I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: UkrainianTracksuit on February 17, 2022, 06:25:42 AM
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A few days ago (less than 5, I guess) my husband worked with someone that came to work with cold symptoms and was tested at work. That person tested positive.
Last night, my husband came home from work. He had no respiratory symptoms (runny nose, sore throat), but body aches, fever, and nausea. He went to bed and naturally I slept in the same bed together. :stressed; His oxygen numbers were normal this morning, but still a bit of a fever. He said he felt better, would go to work, get tested, and go from there. (For reference, he is double vaxxed, waiting on a booster.)
He came home early and yep, positive for COVID. He is basically fine...but still body aches and stuff. Now, I need a test, right?
We are supposed to acquire free rapid antigen tests from grocery stores and the province. Stock is all out.
The local testing center allowed immunocompromised people, but only if they are symptomatic. I have no symptoms, or at least I don't think I do. But isn't it correct that immunocompromised people don't show the strong symptoms like others?
My local neph clinic is useless and my tx center is far away. In all honesty, I feel a little sluggish, but fine. I am not sure how I am supposed to feel, you know?
Not sure what are even the odds that I have COVID... I'll keep harassing people on the phone then.
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Dear Ukrainian Tracksuit, I am so sorry for your husband and please ask your GP-doctor and your transplant-center straight away what you should do right away, apart from looking after your husband. Please find out a.s.a.p. and please, since you already have had your kidney-transplant, please don't even wait until "any or some symptoms show"... Good luck!!!
Thinking of you both and best wishes from Kristina. :grouphug;
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Omg what a situation that is. Is it maybe poss to get a test through your hubby’s work?
Good luck my friend, and well wishes to your husband.
Love, Cas
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That sucks. Our area was in the same test shortage situation around Christmas. The tests kept showing up at odd hours for shipping from our various online retailers like Walmart, CVS and Walgreens. People that really needed tests quickly ended up going to the pharmacies that provided higher cost rapid tests that insurance would not pay for, think travel tests and the like.
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I managed to get a test at the public health-run center - I just rambled off symptoms that I do not particularly have. :P Now up to 48 hours of waiting. Thing is, if you are in a high risk group, based on that alone, no test. Be high risk with symptoms, come on in. :P
Husband who should stay locked in a room is up and about but seems to be developing chest congestion. He called GP and hopefully they will call back. Thing is, I don't know what a GP can call in for a prescription?! Oxygen where it was before.
I just knew that he would bring this damn virus home at some point. Since omicron, I kept nagging that he had to upgrade his mask (wear N95 which are readily available and plentiful now, but no, didn't listen) and I said even if he looked nerdy, wear the goggles or shield that were handed out too. Oh no, he would look nerdy and he "couldn't really see his work" with the visor. Kinda resentful right now. :P
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I'd be furious, UT! Nerds are cool these days. Didn't your husband get the memo? LOL!
For your husband, your GP could call in a script for Paxlovid or Molnupiravir, the two new anti-virals. Paxlovid has proven to be the most effective of the two, however, it is contraindicated in a lot of other commonly prescribed drugs. I don't know if these two anti-virals are available in your neck of the woods, though, but that's what would be prescribed in the US. He'd need to start it soon, though.
You best make a plan should YOU become ill. You probably can't take Paxlovid...contraindicated in tacrolimus. Can you get monoclonal antibodies locally? Like, sotrovimab?
Keep us updated!
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My test came back negative BUT I am sick. Nothing major at this point.
Body aches, chills, sore throat, headache, scattered brain, slight nausea. But, blood pressure normal and oxygen good.
I had a chronic body ache right over my pancreas last night so I got panicky. Blood sugar was in perfect range though.
My husband’s employer sent over a box of 5 rapid antigen tests and industrial strength disinfectant. If I feel worse, I’ll use one and then get another PCR.
His GP prescribed nothing. Just told him to go to the hospital if he can’t breathe or has chest pain.
Monoclonal antibodies are available at the local hospital. It seems like a labyrinth to get them.
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Dear Ukrainian Tracksuit, I am very sorry and I am thinking of you. Kind regards and good luck-wishes from Kristina. :grouphug;
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Sorry to hear your husband has Covid. I wish him a speedy recovery. And please, please take good care of yourself. Keep the indoors ventilated and get some fresh air. I know it's winter but seriously, fresh air is important. If it's too cold to keep a window open or to use the air conditioner, try to use fans to keep the air circulating.
Take care,
Debra aka PrimeTimer
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I don't really know what to do, guys.
When I had my COVID test the other day, I had a slight fever, body aches, and chills. All of that has passed and I was negative for COVID.
Now, I have a cough (barking) that hits me most when I lay down (hence not sleeping now :P) and a runny nose. Other than that, all my stats are fine (O2, bp, pulse, glucose). From time to time, a small blob of mucous will dislodge
I planned on grabbing a bottle of cough syrup in the morning (Robitussin is okay to take for tx patients) but wondering if I should ring my own GP on Monday. I guess my concern is if this sits in my chest, I don't really want pneumonia. Usually their advice is just to head to the ER...who in turn treat people like crap for wasting their time. :P But, all my stats are fine, and that's how they consider whether one should be there or not...
