Was curious how many of us MPN-ers have had Covid? I saw some older posts like this, but with this variant thought I’d ask again.
Hopefully everyone has done alright if they did. I’m 38 and ET is my only health issues - platelets around 1.2 million, triple negative, on aspirin only as considered extremely low risk
I’m in the US and stayed inside for almost a year and a half, even kept my kids how half of school last year. This year things had seemed better. I got my vaccine months ago (Johnson and Johnson) and sent my kids back to school this month. I even went back to work 3 day’s a week at a preschool
Well, now all the news is is death, death, death with this delta .. I have anxiety anyway, and this is making me so depressed. I have cut off Facebook and now refuse to watch the news - US news is “meh” at best anyway.
Just curious how you all have faired during delta?
Good luck to all of you 💗
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I'm 73, living in rural Wales, diagnosed with ET in 2016, which in 2017 changed to MF. Being retired I was lucky that we could isolate, so have avoided Covid so far, but the infection rate has shot up recently as movement and exposure restrictions have been lifted, so we are avoiding contact except very local friends again. We've had 2 jabs so far, but don't know how effective they arte. We haven't met up with family for 18 months, although Skype and ZOOM have allowed us to keep in regular touch with them in other parts of the UK. Hopefully once the holiday season has finished infection rates will drop again.Do you know what caused your ET ? mine seems to be from exposure to petroleum products.
So glad you have been safe! It was such a rough year and a half of not seeing people, or doing things, especially having 3 kids (10,8 and 5) who had their whole lives changed. I hate we seem to be going backwards again.Not sure about my ET. I had my first ever blood draws at 35 and my platelets were high and that’s how it was discovered. The only few symptoms I’ve had I have had my entire life so it is possible I’ve always had it and just never know. I’ve been very blessed with minimal issues bcnof it.
Stay safe and good luck with your MF! Sorry it progressed, but I hope they are able to keep you well and feeling good💗
Thanks, I hope you keep your ET under control and manage to let your children live a full life, but hope this only a temporary situation. But then every generation seems to go through some at least one crisis situation. My grandmother was nearly wiped out by the smallpox epidemic, but was sent to live in a rural farm, and then the first world war, my parents lived through the second world war, and then there was the threat of nuclear war in the 60's, and so it goes on. But as they say if it doesn't kill you, it makes you stronger and appreciate what you have.Anyway , best of luck to you and your family, things can only get better.
Hi, I’m new to ET and my consultant said that no one knows why people get it. From reading ur post it sounds like there may be known causes. Do u have any info on what these are? Many thanks x
The dangerous component of petroleum products is Benzene, but it is also still used as Benzene compounds as a preservative with fruit and fruit products, which are apparently unstable and may degenerate into Benzene if exposed to acids such as citric acid. Look for Benz..... in fruit products , Scary.
The people that are dying from Covid now are mostly those that haven’t been vaccinated. My mother, who is 87, and her aide both had Covid within the last 3 weeks but both cases were mild. Both were vaccinated. They quarantined the whole time, and they are fine now. But the Delta variant is spreading quickly and we do know a couple of people who are very sick who were vaccinated, so it’s important to have the 3rd shot as soon as it’s available, since the immunity seems to be wearing off.
Glad your mother made out okay! Especially at her age that is very reassuring to hear... I had the Johnson and Johnson vaccine so no booster for me.. I have read a few studies that said the Johnson and Johnson vaccine seems to be doing well against delta, so I hope that’s correct
I haven't had Covid, but my entire family caught RSV and I was quite sick with it. The moment my symptoms cleared, I went and got the Pfizer booster. Before I knew I had a MPN, I got sick often and had a hard time shaking things . My MPN had been missed for 7 years before I was diagnosed. These experiences make me think Covid would be especially risky for me.
I can understand your anxiety. It is so awful here right now and people are just running around as if things are normal. My daughter is vaccinated and her school has a mask mandate, but there is a group of parents fighting the mandate. I really don't want her to miss out on in-person learning for yet another year. It truly upsets me that people don't seem to have any care for those of us more at risk from Covid.
To answer your question, no I haven’t had Covid. I have ET Jak2+. Like you, high platelets and on aspirin. It’s quite interesting but after my diagnosis 5 yrs ago I delved into nutrition/ supplement research . Since making some diet changes and adding some vital supplements, I haven’t even had so much as a sniffle these last 5 yrs. previously I would have had the usual two colds/ year.
Although a Brit, I have lived in Europe for the last 30 yrs. I am truly grateful I live in a country that respects personal choice, has not terrified it’s population ( I guess as you have stopped watching news you know what I mean) and we have returned to normality. I was in the city yesterday for a couple of hours and saw only one mask wearer. Everyone happy and having fun again. No social distancing.
The only people I know who got sick with it , but all recovered completely are family members in uk, two work as doctors in NHS and they had it early on. My sons wife was one of them but my son never caught it.
I also know of several friends here who took the mRNA injection and have had ongoing health problems since, for months. Personally I don’t know of anyone who actually caught covid here where I live.
Of course that’s just my experience and I realize many others will have not had such a positive experience. I am not saying this to belittle covid but show that we haven’t all had an issue with it.
All our news is is doom , gloom and death. I know this is serious but it’s the only focus of any news station and it’s never about anyone recovering, just those that die. It’s awful
I agree. Plus the govts keep changing the plans. And when they need to change definition of “ cases”, “ herd immunity” etc, to fit the narrative, you know there is a problem. I would suggest you stop watching the news or reduce it to 1x week max. A very good book by Laura Dodsworth called “State of Fear “ helps put it in perspective.
