My husband has COVID and I can't get a test..yay!

[kristina]

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 ... 

[PrimeTimer]

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 

[UkrainianTracksuit]

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 ... 

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...

[plugger]

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.

[kristina]

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?

[UkrainianTracksuit]

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.

[plugger]

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?

[UkrainianTracksuit]

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.

[kristina]

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...

[PrimeTimer]

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.

[iolaire]

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.

[UkrainianTracksuit]

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.

[iolaire]

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.

[UkrainianTracksuit]

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

[plugger]

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.

[UkrainianTracksuit]

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.)

[MooseMom]

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.

[kristina]

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.

[UkrainianTracksuit]

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….

[MooseMom]

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.

[UkrainianTracksuit]

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  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.

[Simon Dog]

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.

[MooseMom]

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?

[MooseMom]

UT, when I got my dose of Evusheld, I was literally told that I'd won the lottery.  Ugh.

[Simon Dog]

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".