25 April 2022 A year and a bit on from my last comments here, and now two years since I had Covid so I thought an update was due. The somewhat milder symptoms of Omicron for most people means life is getting back to normal although more people have Covid at any one time than ever before – it seems the dread has gone out of it and we’ve gone from a situation where there were no treatments available to a range of very effective ones, and although ventilators are still occasionally necessry its mostly handled by the pressure fed oxygen masks if oxygen levels fall, and there are now something like 30000 unused ventilators in store – it was always going to be impossible to find enough staff to staff them, but I suppose it was a blind reaction. Going back to 2020, I pursuaded Penny, my wife, that she should get an antibody test as she had been looking after me and didn’t appear to have had Covid. The pharmasist who gave her the test was puzzled because she only had faint lines and said he had only seen that once before, which turned out to be me, although at the time he didn’t know we were associated. So she must have had it asymtotically and at a very low dose? I seem to have made a pretty good recovery, although when I had a CT scan for my CLL review the radiologist said that I had characteristic Covid lung damage – not a lot but noticable on the scans, so I guess my lung function is less good than it was. I’m really a bit unsure about how vulnerable I am if I get it again – I have had 3 jabs and the booster, and have the Lateral Flow test standing by to get me a rapid antibody infusion if I do get it, but I feel that at my age every year/month/day is too valuable to spend in a sort of dread and isolation, so I’m relaxing a bit, although I do avoid crowded spaces and big gatherings and try to keep my distance. I am going back to running my STEM club at the primary school, which will inevitably carry a risk, but hey, I need to do things! I’m reassured by my Oncologist who tells me he has 5 CLL cancer patients with Covid, and the antibody jabs they give the over 70s are working for them, and none are seriously ill with Covid. My CLL is now being treated with Acalabrutinib – a rather expensive wonder drug that has no side effects for me – I’m grateful for medical science twice every day when I pop a £100 pill. I am incredibly lucky with my CLL, because apart from swelling of my lymph nodes (now normal) I’ve had no noticeable symptoms from the CLL or the treatment. My Oncologist is frustrated because he is trying to run a trial on his patients to see if after a few years on Acalabrutinib they could stop taking it, with the option of restarting it if symptims reappear – however he is up against a problem, because NICE won’t let the NHS give Aalabrutinib to anyone who has had it before and stopped, so none of his NHS patients dare stop taking it, so his trial can only involve private patiens who are not so restricted. Daft, as the NHS could save a lot of money if it was possible to stop and restart if that turns out to work.
28th December 2020 – I found a website that explains the gut feeling I had about the early medical response to Covid in the UK on STATNEWS.COM – google “Ventilators are overused for Covid-19 patients, doctors say”
12th August – Had an antibody test yesterday (£69 @ the local pharmacist) – very quick and simple finger prick and a drop of blood on a plastic strip and watch for lines in window – at first nothing appeared except the control line and I was told that I hadn’t had Covid, but then the two lines appeared faintly and bamboozled the pharmacist, who said I had definitely had it but he had never seen a result like that. So my level of immunity is probably uncertain! I will try hard not to get it again! I did manage 90 lengths of the bag today so I guess I am reasonably fit.
7th July – Back from our sailing holiday – I was well up to sailing the boat, although we had 3 younger crew on board to do the grunt work like winching- well, I had to leave something to them! I think I am almost back to my previous fitness – I did manage 50 lengths of our 10 m swimming bag today, and I’m aiming for 100 per day by next week….. I came across a couple of studies of people who, like me, have CLL, in relation to Covid-19 which were a bit depressing – we stand a higher chance of needing intensive care, and a greater than 37% mortality if we go into an ICU. Which makes me realise how lucky I was to come out of it alive and with no apparent long term symptoms – its surprising and worrying how many people of all ages end up with very long lasting after effects. I just hope I don’t catch it twice! If I hadn’t already had it I’d be feeling a bit paranoid .I’m about to book an antibody test with the local pharmacist to check my antibody levels. I still haven’t made it to 65 Kg – I’m stuck somewhere between 63 and 64 Kg which is OK as its more or less in the middle of the normal BMI (body mass index) range. My saturated Oxygen level is usually around 97 or 98 and my blood pressure is at the level it was two years ago – 122/65, which BUPA says is OK at my age, so I hope all is well.