Husband is basically 95% better. :waiting;
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Do you have one of those at-home tests, and if so, could you test yourself again? I wouldn't trust a negative test result taken a few days ago if 1. my husband had covid, and 2. I am having covid-like symptoms. Sure, it may be just a cold, but if you're a double solid organ transplant recipient, the stakes are hgher.
Let us know what happens!
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Yes, so, I did a rapid antigen test, and it came back positive.
Immediately after booked a PCR (the official test needed to get help …) and had it done. Now I wait…
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Please do also involve your GP and find out his/her opinion where to go from here to make sure and I keep my fingers crossed for you both !!! :grouphug;
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2nd PCR came back positive.
Today is a holiday (Family Day ::)) so doctor offices and the like are shut. Will be interesting IF public health rings me today or tomorrow... need a referral from a doc to get any care and if they are out of office, well..the waiting game.
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Oh, jeez, UT. How are you feeling? I REALLY want to know what your doc will say. Just don't let them give you Paxlovid.
Gosh, I'm concerned about you. Please do let us know how you get on.
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Hey MooseMom, I feel sick (like head cold with nausea and dizziness), but all my vitals are fine.
Yesterday was a holiday so my doctor rang in the evening when they noticed the result had been sent to them. Called in an asthma puffer for me to use for the congestion. That's it. Sent a referral to the doctor handling the covid patients and that's it. They would highlight it that it should be looked at first (because of being an organ transplant dork) but "they are really busy" so it may be a couple days for them to contact me. Probably be fine by then.
Public health people called. Told me to be happy it is omicron and not delta because the delta was much, much worse. And told me to isolate for 10 days.
That's it.
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I'm quite shocked, UT. That's it? Gosh, when it comes to treating Covid, time is of the essence. I, well, I just don't know what to say. This seems awfully dismissive.
I'll be on the lookout for updates from you should you feel like positng. I remain concerned.
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Hey MooseMom, I feel sick (like head cold with nausea and dizziness), but all my vitals are fine.
Yesterday was a holiday so my doctor rang in the evening when they noticed the result had been sent to them. Called in an asthma puffer for me to use for the congestion. That's it. Sent a referral to the doctor handling the covid patients and that's it. They would highlight it that it should be looked at first (because of being an organ transplant dork) but "they are really busy" so it may be a couple days for them to contact me. Probably be fine by then.
Public health people called. Told me to be happy it is omicron and not delta because the delta was much, much worse. And told me to isolate for 10 days.
That's it.
Dear UkrainianTracksuit, I do hope these ten days of isolation will bring you good health-results and hopefully you and your husband are feeling better soon as well.
I send you both my kind regards from Kristina. :grouphug;
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My husband is going back to work tomorrow. He'll get tested when he gets there and that's that for him. Back to normal.
And yep, MooseMom, time is of the essence so that's why I am a little peeved off right now.
That morning fax to the covid doctor that was supposed to happen in the morning? Well, just found out it happened late afternoon. Pretty much end of business day. Nice little disclaimer that by the time my case is considered I will time out of the window for monoclonal antibodies.
The good news is that at least (for me! as I know other people have died and ended up in hospital with omicron) omicron is mild and the 3 jabs of Pfizer did their job. I'll be fine at the end of this...like I am not in any mortal danger, just misery and discomfort for now.
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Husband hasn't returned home so that means his test was fine at work. :cheer:
As for me, it's up to my body on its own to fight this one! Knowing that it took 2.5 weeks for me to fight off a cold, this should be interesting.
Just heard from the covid people at the local hospital and someone will touch base with me "in the next couple days" so that's no antibody treatment for me. Like what is this? Every answer I get is "in a couple days" and then "in a couple days."
Just now, my file is being forwarded to the doctor in charge. Talk about freakin' bureaucratic and administrative pyramid. Being a SOT recipient "qualifies" for treatment, but it does not put an asterisk beside you in the triage system. Like it does not put a fire under anyone's behind. Like I could understand the chemotherapy people, bone marrow transplant people, and certain groups of unvaxxed people ahead of me...but the entire over 70 year old senior cohort? And a racialized group with just one medical condition?
Personally, I think because the medications are expensive, they ensure people time out of the window on purpose :P and basically use them for inpatients (though meant for outpatients).
And the nice "I hope you feel better soon!" at the end is so comforting. ::) Sorry, but at this point, I don't need to hear back from them in 2 days because they can't do a thing for me. Avoid stupid calls and doctor time to save money in that way.
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Well, color me horrified, UT. Just to make sure I understand correctly, are you taking a mycophenolate, and if so, are you certain that three jabs of Pfizer have "done their job"? Your immunosuppressants haven't impaired the intended effects of the vaccine?
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Yes, I take mycophenolic acid (Myfortic).
