. (My wife had also been under the weather, but when she tested herself, she came out negative for Covid.) To confirm this result, I retested myself, and again I tested positive for Covid. The preliminary conclusion: I had Covid and the virus was likely provoking an episode of SCLS, as many of us rightly fear could happen -- and as in fact it has happened, sometimes with lethal consequences, to unvaccinated individuals who were or were not yet diagnosed with SCLS, and who for the most part were not receiving IVIG on a regular basis. [For early warnings on this, see https://rareshare.org/topics/1993]
[The experience of a member of our community who was unvaccinated against Covid but on 1 g/kg of monthly IVIG in March 2021, when he caught the Covid infection and it triggered an episode of SCLS, is described in detail in https://www.europeanreview.org/wp/wp-content/uploads/5922-5927.pdf His Hgb measurement upon admission at 3 AM was 17.3 g/dL and it rose dangerously to a peak of 21.7 by 11 PM that same day. His albumin content dropped from 3.0 g/dL to 2.6. He was administered 2 g/kg of IVIG and his Hgb went back down to a normal level of 15.3 two days later, and his albumin normalized afterwards, marking the conclusion of the leak phase of his episode of SCLS.]
At that point in the late afternoon of Christmas Day Saturday, I contacted my anchor physician, with whom we had an understanding that if I ever tested positive for Covid, and developed symptoms of a capillary leak episode, I would call him and he would get me admitted immediately to the (major New York City) university hospital with which he is affiliated, for expedited treatment first and foremost with extra IVIG.
[Nearly two years prior, in late January 2020, a flu (Influenza A) viral infection had precipitated an episode of SCLS in me a few days before I was due to receive my regularly scheduled dose of IVIG, and it was with 2 g/kg extra IVIG that the episode had been successfully treated, see https://rareshare.org/topics/1967]
My doctor kept to the plan: I was tested for multiple viruses in the Emergency Room and was found to be positive only for Covid; my Hgb upon admission at 9 PM was 17.1 g/dL (and it would reach a modest maximum of 17.6); and by midnight I was already being treated with 1 g/kg of IVIG, followed by another 1 g/kg the next afternoon. (In this instance, I had been due to receive my regularly scheduled dose of IVIG eight days later.)
My other lab results confirmed a systemic capillary leak: e.g., whereas my albumin level was 3.7 g/dL upon admission, it subsequently dropped to a low of 2.5. By Tuesday (12/28) afternoon, however, the leak phase of my episode was over, my Hgb reading was down to 14.2 g/dL, and I was discharged to isolation at home exactly 72 hours after admission.
During my hospitalization, my wife also came to test positive for Covid, both by a rapid and a PCR test, so we are "lucky" to be isolating together with very mild Covid symptoms. As far as we are concerned, the vaccinations are protecting us precisely as they should.
Since I believe that sooner or later we are all going to be infected by some strain or another of the Covid virus, my strong recommendation to all SCLS patients is that you too enter into a similar understanding with your anchor physician, namely: that if you catch Covid and also develop symptoms of an episode of SCLS, you too will be admitted to a hospital and be administered 2 g/kg of IVIG as rapidly as possible -- and regardless of when you are due for your next scheduled IVIG infusion cycle.