Amethist- my son has ET JAK2+ 1.2 million platelets. He’s 19. He does not want the shot and I can’t say I blame him. Can I ask if you are vaccinated. There don’t seem to be many on this page who aren’t. He is healthy, we take supplements that we’ve read about and we try to enjoy life and not live in fear. We have other preparations should any of us get Covid. He will be starting his senior year of college the end of September. Right now it’s in person, but we’ll see. Glad you are doing well!!
I got covid ,it was worst, I just had a complete blood count my platelets are now in 1.2 million instead of maintaining it around 600K, I think it was aggravated by being positive with covid,
I have had covid and maybe still have long covid! I had ET it has progressed to MF in the last few months , I had covid over the Xmas period was quite ill but never had to get admitted to hospital thankfully . I am 60 live in Scotland.
I’m in Vienna, Austria. From all the hospitalized with Covid, 10% have been vaccinated, with various vaccines. That is, 10% of the vaccinated, contact Covid. They don’t get as sick as the non-vaccinated. Some few do not have coverage after the vaccines. There are tests, but they test for different things. If you’re get tested for immunization, make sure it’s the right test and then be free to live. 😘
I had covid in March 2020, and still suffering the effects with long covid. Chronic fatigue, cardiac issues, can’t work, can’t exercise much etc. Relatively young, fit and healthy prior to contracting it. Only silver lining is that my ET was diagnosed in the process of figuring out why I was so unwell post covid.
Would have assumed that having an MPN was partly to blame for how seriously covid has affected my health, but there’s a huge number of long haulers now without underlying conditions. Best estimates are saying around 10% of symptomatic covid infections are causing ongoing health issues.
Anecdotally the radiologist that MRI’d my heart last week told me they’re seeing multiple cases like mine every day, mostly under 40 without underlying conditions, and worryingly since delta, more young teenagers.
I’m fully vaccinated, choosing to believe I have good immunity, and taking reasonable precautions without living in a constant state of anxiety. It’s a balancing act between living life and mitigating risk I guess, we all have to find a level we’re comfortable with.
I do worry that the focus on death and severe illness, and lack of focus on covid as a chronic life altering condition is giving people a false sense of security.
I am 54 and was diagnosed with what we believe started as ET and progressed to PV
JAK 2 positive. My entire family( husband, 3 adult children and my 77 year old parents last October). I am happy to report none of us have any lasting effects and all of us experienced only regular flu like symptoms.
I had an antibody test done 2 weeks ago and was still showing high levels of the IGg antibodies! So I’m happy to report my family faired well.
Good luck to you all through this difficult time 💕
Hi I have PV and just recovering from covid. First day out of bed for over a week. Double vaccinated and shielded for most of year. Symptoms started 2 days after I had been to a hospital in London. Would love to know where I picked it up. Half people on underground not wearing masks. I do think vaccination prevented it from being worse. Stay safe x
I was diagnosed with PV in 1983, which turned to MF in about 2010. I had shingles in September last year (2020) and was told to have a Covid test and was very surprised when it came back positive, as I was only aware of a very little feeling of irritation at the top of the chest, but felt ok. I have had two Pfizer jabs this year, one in January and the second on April.
I was probably fortunate that it only got me very mildly. I live in the UK, but enjoying a holiday in Cyprus. Best wishes everyone
I have et jak 2 +. I got covud during the 1st lockdown, I spent 3 days in bed, but lost my sense of smell for 4 weeks, i could still taste things but not as well as normal.... I recovered well, then got it again after having to go to hospital , this time I lost my sense of taste, but only for a week. I've now had both jabs, astra zeneca. To be fair, they made me feel worse than the actual covid !!! But I'm glad I've had them....Keep well xxx
Thankyou, yes I was very lucky.... I thought I was just very tired from work... carer in a nursing home setting.... I had just done 60 hours in just over a week, so I thought it was that. But we had a few covid positive people in there at the time, so although we had PPE.... I think I got it from work ....
It was, I was just trying to do my bit, I was told I wasn't vulnerable, but then I got a letter to say I was and should not go out!!! But it was too late.....
I am jak 2+ et diagnosed. I had covid just after Christmas last year. Spent over a week in bed and lost my sense of taste and smell. It took a few weeks to get back to the same energy levels I had before, but I have completely recovered since then. I am double vaccinated with Pfizer. I never had a shielding letter, but I did try and be very careful, especially during the first wave. Like you I work in a preschool and went back to work in September last year. That’s not where I got Covid. I got it from my son who came home from university for Christmas. The delta variant is worrying, and I don’t listen to the news very often, but I do try and lead a fairly normal life, whilst still being careful. I do wish people would wear masks more though as I have noticed that since the restrictions have been lifted here in the UK lots of people have stopped wearing them including in shops and on public transport. Best wishes to you
Thank you! Best wishes to you also. I actually got a call from my boss yesterday that my entire room is now quarantined bc we had a positive student 😩 makes me very nervous
Hi, I had Covid and cane out of isolation about 10 days ago. I wouldn’t even have done the lateral flow test if it hadn’t been for 2 friends who suggested it. I thought I had a cold/ flu. My husband caught it 4 days later and we isolated my son (he only had 1 jab at that time) to his room with a microwave.
Haha he ordered frozen microwave meals and only came down stairs and out through front door to access the garage for them. We all wore gloves and masks whilst walking along the landing as he also needed to use it for bathroom . Luckily enough we have an en-suite.
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