Coronavirus/Covid-19 Discussion

General
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Hey guys! :heart: :heart: :heart:

I’m wondering in this chaotic and sad time for all of us, how the people with AVM have been coping during this time. Have any of you gotten the virus? How has it effected you?

I’m a little concerned as there is not much information on the virus and how it could effect people with certain chronic conditions. Does AVM fall under this category? I still have to come to work at the moment with 2 others while everyone else in my office gets to work from home.

I have a cerebral grade 5 AVM. Haven’t had any complications in about 5 years now. I’m 28 years old. I live in Los Angeles.

Please use this space to talk about the virus as it would be nice to connect with fellow AVMers here. Hope you are all well and I wish you health and happiness.

:smiling_face_with_three_hearts: :smiling_face_with_three_hearts: :smiling_face_with_three_hearts:

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We are just a few days in to shut downs here in Manitoba and just jumped form 8 to 15 today, certainly early stages. Schools scheduled to end on Friday until further notice. Hockey is cancelled so you now its serious! I’ve returned to a life I had retired from and am coordinating emergency response capabilities, dealing with reduced service to the public with a goal to have capacity to respond to the really serious events. Going to be a challenge in the coming weeks I do believe! Wishing everyone the best in now adding this to all that is going on. Social distancing and hand washing! Take Care, John.

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This whole COVID19 thing is kind of freaking me out (and that doesn’t happen that often, but occasionally). My AVM started in my left neck and spread down into my shoulder, very close to my spinal cord and up into the left side of my brain. I have a substantial amount of numbness and nerve damage. Specifically, my hypoglossal nerve (left side) has essentially paralyzed the left half of my tongue. My left vocal cord and portions of the esophagus and trachea are paralyzed. Yeah, I speak a lot more clearly on here than I do in real life. In addition to the hypoglossal nerve, the phrenic nerve on the left side is damaged.

So, I have a diaphragm on the left side that is damaged and according to my pulmonologist, my lungs are basically, well I’m basically operating on 1 1/2 lungs. Yeah, I’m special that way.

With the difficulties speaking, breathing, swallowing… my pulmonologist said that I’m not at any increased risk of getting CLOVID19. However, if I do get it, I’m at a 20% chance of it being more serious than it would be for someone who is “normal.”

Since I’m on disability, my life is pretty small in terms of geography. So, I didn’t go out much before and I’m currently staying even closer to home.

In Michigan, where we are, the following is going on:

  • schools are closed until at least April 6. Colleges are all transitioning to online schooling and my daughter’s college graduation, previously scheduled for April 25 has been postponed.
  • All restaurants, bars, coffee shops, etc. are take out or delivery only, no sit down service.
  • All non-essential businesses (not grocery stores, pharmacies, banks and hospitals) are closed.
  • Hospitals are severely curtailing their visitor requirements. Limiting the number, the length, the health requirements etc. for visitors. All optional and non-urgent medical procedures are postponed indefinitely.

My wife is on medical leave and I’m frankly glad that she’s not at the hospital right now - because that’s where she wants to be, her babies need her (she’s a neonatal ICU RN. My daughter is a pharmacy tech. So 2 out of the 5 who live at our house are potentially exposed to the virus when they are at work. And then I’m at risk for a worse case of it because of the AVM.

I expect that we are going to continue to see more and more shut downs and cut backs and further economic hardship from it. Right now, I think the biggest concern is that this is going to ramp up too far and too fast and the medical system is not going to be able to keep up with it. That concerns me - for obvious reasons.

And so I continue my life as a recluse and continually hope and pray that I can stay healthy and my family all can as well.

We’ve never been this way before…

TJ

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I’m not as concerned with getting the virus. I’m more concerned with needing urgent medical care, because over the next 1-3 months, almost no one is going to get prompt medical attention for anything while the hospitals are overrun.

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One of the moderators on the Ben’s Friends mast cell community shared this information, which my be useful reading for some of us here.

