While most of us, if not all, are self isolating, some of us are going to get the virus in the future. I would like to see aPost or link tracking this virus within our community and how they fair. At the moment it is all ‘what if’s’, with the medical profession split on the affects of covid-19 on the people diagnosed with MPN, hence why some of us are told they are extremely vulnerable and others are not.
I would love to here from anyone, or they know of someone with MPN, who has had the symptoms and come through it as it could help alleviate some of the concerns of this virus within our MPN community.
Stay safe and take care.
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Cambersand
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As regards to your post, it’s all a bit of an unknown quantity really, back in February and most of March I was extremely unwell even my husband who had been in the City late December and again in January, we both came down with what we thought was a severe cold that just kept on giving, symptoms were a very dry unproductive cough, sore throat, awful headache, temperature, a very strange taste in our mouths, also I had very red sore and inflamed eyes, it felt like I had glass in them they were that sore. and for my husband he could not sleep lying down not that either of us could sleep, the last thing for me was that I had my Haematology app on Wed the 25th of March cancelled but had to go to get bloods done then more or less as I got home from Hospital my Haematologist called to have a telephone conversation, he told me that my white platelets had really spiked and was I still taking my Hydroxycarbamide which of course I was, to which he said that I had an infection, and asked me how my health had been of late, well told him about how I had been the last six weeks, to which he said that he felt that I had, had Covid 19 in a mild form and that my body had been able to cope with it, and I have now got to get bloods done again in May.
About an hour later I got a call from my Chemo nurse who told me that I must make sure I self isolate as they think that I have had Covid 19 which I had not felt like going out anyway so had already done three weeks, but my husband has to go out to do shopping as we have been unable to get home delivery, so she said make sure he washes his cloths and showers once home, which he had been doing.
The last straw for me was I had to make a dash to my local eye hospital on the 28th as my eyes had become so painful I could hardly open them, they were really good very thorough, they seemed to think that it was caused by a virus that had attacked my eyes, which in turn had caused the gel to start to come away from the retina, in both eyes and as it was virus related there was not a lot I could do other than use cooled boiled water and bathe them four times a day and use Thealoz eye drops, thank god they are near enough back to normal.
The tale of this long saga, is that My Haematologist said unless I was tested for Covid 19 to see if myself and my husband have had it, they will never know. But that if I have had which he thinks I have my body has coped with it, and I must continue with my Hydroxycarbamide without fail.
Let’s hope that they find a test to find if you have had, and will be immune from Covid there after.
A number of my work colleagues have also contracted a virus, all similar time’s, nothing like what they have experienced before, but currently they don’t know if they have had the virus, as they have not been tested.
Until they roll out a testing regime to see who has had or not had the virus, will be the only way to distinguish it from other ailments.
Very true. As my Haematologist said he felt sure I have had as there is no other explanation for the spike in platelets, but until they get test I will never know.
Hi Jean I dont know if you've seen my post re the virus my family experienced in Oct/Nov last year. I had major problems with my eyes too which I was told to treat with extra eye gel which I have to use anyway.
I am being cautious and would never disregard the current guidelines but I think weve had it as well.
Got my letter today from my Haematologist listing my blood test results from the 25th March all my Platelets had gone up not just the whites, he said that as I had no other symptoms he presumed that I had an extremely heavy cold, but would never know unless tested for Covid 19.
Feeling so much better but eyes still a little sore.
Hi , At the moment I would say no I haven’t had it. OR have I🤔?
It came to the news before Christmas and about 4 weeks prior to that I went down with a mega mega sore throat. Also lost my voice. This lasted about1 week before I went to the doctor and even then I had a temperature. Antibiotics made a huge difference to my throat. 3 weeks after that I still had a croaky voice and dry cough and contacted the doctor again whose advice was to ride it out.
It's hard to say really🤔 because there's all sorts of things flying round during the winter that have similar symptoms. I have however read a couple of posts from people in this community that suspect they may have had it with one being Raphael as mentioned in an earlier reply.
I have been suspecting for some time now that the "bad head cold" and cough I had in mid February may have had something to do with the coronavirus/CoViD19. The story may have begun when I visited the big hospital in Brighton on 10 Feb; at about this time there were reports in the media of a man from Brighton, who had been in Singapore then France, becoming one of the UK's first officially recognised cases of CoViD19. I started to feel significantly unwell on 13 Feb (feverish etc), so much so that I rang the haematology helpline; the nurse advised me to continue taking my medication, including the Hydroxycarbamide (HC) chemotherapy.
On 14 Feb I had to go out to buy food, locally to where I was staying. I think I may have been hit by another virus (or did the first infection intensify?), as on about 17 Feb I had more feverishness and started to get the cough. This cough had something in common with the sort of persistent "hacking" dry/mostly unproductive cough that I have occasionally had before as part of a bad cold but it was also somehow different: eating seemed to trigger it and for some days every meal became a fit of coughing. In bed it was hard to find a position in which I could avoid coughing, so sleep was not easy. The bouts of coughing left me feeling that my chest had been pummelled (but I must emphasize that I did not experience the "feeling of broken ribs" pain described by Raphael - whatever illness I had must have been much less severe than his).