28 June – a month on from my last post here. 6 weeks ago I had lost around 10 – 12 Kg and was pretty much a skeleton at 55 Kg, as I didn’t carry much spare to begin with. I couldn’t sit on a kitchen chair without a cushion as I had no natural padding left. I started an eating campaign – cooked breakfast every day etc and initially put on weight fast and started to exercise a bit as I got my strength back. I have now put back a good 7 Kg ( mostly muscle) and my weight gain has slowed somewhat, but I am still trying to put on 50 to 100 grams a day and will be glad to get to 65 Kg . I got interested in finding out how much food, particularly protein, one needs. One has a BMR, a Basal Metabolic Requirement that depends on height and weight – mine is about 1400 Kcal per day just to keep my body going. Then you add a percentage depending on your level of activity – in my case that bumps it up to around 1700 Kcal/day. The proportion you should get from protein depends on age amongst other things and increases with old age. Mine is 20%, so I need 340 Kcal of protein, which equates to about 86 grams of protein – since I am trying to build, or at least restore muscles (its not clear if you can do more than restore when you get old) I am trying to concentrate on getting enough protein. To put on weight you need to eat in excess of these requirements – the equation seems to be that you put on a pound (440 grams) for every 3500 Kcal you eat above your BMR+activity level over a period of a week. That is equivalent to 2 days worth of basic food requirement, so to put on 1 lb per week I need to eat 9 days food every 7 days – if I wanted the excess to be protein I’d need to eat almost a kil0gram of protein, which corresponds to around 3 Kg of meat. I know – sounds totally improbable, and I’ll check the figures again but I think its about right – maybe I’d better move to Texas where 14 oz (385 gm) steaks are considered a bit mean – 8 of them would just about do for my 1 lb weight gain! Alongside eating I’ve been quite active and am doing exercises with weights and resistance work with elastic bands ( short bursts only) and doing some exercise each day – walking a mile plus being on my feet all day, or active swimming for 1/2 hour, so I feel reasonably fit. I’m not sure how fit I’d be if I hadn’t got a bit obsessive about eating and exercise!
29th May I think I can now safely say I’m finished with Covid. Its a pretty nasty new virus and it seems to have taken few weeks/months for the doctors to get a handle on it. In the beginning they didn’t understand the effect Covid was having on Saturated Oxygen levels, and bunged people on ventilators willy nilly, and are now suggesting that this may have been wrong in some cases. They now give Oxygen earlier and keep the ventilators as a last resort. ( people put on Ventilators have a chance of dying that is a quarter of what it was at the beginning of the pandemic, which suggests a change in outcomes whatever other factors may be involved) In previous uses the average time on a ventilator was 7 days, whereas with Covid it was/is 7 weeks – 7 weeks with strong sedation is itself pretty dramatic. When I got the Oxygen generator I bought a pulse oximeter to measure my Sat. Oxygen level – to begin with it was often below 95%, but oxygen pushed it up to around 97 or 98 % – a more healthy level. I’m not sure the Oxygen was essential for my recovery, but it certainly made thing more acceptable and reduced my anxiety level, but I’m pretty sure I wouldn’t have got it from the NHS – there was (is?) no halfway house between being ‘on your own’ and being in hospital and on the treatment conveyer belt that all too often put people on Ventilators. ( In ‘normal’ respiratory disease a Saturated Oxygen level of 93 is taken as an indication that a ventilator may be necessary).
2ND May. The encouraging thing is that every couple of days you notice something that is improving in your recovery, and only then do you realise how bad it had been. I’m sure if you had asked me a few days ago I would have said I was eating well, but in the last day or so I realised that my appetite had been a lot worse than I realised. All encouraging stuff. I now have to persuade my oncologist that I am not fading away! I bought a posh set of bathroom scales to track my weight but I can’t yet take any comfort from them. I’m just puzzled at how much my weight varies from day to day, even taking into account the obvious variables!