Basically, I have no way to know that the 3 Pfizer jabs did their thing. No one did any antibody testing and it wasn't available (at least for me). I'm going off the notion I have some protection because the booster affected me strongly. Again, assumption.
My GP said that all their patients on immunosuppressants that had 3 doses of vaccine "did well." There is a difference though between some classes of immunosuppressants and mycophenolate in regard to vaccines...but I am just an idiot without a medical degree. What do I know? ::)
Small-town bottom of the barrel doctors with huge egos at an inefficient hospital. Let's make a viral video about why we need to mask and brag we have "the good stuff" for high risk people in stock when they basically can't tell the difference between a butthole and a nostril. I'm over it at this point. :P
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Well, YEAH, there is a vast difference between your run of the mill immunosuppressants and mycophenolate and belatacept, both of which have been proven to be the real villains of the piece. You don't have to have a medical degree to know this.
I don't blame you for being "over it", but, well, just look after yourself, which is a really inadequate thing for me to say under the circumstances. Keep us up to date on how you are feeling, OK?
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Sorry UkrainianTracksuit. There have been a few people who developed COVID on the Transplant Vaccine Facebook group, some bad, and others very mild - if you want to dig out those stories I can find a link to the group.
Unfortunately I feel the zero response unless you develop serious symptoms is fairly standard especially when omicron is raging. My mother in law who is ~82 developed omicron after emergency dental work right after Christmas. Her doctors didn't have treatments for her or any advice other than to rest etc. Within in the week she was able to see a doctor but that was only for pain she developed after chipping ice...
And also I'm sorry you have to go through this as Ukraine is attacked.
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I understand that services can be slowed due to omicron, but not to sound like an asshole (oh who cares, I am an asshole, so I'll let it rip), this hospital has under 10 patients hospitalized with no one in ICU. They are just slow and stupid.
At this point, not to sound melodramatic, I do not even feel like living anymore. I feel weak from sickness and I am heartbroken from this war. Crying for the Ukrainian citizens and so worried for soldiers (Ukrainian and Russian). What a relief my husband retired from the military when he did!
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At this point, not to sound melodramatic, I do not even feel like living anymore. I feel weak from sickness and I am heartbroken from this war. Crying for the Ukrainian citizens and so worried for soldiers (Ukrainian and Russian). What a relief my husband retired from the military when he did!
I agree with you, it is absolutely devastating to witness cousins fighting against their cousins... for what ...?
At the same time it is very sad for many of these poor soldiers, who so often have joined the army hoping for a "career-option" and only realize later the absolute horror they have "got themselves into"... Thinking of you and hoping that this horrific nightmare stops soon ... :grouphug;
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Public health people called. Told me to be happy it is omicron and not delta because the delta was much, much worse. And told me to isolate for 10 days.
That's it.
UT: Yikes! Sorry to hear about the positive test result. No doubt this is a scary thing. Especially for a double transplant recipient. But you've come so far that you've got to tell yourself to keep going. Try to put your mind on other things (happy things) that are in your future and use it as a distraction from your present situation. That is what I do when things get rough. It helps to keep me going. We are all different, but I hope you will find your own little "comfort zone" and draw some strength and hope from that. Please keep posting to let us know how you (and hubby) are doing.
Take care,
Debra aka PT
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Aww thanks Pea Tea. You are the queen of pushing through bad things so your advice is appreciated.
Yesterday, basically near the end of the window for treatment, I got a call from one of the covid doctors. They arranged for a monoclonal antibody treatment that evening. As well, they lowered my immunosuppression to 180 mg Myfortic twice a day (down from 360 mg twice a day) for 4 weeks.
I agree with you, it is absolutely devastating to witness cousins fighting against their cousins... for what ...?
At the same time it is very sad for many of these poor soldiers, who so often have joined the army hoping for a "career-option" and only realize later the absolute horror they have "got themselves into"... Thinking of you and hoping that this horrific nightmare stops soon ... :grouphug;
Truly, this is not how a brother treats a brother. I have no words at this point. Friends that I know have to be okay are not updating how they are...
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Truly, this is not how a brother treats a brother. I have no words at this point. Friends that I know have to be okay are not updating how they are...
I came to the conclusion long ago that we are in God's insane asylum here on earth. I'm praying for a quick resolution to this madness, but barring that I wouldn't be surprised if this turns out to be Russia's Afghanistan on steroids. Fear can turn into anger very quickly, if it hasn't already.
Being a bit of a nerd, I will say putin reminds me of gollum/smeagol in Lord of the Rings, he wants his precious Ukraine. The thought came to me when I realized he looks a bit like him.
(https://www.dialysisethics2.org//open_images/misc/smeagol2.png)
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Truly, this is not how a brother treats a brother. I have no words at this point. Friends that I know have to be okay are not updating how they are...
I came to the conclusion long ago that we are in God's insane asylum here on earth. I'm praying for a quick resolution to this madness, but barring that I wouldn't be surprised if this turns out to be Russia's Afghanistan on steroids. Fear can turn into anger very quickly, if it hasn't already.