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Wow I didn’t even think about that! :exploding_head:

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I’m in talks at the moment about trying to work from home but out here I think our government is reacting too slow as schools are still open… most parents are taking matters into their own hands and not sending their children to school despite what the government is saying… ironically my son has been going to school and developed cold symptoms in the last 24hrs which has been nothing more than runny nose and a cough… praying for no fever but we are keeping him home anyway at this time with no real intentions of sending him back until the government comes around and wakes up… the cases are increasing dramatically here in Australia and all the guidelines such as social distancing etc is proven to not be as practical as some think… all I can do is try to stay safe and keep my family isolated until this gets under control… the US has bans on 10+ gatherings yet Australia implemented 500+ outside & 100+ inside??? The people are pushing for more action but they simply respond with they have to work off the medical expert advice, which is not consistent from country to country… we closed borders down but I think it was too late… we went from 400+ cases to 500+ in one day… that’s an issue for me and the government needs to look at learning from other countries who reacted to slowly and how much they are paying for it now… God bless!

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We are getting pretty locked down here in Manitoba. State of emergency declared and schools now closed for at least three weeks, social distancing encouraged, a lot of mandated closures etc…trying to stay ahead of it all. I’m hoping everyone is doing well, and remember social distancing and isolating doesn’t mean cutting off communication! We all may have more time to communicate. Take Care, John.

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Greetings from Leicestershire!

I’ve been working from home since Tuesday evening. The advice in the UK on social distancing has become mandated as of Thu or Fri. The main issues are companies laying off staff like crazy with some really bad examples of that going on. The UK government has taken some unprecedented steps to try to protect people (principally by paying up to 80% of a person’s wages who is laid off, up to £2500 a month; I think that is amazing and a great bit of social support). But the shops are being stripped of goods as people buy for the long haul.

It’s clearly serious and needs to be treated as such but there are good stories of people making things for free and I think I read the other day of 1,400 companies offering help to the government to make items needed by the NHS.

Stay safe, everyone. I think the stronger we take these restrictions, the quicker it’ll be over.

Lots of love,

Richard

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From what I’ve read and herd is the corona virus is more like pneumonia. It effects the lungs and makes your bones feel week. I had pneumonia when I was 13 years old in the summer out of all the times. Noticed it when I had baseball practice. Just after warming up doing a little pitch and catch my body felt like a ran a marathon and was exhausted. Went told my dad he took me to the doctor and they said it was pneumonia.

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Another thought I’ve got to throw into the mix… quit kissing people for a few weeks. It’s a normal thing to kiss one’s wife or partner but if this thing lies unannounced for a week and you kiss each other “hello” and “goodbye” you’ll pass it on before you know you’ve got it.

Got a tiny bit of a dry throat and cough this evening, so I’ve just shut myself in the bedroom and we’ll see if there is anything more to it in the morning. I’m hoping I’m being overly cautious but who knows?

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Greeting from Germany!
The whole situation over here is getting quiet stressing even though I am working from home (I am 17 years old and still in school :slight_smile: ). Sadly this whole crisis started with carnival and since then got worse day by day. Several regions over here are talking about a curfew (except when you are going to work, buying food or going to the doctor).

I am praying that the elders of our community won’t get ill, that’d be horrible! But at the same time I am worried about myself. I know children like me are most likely to just experience COVID-19 as some kind of cold but surely not in my case or others that already have chronic conditions. Other than my large AVM I also have a hearth condition called “long QT-Syndrom” and last year I experienced a spontaneous pneumothorax that leaded to me staying in the hospital for 5 days getting oxygen (10 liters per hour).

So my hearth and especially my lungs are a problem in terms of covid 19. My mother works at the local hospital and got sick a few days ago (we do not know what caused her symptoms yet) but we are really concerned right now as she is getting worse and I can’t really protect myself.

Well, let’s hope this whole crisis is over very soon and the world can have a gasp of relief.

I hope you guys stay happy and healthy in this problematic situation. :slight_smile:
Jonathan

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Jonathan, it is good to hear from you, though your situation sounds very concerning. I can only think if you can stay in a separate part of your house or flat and if either of you need hospital help that you get there earlier in the queue rather than later!

Very best wishes!

