Thanks very much for your messages Areilbatt and Kevin. Yes I think I will take the approach you mention and try and live separately inside our home in the first instance and reconsider if the infection rates increase but our children still in school. Kevin your situation does sound tricky with older children at home and also your wife in educaton too. I'm glad to hear you are able to continue working from home and you have good space to isolate as much as possible at home. Yes as my children are young, the risk should not be high, that is something I can bare in mind. The school are also staggering start and finish times which should help with drop off/pick up of the younger ones.
In terms of these episode while on the full recommended amount of IVIG and higher I have a few ideas but not sure. I realise it is very strange as it works well for others. One thing, although I haven't had any Covid symptoms it's possible that I came into contact with it at work. Following my first emergancy hospital admission while on the recommended dose in March, I returned to work from home as my workplace had sent employees home to work. I found out then that a colleague who sits a few metres from me had Covid symptoms and later tested positive for the virus. This is therefore a possible reason I've been having problems although I had felt symptomatic the day before my infusion the month before also. When it became possible to have an antibody test in hospital in June I took the test but this was negative. I understand now that a T cell test is more accurate but I don't think they are available. My only other idea is that it has been quite stressfull in lockdown and I know emotional stresses as well as physical stresses seem to trigger my leaks. My doctor has updated Dr Druey though not made contact with Dr Amoura before, though I have now passed on that contact to him.
Yes perhaps the IG levels varies with different people. I have had two types of IVIG since I started depending on which is available either gamunex or flebogamma, also my dose had reduced by a bottle after the first 6 months as I'd lost some weight. One thing I have notice through this time is that I know very clearly when a leak is starting. As well as the thirst, heavy/achy arms and legs and feeling tired, my resting heart rate increases. I took my blood presure and heart rate daily over a number of months and for me my resting heart rate is always in the 60/70's. The only time when it went into the 80's was when a leak was starting and if it went into the 90's I know I should be in hospital. My heart rate is rising to support my blood pressure which had been dropping - then my blood pressure goes up a little. Also IVIG is very effective to stop the leak when it starts. When I went into ICU in March apparently I was in the same condition when I went in the very first time when I nearly died, This time they had started the IVIG treatment and I quickly got better and was out in a few days. I do wonder though if I have been in a cycle that the IG levels in my blood are reduced as it has somehow got used up treating a leak and then not lasting as long to act in a preventative way until my next infusion.
Thanks again for your response.