Being a bit of a nerd, I will say putin reminds me of gollum/smeagol in Lord of the Rings, he wants his precious Ukraine. The thought came to me when I realized he looks a bit like him.
... Personally I don't really believe that Putin is the actual decision-maker in all this ... wouldn't you agree?
P.S. Did you mean Gollum or Golem?
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Sorry I cannot really contribute some well-connected thoughts on this as I am still dealing with this COVID...
But, this is all on Putin and his inner circle. The ones that came up with the denazification and 'special operation' terminology. Also, the same people that completely misjudged the entire operation that was supposed to be over so quickly. None of these people have a modern view of politics. You do not bring a country closer by invasion...you completely push it away and turn your own state into a pariah.
This is a mission impossible as Ukrainian people will fight and they will never allow any sort of puppet government. Sadly, this will be bloody and painful. Ukrainian people are brave. We are fraternal nations and this is shameful.
My heart is broken for Russian military families who mean nothing to the leadership. It seems that they have used conscripts for this...which is appalling. Western news and newspapers should not come across so giddy to photograph dead Russian soldiers.
Please support Ukraine in ways that you can.
Promise me one thing --- do not blame average Russian people. I have seen this and sadly I have experienced this yesterday. See Russian people protest (get arrested), share anti-war sentiment, doctors sign an anti-war letter...but the government has not a care in the world for the people.
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Promise me one thing --- do not blame average Russian people. I have seen this and sadly I have experienced this yesterday. See Russian people protest (get arrested), share anti-war sentiment, doctors sign an anti-war letter...but the government has not a care in the world for the people.
Thank you for that reminder! I greatly admire the Russians protesting in the face of putin's crackdown, it takes an extreme amount of courage and reminds us there are a lot of good people there. I also believe many of the Russian soldiers don't want to be there - not what they signed up for.
Some time ago I did read a little about how Russia got to where it is today. To me it looks like how hitler came to power, only more subtle. Today we don't blame the Germans for hitler's rise, more the circumstances they were put under.
P.S. Kristina, on rottentomatoes I see it spelled gollum - there might be more than one way to spell it for all I know?
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Well, I can say, people are becoming pretty damn hostile and rude. No one even asks 'how do you feel about Ukraine?' they automatically think you are a 'bad person.' My feelings mean NOTHING right now because there are civilians being killed, children in bunkers, and general awfulness..but I want to cry. I feel so...uninvited?! to live here.
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Well, I can say, people are becoming pretty damn hostile and rude. No one even asks 'how do you feel about Ukraine?' they automatically think you are a 'bad person.' My feelings mean NOTHING right now because there are civilians being killed, children in bunkers, and general awfulness..but I want to cry. I feel so...uninvited?! to live here.
Dear UkrainianTracksuit, I don't think that people become hostile and rude, I think they rather feel totally overwhelmed and very helpless about the whole situation, and knowing that you are Russian they don't want to say something that could sound stupid or silly ... because, what we see in the news is horrific beyond comprehension and to see people suffer like that is almost unbelievable, especially when last month or the weeks before that we could not even imagine a war between Russia and the Ukraine, where a brother fights against a brother... and please don't feel uninvited, I am sure it is not personal when people don't know what to say to you right now because the enormity of what's happening is so hard to comprehend, that everything anyone (myself included) could possibly say would surely just sound inadequate ...
Please take great care, I am thinking of you and I honestly feel desperately sorry about all this horror that's happening right now... :grouphug;
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Sorry I cannot really contribute some well-connected thoughts on this as I am still dealing with this COVID...
Please support Ukraine in ways that you can.
Promise me one thing --- do not blame average Russian people. I have seen this and sadly I have experienced this yesterday. See Russian people protest (get arrested), share anti-war sentiment, doctors sign an anti-war letter...but the government has not a care in the world for the people.
UT, I apologize for being late with this, but I am praying for the Ukrainians and for your family and friends. I can't imagine being ill with something like Covid and then war breaks out in your homeland. I also pray for the civilian Russians. People often fail to realize that because of Putin, they too are caught in the middle of this. I hope for this to be over quickly and in a way palatable for the citizens of these countries. Obviously, it will be hard but please try to rest so that you will get better. I had a fever weeks back (not Covid) and it really set me back physically for a couple of weeks. That was nothing compared to what you are trying to get over. Please take good care of yourself. Hopefully your hubby is strong enough to handle the errands and housework. Let him take care of you now.
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Well, I can say, people are becoming pretty damn hostile and rude. No one even asks 'how do you feel about Ukraine?' they automatically think you are a 'bad person.' My feelings mean NOTHING right now because there are civilians being killed, children in bunkers, and general awfulness..but I want to cry. I feel so...uninvited?! to live here.
Sorry. In my bubble even the conservatives worry for Ukraine and place the blame on Putin over the Russian people or the young people fighting the invasion.
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I have to have a chest x-ray and have blood work to check my organ function due to the lowered immunosuppression. Don't have the energy for that but I'll get both done tomorrow morning.