There were various other symptoms, many of them typical of a bad head cold, such as sinus and back teeth pain and a slight runny nose. (I longed to take an Ibuprofen tablet to reduce the characteristic "inflammatory" pain but did not do so, recalling from the product info that comes with my Aspirin 75mg EC that one should not take another NSAID at the same time.) Another symptom (again one I have had before with bad colds) was partial loss of my sense of smell; this seemed to return in stages, with "lemony" tangs leading the way, so that the smell of a familiar talc was different for a while, the "lemony" component coming through clearly while others remained subdued. Plans to make social telephone calls were abandoned as my throat was sore and my voice was too hoarse. I did experience a little shortness of breath and a slightly increased difficulty in swallowing ... but nothing serious.
Other symptoms were unfamiliar to me. I got a nasty taste in the back of my mouth and a sense of possible acid reflux; there was even a brief strange pain in my left chest only (unlike the "pummelled" sensation which was all over the chest) - could that have been heartburn? (I don't think I have ever experienced gastric acid reflux in a serious way before so I don't know what heartburn feels like.) At the time I assumed that these effects were caused by some things I had eaten (ripe pears, a vegetable curry) ... but now I wonder if they were connected with the viral illness. I say "viral illness" because it never went into the typical bacterial overlay phase: there were no acres of paper tissues used to remove yellow/green mucus etc as I would have expected from previous very bad colds. (Does HC help here, acting as a proxy antibiotic?)
I had no direct contact with any other person until 21 Feb, when I needed to go out to buy food again. Unlike others who have described possible CoViD19-related illness, I did not suffer crushing fatigue: for example I was able to sit at my PC and research subjects such as "cough" but I did not feel well enough to go out before 21 Feb and wanted to avoid taking on any more viruses while I struggled with the ones I already had.
A striking effect of the illness was its psychological impact. I felt even more de-motivated and ineffective than usual and had the sense of being thrown back to an adolescent/young adult state - but not in a good way (I'm actually 60!). I remembered the almost continuous colds I had at school, the typical three bad colds a term when I was an undergraduate, and the struggle to keep at my studies while feeling rather wretched ...
My naïve idea ("Hypothesis 1") was that my immune system must have been weakened by the chemotherapy. I now know that this is untenable: I had only been on the HC chemotherapy, at a low starting dose, since about 24 Jan so it was unlikely to have had any serious effect on my immune system by early to mid Feb. In any case, Hypothesis 1 was completely refuted when I had the first review meeting with my Haematology Clinical Nurse Specialist on 27 Feb. The results of the latest blood tests were discussed: I had given samples on 6 Feb and 25 Feb. My white blood cell count had actually increased, from a respectable "4 point something" on 6 Feb to "6 point something" on 25 Feb, consistent with the immune system fighting off a virus attack; the nurse explained that there would only be concern if this count were down to "1 point something" or less. More alarming was the platelet count. In mid January it had been about 875 and on 6 Feb, after 2 weeks or so of the HC chemotherapy, it had dropped (promisingly) to 675 - but by 25 Feb it was over 1000, my highest ever result. Again the nurse said that this would be expected if the immune system had dealt with a virus attack.
With Hypothesis 1 in the bin, I only gradually began to develop another idea ("Hypothesis 2") to explain why, immunologically speaking, the recent illness had made me feel like a 20-year-old: suppose that the virus (or one of them) that had infected me was a really new one, so that even a 60-year-old would not have encountered it before. Then, just like a much younger person's, my immune system would have to fall back on "improvisation" (so to speak), rather than being able to rely upon its existing "knowledge" (built-up immunity) based on years of previous experience of viruses. [I am still very much at the learner stage in understanding the issues relevant to MPNs, the immune system, etc but what I have read so far suggests that the difference here is between the "Immunoglobulin M"/IgM response - the body's first line of defence against a new virus - and the mature "Immunoglobulin G"/IgG response once immunity has built up.]
Speaking of a really new virus that was active in early to mid February 2020 ... there is probably only one show in town: the novel coronavirus behind CoViD19. Of course I can't yet prove that this new virus caused my illness and I hope that I will reasonably soon be able to have a blood test to see if I have the relevant antibodies. Perhaps it's vanity on my part but I rather like the idea that I might be an MPNer who has survived CoViD19, albeit only a mild form of the illness.
Thank you for reading this far! The fact that you have not given up long ago encourages me to hope that you found something of interest in my ramblings ...
You might be interested in something that I read on the Worldometer website (a good source of statistics, graphs, news, etc on the coronavirus pandemic).
It was reported that:
"A study by the University of Bonn has tested a randomized sample of 1,000 residents of the town of Gangelt (an epicenter of the outbreak in Germany) and found that 2% of the population was currently infected and 14% were carrying antibodies suggesting that they had already been infected — whether or not they experienced any symptoms. Eliminating an overlap between the two groups, the team concluded that 15% of the town have been infected with the virus"
How soon will such tests and studies be available in the UK?
Had a look at the worldometer website. Some good comparisons.
We are all focusing on the tip of the iceberg as governments around the world try to come to terms of the effects of this virus on mainly the older generation.
As the WHO said, testing is the key to unlock the understanding of this virus.
Thank you for the post, it was not long or rambling , it was your experience and the sort of answer I was looking for. Some interesting points noted. When they roll out a test , it will be interesting to see who has had the virus.
End of Feb I had cough and kept getting like not flushes and my nose felt like it was burning inside so painful after about a week I lost my taste and smell after another 2 weeks decided to ring gp as taste smell hadn't come back he was sure i had covid but couldn't test to see but said could take up to 6 weeks for taste and smell to come back it's coming back I but still not right on well I have ET jak2 positive he's it is a worry with this so still don't know if had it or not
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