30th April, Well, after just over 6 weeks since I got symptoms I am beginning to feel almost human again. I’m not sure how much weight I lost- probably around 8 Kg. so it will take me a while to get most of that back. Hard to remember how nasty it was at the time! I’m up and about all day and am finding that I am unable to avoid domestic chores. Oh well, no gain without pain!
15th April, Managed to sleep last night but it left me feeling tired all day – strange! Anyway I’m sort of getting to grips with things, or at least I hope I am! I will have to find something to occupy my mind before I go stir crazy……… I can understand how it got Boris J – and he has s few years on me!
1th April. The oxygen concentrator is a neat gadget. It strips nitrogen out of the air to give around 70 to 80% oxygen at up to 5 litres a minute. I think I am getting to grips with most of my problems – I could even taste coffee this a.m. But I still have difficulty sleeping…. Watching all sorts of iplayer and youtube junk. A friend had been raving about ‘The Repair Shop’ series on BBC 1, but I thought it had too little technical content and far too much emotional clutter. Shame as it could be good Most of the you tubes are similarly disapointing – I’ll just have to make some more f my ow,
10th Got an Oxygen concentrator from a friend so I can trickle Oxygen up my nose at night and, I hope, get some sleep. Before that I used the oxygen cylinder from my lead welding outfit to give myself bursts of oxygen – going up half a flight of stairs had me lying on the bed gasping for air for 5 minutes – not nice – a quick squirt of oxygen into a plastic bag and breath that speeded recovery! I seem to have lost up to 20% or my bodyweight in the last 4 weeks, so I’m trying to eat as much as possible -talk about turkeys and Christmas! Giles is locked down in his flat in Cambridge, and building climbing walls on all the surfaces that are strong enough -Ive challenged him to build a compete climbing wall that will fold up into a matchbox.!
Now made it to 9th – I think things are slowly improving, and then I can’t sleep for 24 hours. At least there is better information out there and my GPs seem to know what they are dealing with, which is pretty re-assuring. Hang on in there and EAT and BREATH.
Its 6th April and things haven’t moved on much – normal temp but absolutely wiped out if I try to do anything except lie down. any effort leaves me completely breathless. I am just about managing to eat, but I doubt that in reality it would keep a knat alive………. Still overall not feeling too bad……… Not sure what the problem is so will have to talk to my GP if I can….
When I first got feverish around Tuesday 17th March I started to look at the ‘official’ NHS symptoms and was confused that I seemed to have missed out on sneezing some exact number of times a day and coughing for so many hours. So did I have COVID-19 ?. As a 78 year old with Leukemia (CLL) I new I was a high risk patient, although a fairly fit one with minor CLL symptoms. How long might it go on for? and what else might turn up as a symptom? My Oncologist, and the CLL community in general don’t yet know if CLL is likely to make COVID-19 worst or better – COVID-19’s target is to set off a massive immune response in the respiratory- maybe it would offer some protection. Anyway here is what happened to me. The first phase took about a week, Fever 38 to 39 C, aching lower limbs and loss of appetite, or more specifically your mouth moisture all disappears, making it difficut to eat solids. I found it difficult to get my temperature comfortable. After that I had a couple of days of mostly near normal body temperature 37.2C etc. I was told by the ever helpful 101 service that I might expect breathing difficulties and temperature from day 8 (ish) but the breathing difficulties didn’t occur. (CLL bonus?) I discovered over the next 6 days that I could be comfortable lying in a more or less unheated (17 -18C) bedroom with an open shirt and pants without feeling feverish. After a few more days my temperature has come back to normal for most of the time. Overall I’m impressed with 101 and with my GP and Oncologist who all seem to know the pattern – just a shame our official NHS advice is is nowhere near as good. It is a great shame the NHS thinks it knows all the answers – it has massively screwed up on testing by not buying reagents in time, not really knowing what it is going to do with its testing, and by insisting only PHE could run tests (at Colonwood)- a decision now revoked under government pressure to include commercial labs. We love our NHS, but just don’t look too closely at the moment if want to avoid disappointment! Good luck if you get it.j
I think mine started around 17th March – no real idea where I picked it up, but I was in a classroom for an hour a few days before that.