It is nice to know some people out there see the real culprit.
My neighbor, who I know doesn't know much about Russia at all (only what is on the news which is never good) but VEHEMENTLY hates Donald Trump (as in engages in online fights with strangers over him...after all this time) consequently hates Putin because Trump admired him. Today, she "advised me" that I am partly to blame for the missiles that landed in Ukraine because my "tax dollars paid for them." No one has the energy to deal with that level of stupid.
My husband has to work from home now. ::) No one wants to work alongside a retired military guy that got his first civilian job at a sanctioned company. Like the myriad of other workers, he was a cog in the machine. ::) His recreational hockey club is collecting money to fund the volunteer fighters in Ukraine and my husband said he could not donate on principle. So naturally, he's evil. Does he feel awful for Ukraine? Yes. Does he think this is a grand strategy nightmare? Yes. He is livid to hear reports of "tricked" conscripts...but he will not donate. They could have collected for the Red Cross but I guess that wasn't manly enough.
In the meantime, my accounts over there are in a sanctioned bank (which basic consumers use too, not oligarchs) and the money in them is basically worthless now. Yes, I know, this is NOTHING compared to people dying and the horrors going on. I acknowledge that a hard stance has to be done to confront that creep..but damn.
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I have to have a chest x-ray and have blood work to check my organ function due to the lowered immunosuppression. Don't have the energy for that but I'll get both done tomorrow morning.
Is this symptom based or preventive? I'm glad they are looking into something COVID related for you.
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It is symptoms-based because I have congestion that I cannot bring up even after the monoclonal antibodies. Lowered immunosuppression is supposed to allow my body to take care of the lingering COVID but it seems to be struggling. Hopefully my renal function hasn't been affected...no testing on the pancreas because that's my out of town team.
And yep, people have lost their minds against Russians..
https://www.cbc.ca/sports/hockey/nhl/nhl-player-agent-says-russian-clients-facing-disturbing-levels-of-harassment-1.6369357
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And yep, people have lost their minds against Russians..
Did I mention we are in God's insane asylum? I did see one U.S. general mention the fact that the Russians running out of food and fuel could be on purpose. I see Angels on both sides.
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Hi guys,
Just a short update.
I’ve got long COVID but it is bearable. It is like a chronic cold and shortness of breath. That is not what I am here to share though.
I learned an interesting tidbit of information from my transplant team. Take it for what it’s worth.
I was due for my 4th booster, but I have to wait an additional 90 days because I had monoclonal antibodies. I am going to be kept on decreased immunosuppressives (180 mg Myfortic twice a day) in this period to give the booster its best effects.
(As for the private messages from people, I’m not ignoring you, I just need to be in a better headspace before I reply.)
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Oh, no! Long Covid? I'm sorry to hear about that. There is a push here in the US to have long Covid recognized as a "thing" because too many doctors don't want to understand/deal with it. Did you get an actual diagnosis? If so, good for you.
With with mAB were you treated?
I've heard from several people who have said that their mycophenolate dosage has been temporarily decreased to give the booster a "better chance" to work.
Has anyone in your transplant team talked to you about getting Evusheld when the time is right?
Thank you for the update and for the extra info. I hope you get better very soon and that the effects of long covid are bearable. Take good care of yourself.
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Hi guys,
Just a short update.
I’ve got long COVID but it is bearable. It is like a chronic cold and shortness of breath. That is not what I am here to share though.
I learned an interesting tidbit of information from my transplant team. Take it for what it’s worth.
I was due for my 4th booster, but I have to wait an additional 90 days because I had monoclonal antibodies. I am going to be kept on decreased immunosuppressives (180 mg Myfortic twice a day) in this period to give the booster its best effects.
(As for the private messages from people, I’m not ignoring you, I just need to be in a better headspace before I reply.)
Dear Ukrainian Tracksuit,
Many thanks for taking the time to update us, it is very much appreciated, also the details, about the long Covid, like your feeling of suffering from a chronic cold with shortness of breath ... and I very much hope, that you recover well and hopefully you are going to feel much better soon.
I have not heard anything about this long Covid yet and thank you very much for the information. I also appreciate, that you took the time to update us during this very difficult time we are all experiencing right now.
Since my Covid-booster-vaccination (my third vaccination) last year, I seem to suffer from chronic “sniffles”, needing lots of tissues etc. every day and adding to this, I also have a rough voice with occasional coughs and swallowing-difficulties. But my Covid-test turned out to be negative and when my throat and stomach-problems were medically examined through an Endoscopy, it showed an inflammation, which is getting a bit better and hopefully recovering soon (touch wood) ...