Richard

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This has proven to be quite challenging on so many levels for everyone all over the globe… Ive had my wife not feeling the best also and have done my best to try and distance myself as best as possible… stay safe & healthy ppl… God bless!

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Hi all! Wondering how everyone is doing? We’re continuing social isolating here in Manitoba in the spread has been slow, fingers are crossed! I’m not much of a TV guy but was taught how to access Netflix and we watch an episode of Brooklyn 99 every night, seems small but has provided some comic relief for sure. Not quite dinner and a movie! Trying to stay active! Might even tackle a spring clean of the garage…I have found that something as simple as sitting down and watching the noted TV show, which was something totally new, helped in the adjustment. I look forward to tonights episode. Take care everyone, John.

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John, Hi!

We are doing fine here so far, thank you.

It’s a strange existence, isn’t it? The BBC have showed a film through the evening on BBC 1 for the last two or three Saturdays, I think because football or other sport was cancelled. I have to say, it has transported me back to childhood, having the family settle down on a Saturday evening to watch a film. It used to be called “Saturday Night At The Movies” back in 1970-something. Quite a nice link back to a simpler life. Though the 1970s were hard for the adults: my dad went from job to job as the boom and bust of the 70s rolled on. So long as brown is never seen again as an appropriate colour in a bold, abstract wallpaper pattern, I guess we’ll be ok! I’m not sure we should allow everything to revert to the 1970s.

I’m hoping that the vast open spaces of Canada provide you with some natural isolation and will limit or slow any spread chez vous.

My dry throat / cough on about Tue or Wed came to nothing… felt fine in the morning, so more relaxed about that. All parents, in-laws and other vulnerable folk chez nous still ok, so all good so far. I do think this is going to be quite the long haul. I rather assume that the degree of lockdown in China will have been well above anything that European or North American populations would put up with, so I’m sure we will be in for a longer plan than China seems to have got away with.

Stay strong everyone! Stay well!

Best wishes,

Richard

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I live in Michigan. Fortunately most of those are on the opposite (east side) of the state. I have not left the house since March 13, other than to walk the dogs…

TJ

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Glad everyone is hanging in there, I live in South Jersey and now New Jersey has the second most cases right behind New York. I am petrified of this virus and what it can do to me, but more so scared about my mom who is elderly and a heavy smoker. It’s just her and I here at the house and if something happened to her, my nurse my caretaker my rock my everything I don’t know what I would do. We have been on lockdown here going on about a week and a half now. I have doctors appointments I must go to where everyone wears masks and gloves, and I still don’t touch anything when out in public. I still however have not hugged my mom in two weeks in fear that I have it and are asymptomatic and I don’t want her to get it from me since I am out more than her. We work in the same office also which is shut down until April 13, we sell hearing aids and do hearing tests but they are considering themself and essential business here in New Jersey, which are the only businesses who can stay open. None of it’s employees believe that we are essential and should be open that soon, so hopefully it will be extended further out since the governor just ordered all schools to be closed until at least April 17. I just applied for unemployment today, since our work is furloughed for two weeks. This is really really scary, I’ve had several breakdowns now with my mom where I have cried because I’m so uncertain about the future since we have not even peaked here in the state yet. Just three weeks ago we were living our life as normal, it’s insanity how much this has devastated our life in such a short amount of time.

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Jeanine,

You are definitely not alone in your situation. My sister is in a similar lockdown situation with her daughter and my wife is beside herself regarding how on earth we look after her very aged parents. For the moment we are doing the only thing we can, which is to lock ourselves in and do the very minimum of basic food shopping.

I hope your work situation stays shut: that’s pretty much what my wife needs, too. In our case, we have enough money that if this thing goes on for a couple or three months, we’ll get by ok money-wise even if she loses her income. I hope your unemployment comes through ok. Are there special claims you can make in the US for loss of income from coronavirus? There are definitely some provisions in place for the UK.

Wishing you the best as always,

Richard

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I read people with neurological disorders are at risk. I work in a grocery store and they are letting people at high risk have indefinite time off. I was told to check with my doctor so I’m going to find out then. My avm was removed a long time ago and I am still quite young so I think I’d be fine but it’s better to be safe than sorry.

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