Here in London no-one needs to wear a face-mask any longer, not even in shops, but I still adhere to wearing my face-mask at all times and I also make sure to take all the other precautions, because I have noticed, that since the transplant my immune-system seems to have been left extremely vulnerable and compromised, which makes me feel, that I certainly need to take the greatest medical care at all times…
Because of my chronic difficulties with swallowing, runny nose (sniffles), coughs and rough voice since my third anti-Covid-vaccination, I still keep as isolated as is possible and I also feel the need to consult with a doctor/specialist to discuss, what can be medically done about all the symptoms I have been experiencing since my last vaccination and decide then with the doctors how to go about my 4th vaccination …
I also want you to know, that from what I read and see about what is happening in Russia and the Ukraine, I feel totally speechless, helpless and very sorry and can well imagine your total distress and sadness and hopefully this terrible nightmare is going to stop soon… and I am sending my kind thoughts and best wishes to you and your husband from Kristina. :grouphug;
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Hi MooseMom,
Getting the diagnosis was kinda funny. The transplant infectious disease doctor doesn’t believe in long COVID. However, the transplant clinicians believe it occurs, because some of their patients that have been been weeks out of isolation are still symptomatic. They believe it should be resolved in a matter of months. They weren’t surprised to say the least.
I was treated with Sotrovimab.
As for the Evusheld, not a peep about it. It was approved in Canada only on 23 February 2022 at 100.000 doses. It should have arrived in the country a week ago and then it will be divided up across the country. Since I live in a low population density area, I doubt our health system will get any doses. As well, according to the Canadian Society of Transplantation, I don’t fall into a high risk category, so I doubt I’ll get it.
https://www.cst-transplant.ca/_Library/Coronavirus/CST_statement_on_the_use_of_Monoclonal_Antibodies_against_COVID-19_v_1_2022.pdf
Hi kristina,
I am very sorry to hear that you are still feeling unwell from your booster. That is truly something odd to happen!
Our mask mandates have been lifted here as well, but surprisingly, I see more people with masks on than off. Still, I mask and social distance as usual. I am concerned about re-entering the workplace at some point though and even if there are vaccine mandates for many offices.
I hope that you receive a consultation over your 4th shot soon. Your concerns need to be addressed and you do need whatever protection you can get being immunocompromised.
And yes, I feel totally defeated and heartbroken for the ongoing situation. I’ve barely got the energy to say more because I am just sad….
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UT, if you are a SOTR of any sort and particularly if you take mycophenolate, then you are by definition in a high risk category. Please do note that the CST statement says. "Below are SOME considerations..."
I suspect that the main obstacle for you getting Evusheld is your locatoin since you are fairly far away from your transplant clinic, right? I am not shocked you've not heard about it because I was the one who told my own GP and tx clinic about it the very day it got its EUA by the FDA.
Since you have covid/long covid, you are not eligible at this time to receive Evusheld, so it is a moot point. But if you think you may be interested at a later time should you ever suspect that the immunity you've received from an original covid infection is starting to wane, it might be an idea to contact your transplant clinic for some guidance. Truthfully, though, my own clinic was next to useless although I did eventually get Evusheld there.
In the NE of the US, many places have withdrawn sotrovimab because it is not effective against Omicron BA.2, which is now the dominant strain in that part of the country. As it spreads, I don't know what we're going to do should we become ill. Paxlovid is baaaaad for us, but there is a new mAB bebtelovimab that seems to work better...if you can find it.
I wish you the best of luck. I do know one person with long covid. He told me he just never seemed to get his energy back. I haven't seen him in a month or so, so I'm not sure if he has fully recovered yet or not. Please continue to keep us up to date on your progress. Take care.
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Hey again MooseMom,
Yeah, totally, on the wider guidelines, I know I am eligible for Evusheld, but in regard to the strict rationing of the doses, they will pass me over. I hope that the 100k is just to "start with" and more will come along the way. 100K doses could easily be sucked up by transplant patients, those on chemo, or unable to receive the vaccine in Toronto, Montreal, Vancouver, Calgary, Edmonton and the East coast capitals in a day at like give or take 12.500 people in each city if distributed equally. It does not seem like much. I really, really, really hope this government squeaks more in over time.
Yes, I believe that my transplant center is my best bet (larger city and a research hospital) for the Evusheld though far away. Funny thing is that I read some gossip on a patient forum that someone emailed the tx hospital about Evusheld and got no reply. One thing that MIGHT help is that our local doctor in charge of the covid programming is a young hot shot that likes making a name for himself :P and he knows how things are done at other larger hospitals so maybe he'll be lobbying for some supply to be directed here. Obviously I wouldn't get any at this time...
As for Omicron BA.2, I am little shaking in my boots. It has not been officially confirmed, but with rising case counts and hospitalizations, we will surely enter our 6th wave. Our dinky city has had days of 120+ new cases recently and those are just the ones eligible for PCR tests. This will be our first wave without any precautions set in place. One doctor said, "What feels like a really mild case can be doing massive internal damage to your body." See here: https://www.ctvnews.ca/video?clipId=2413234&playlistId=1.5842137&binId=1.810401&playlistPageNum=1&binPageNum=1
I completely second the feeling of never getting energy back. Your poor friend.
(Edited to add this comment I read re: distribution of Evusheld in Canada: When speak to the doctors I found out that the medication would be shared amongst the provinces and then they would have to either pick who gets the medication OR do a lottery and see who gets it. )
Yay, a lottery for protection. I'd be better off being a hooker for mercenaries if my life came down to a lottery and I needed to get lucky for protection.
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Two nehprologists revised Evushield "if I can get it elswhere". One does not have access to any; the other is subject to his hospital's rationing policy and I don't qualify and am not important enough for an exception.
I would really like to know if my hospital's rationing program uses any woke criteria.
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Two nehprologists revised Evushield "if I can get it elswhere". One does not have access to any; the other is subject to his hospital's rationing policy and I don't qualify and am not important enough for an exception.
I would really like to know if my hospital's rationing program uses any woke criteria.
Who says you don't qualify? Why exactly do you not qualify? Have you used any of the Evusheld (and other mABs) locators to find a provider outside of your hospital? Have you tried looking at your state's Outpatient Therapeutic Locators?
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UT, when I got my dose of Evusheld, I was literally told that I'd won the lottery. Ugh.
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Who says you don't qualify? Why exactly do you not qualify? Have you used any of the Evusheld (and other mABs) locators to find a provider outside of your hospital? Have you tried looking at your state's Outpatient Therapeutic Locators?
1. The NP as the transplant clinic at a major Boston hospital
2. I was told I was not one of their "highest risk patients"
3. Not aware of those; will look for one.
I checked on locator - my hospital is listed, which is consistent with the NP telling me "we are only allowing that for our highest risk patients".
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Well, my husband has COVID again and this time it is BAD.
Well, not intubation bad, but he can't get out of bed.
He had a headache and a runny nose. Rapid antigen test showed negative so he went for a PCR. PCR was positive.
He has been triple vaxxed. He is a generally-healthy athletic guy and it has thus far knocked him on his behind. He said this is the sickest he has ever been in his life.
We have a refugee family staying with us so I have been masked at home just because they don't believe in COVID type of thing and they think I am nuts. But, I don't know who they encounter during the day, so I mask up. I hope this has protected me against my husband...but now I have to worry about this family catching it too.
We are still waiting to hear about my husband getting Paxlovid.
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Jeeeez UT, what a horrible thing to read again. Good on you for wearing your mask all the time. Here’s hoping you stay well, and that the family believes hard enough that Covid doesn’t exist. I hope as well that your husband recovers soon.
Love, Cas
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Dear Ukrainian Tracksuit, I am very sorry for your husband and it must be frightening for you to think about how to go from here, especially since your husband and you are so close and thankfully you are wearing your facemask at all times. I don't know what to say and just hope your husband recovers quickly and you remain as well as is possible. I wish you both the best of luck from Kristina and please take great care. :grouphug;
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I'm sorry. I surely hope you stay healthy and your husband bounces back soon. Thinking of you!
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Not relevant in your husband's case but interesting trivia - Paxlovid is absolutely contraindicated for patients who take Tacro.
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Thanks to those for their kind thoughts.
He was admitted to hospital this afternoon. Since he got sick, he said he felt like his head wanted to explode, but then his temperature spiked to 40.7 C/105.3 F. He hadn't been taking in adequate fluids so I coaxed him to at least hit up the ER for some fluids. His oxygen levels weren't impacted so that's the main thing. I'm sure he'll be fine and as an inpatient they'll start the antivirals. That's not to say I am not worried. Like..just because... and he's alone.
So, this Cimzia medication he takes also causes a weak antibody response to the vaccine. But, you can't talk to wall about being careful. He's been eating at restaurants (not wearing a mask) and went to a bachelor party (...obviously no masks there..).
So far, I continue to feel fine. Our guests seem fine too. Fingers crossed for them.
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Good grief, UT, I am so sorry to hear all of this is happening. I certainly don't like the fact that your husband has had to be admitted to hospital, but at least they will be well equipped to take care of him. I know you doin't like the idea of him being alone, but I DO like the idea that you are isolated from him. There is nothing you can do for him while he is in hospital, and you need to keep yourself safe so that you will be able to look after him once he returns home.
I knew he had been taking medication but didn't realize it impacted the antibody response.
How kind of you to be offering shelter for a refugee family, but I can't help but think it is ungrateful for them to ignore your situation and do nothing to keep you safe. They need to do better.
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Dear Ukrainian Tracksuit, I am so sorry what you both continue to go through and I do hope your husband recovers very soon. How are you both doing today? Is your husband getting better? I send you both my best wishes and hopefully you stay as well as is possible and I also send my get-well-soon-wishes to your husband from Kristina. :grouphug;
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How kind of you to be offering shelter for a refugee family, but I can't help but think it is ungrateful for them to ignore your situation and do nothing to keep you safe. They need to do better.
Agreed. Ukraine had the lowest vaccination rate in Europe and experienced a high death rate. They never took Covid seriously. They didn't want to wear masks and thought social distancing was silly. But hey, centuries of natural remedies will help... ::) Every conversation begins with "Listen, I know that you're going through a really difficult time, but if you would just..." So now they have taken that mindset here. Mother probably tells her kids that I am an orc or a moskal. ::)
My husband is still in the hospital. He is not intubated but he is sick. It's the inflammation that gets you I guess. Tests tomorrow will give a better idea.
This morning I got bad legal news from overseas too. Sitting having my coffee and then bam...find out.
I have so much anxiety I feel like my heart is going to stop and I am so so so nauseated. Yet I have to keep it together and come across as a functioning human being. It was a struggle keeping my tac and MMF down and not a pile of barf.
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O UT. :cuddle;
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Sorry UkrainianTracksuit.
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I have so much anxiety I feel like my heart is going to stop and I am so so so nauseated. Yet I have to keep it together and come across as a functioning human being. It was a struggle keeping my tac and MMF down and not a pile of barf.
Dear Ukrainian Tracksuit, I am so sorry that your situation has not changed yet for the better and that you still have to "put up" with the anxiety about it all. I do hope that "things" are getting better for you both when your husband is out of hospital and back home again and hopefully these Covid-fears are calming down for all of us soon. I shall keep my fingers crossed for you both and send you my kind regards from Kristina. :grouphug;
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Oh, UT, gosh. I'm sorry your world just got more hostile. I'm horrified that your husband is still in hospital. Have you had more news about his condition yet?
Bad news from overseas? That doesn't sound good. No wonder your anxiety is reflected in your rapid heartbeat and stomach aches. All of that PLUS unmasked refugees in your home adds up to a LOT of anxiety. I am so sorry.
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I hope you get some good news soon. The world is awash in trauma. Even a small amount of good news in one person's life can help us all.
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Thanks for the kind words all.
My husband has myocarditis/pericarditis and an AKI. He has a chronic inflammatory condition so the Covid inflammation just went to party. He's basically in there at this point now for them to administer medication for the heart inflammation. I guess to wheel him off for echocardiograms too. It is a bit of an "ugh" situation because they have to treat the heart inflammation with the AKI in mind. His kidney function isn't close to needing short term dialysis so that's a big win. I'm not too concerned about the AKI tbh because I experienced two of those instances with deranged kidneys and they bounced back. (Well, if you consider 5% bounce back at Stage 3 good. :P)
He is well enough to complain that he wants to go home. He should be home soon enough. His latest PCR is negative so I can visit. Going to pop in tonight to listen to him complain and probably ask for a sponge bath.
As for the bad news, that is making me quite ill still. I am living on ZzzQuil and coffee.
I actually had a good day with our refugee family today. Took the mama and the kids on a nature walk. Finding them housing is still a huge issue though. Everything is so expensive. This world, I tell you...
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Oh man, that's a lot of -itises there, UT. I'm glad to hear that going home is a reasonable goal, now. Will having him home make your bad news from overseas easier to cope with?
Good to hear about your refugee family! I hope the nature walk was soothing for you. Gosh, you DO have an awful lot on your plate.
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Dear Ukrainian Tracksuit,
I am very sorry for what you both are going through and I do hope, that your husband's health-scare-nightmare is amicably over soon with the right medication working hopefully well for him and I keep my fingers crossed for you both.
... It is very sweet of you to look after the refugee-family, this is very humanitarian and so thoughtful of you and I am sure they are ever so grateful ... and ... I would not like to know details of the horrors they must have left behind ... because ... my mother's family had to leave Zhytomyr/Kiev during the winter in 1917 just in time to save their life and I don't think they ever had a real chance to recover from these horrors ... this world, I can only agree with you ...
Please stay as well as is possible and please take great care and I send you my best wishes from Kristina. :grouphug;
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MM, nope once my husband gets home, he cannot really help me at all. He is going to have to rest for 2 months because of the heart inflammation and besides, it's all on me to sort! Ugh.
He'll have to see our local neph team now too. So I kind of just can't help but laugh. Like he told a nurse, "Don't explain. I know everything about kidneys." Luckily for him, he should be able to hop off the kidney train in the near future. I wouldn't doubt dehydration to the point of pee almost like Texas tea didn't help him either. ::)
The anxiety hits me so hard and it comes in waves. Yesterday I managed to push it to the side with the activity with the family and visiting my husband but it hit me as I lay in bed. I'm doing what I have to do but damn, it is so destabilizing.
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Oh no, I hope he is not an undue burden once he returns home. Husbands can be so needy.
Yes, keeping busy during the day can help stave off waves of anxiety, but then exhaustion sets in. It's impossible to be "busy enough" all day long. With dark nights can come dark thoughts. It can become a vicious circle. I hope posting to IHD can help a bit. :cuddle;
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My husband has been home for a handful of days now. That's good.
However, he developed a sinus infection from all the inflammation and gunk coming out of his nose from the COVID. Pain was intense. This was Sunday. Went to walk in clinic yesterday morning, told him to take a bunch of Sudafed and crap (even with AKI) and he's on the road to recovery.
He sees the same neph I do next week. I am just laughing at it. Neph monitoring for a little bit.
Life remains a dumpster fire.
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I’m glad to hear he is out of the hospital. I wish you the best.