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Hereware
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« on: August 24, 2021, 02:43:03 AM »

Hello,

Hope all are doing well here. I just need to voice out my thoughts. I have a family member currently undergoing dialysis,  she was diagnosed with breast cancer. I'm bothered of her because of the pandemic that we have. Been watching the news and reports are talking about increase covid cases or different covid variants available.  Due to these, lockdowns and border controls are being implemented. I'm worried that she may not have her scheduled dialysis because of hospital's understaff? I've read that  essential workers continue to face a number of challenges too. They are more likely to report symptoms of anxiety or depressive disorder (42% vs. 30%), starting or increasing substance use (25% vs. 11%), and suicidal thoughts (22% vs. 8%) during this pandemic. Hence, its bothering me if its okay to delay the dialysis.
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kristina
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« Reply #1 on: August 24, 2021, 08:25:34 AM »

Hello Hereware,
Please ask her nephrologist about how to deal best with this emotional and physical shock in the best possible way.
I do hope you both find a good way forward with the help of her nephrologist, whilst continuing with her dialysis-treatments whilst her cancer-treatments are being implemented a.s.a.p. Good luck !!!
Of course, this current Covid-situation makes it very difficult right now to see the light at the end of the tunnel, but please involve and ask her nephrologist together with her cancer-specialist of the best ways of how to combine both her treatments so that she has the least physical and emotional problems whilst undergoing both treatments plus keeping as well as possible at the same time.
When I was still pre-dialysis I also went through such a shocking experience and it is so important for the patient to keep as well as is possible in order to deal with this shock emotionally and physically as well as is possible, whilst continuing with EVERY dialysis-treatment.
I wish you both “nerves of steel” during this difficult time and I also wish you both the very best of luck and please keep as safe as possible, best wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
frugallyzing
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« Reply #2 on: August 26, 2021, 07:49:38 PM »

Talking to people is really important. This situation has affected a lot of us.
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Hereware
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« Reply #3 on: August 29, 2021, 10:14:31 PM »

Hey all! Thanks for your responses. This pandemic has really hit us hard and honestly, things worsen and sometimes seem unbearable because of it. We're talking to her nephrologist about the best way we can handle this..
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frugallyzing
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« Reply #4 on: September 12, 2021, 11:58:56 PM »

How are you? Hope you're okay now.
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Hereware
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« Reply #5 on: September 14, 2021, 08:25:28 AM »

I'm all good. Thanks for checking up on me.
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Hereware
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« Reply #6 on: September 14, 2021, 08:29:43 AM »

Are you guys planning on getting the vaccine soon? Which brand has fewer side effects?
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iolaire
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« Reply #7 on: September 14, 2021, 09:10:29 AM »

Are you guys planning on getting the vaccine soon? Which brand has fewer side effects?
I believe most on the forum were vaccinated long ago.  Right now it feels like the Modena vaccine is a bit superior protection wise to the other two in the us (Pfizer and J&J), but any vaccine is far superior to none.  Some people have a preference to the J&J shot since it requires only 1 shot and thus you will only have potential side effects once.

I'm debating if I want to get a third Pfizer shot, since as a transplant recipient my antibodies levels are positive but low. I have two Pfizer  already and also an additional J&J shot.  I'll do labs on Monday and if my antibodies are still low I'll probably go for the third Pfizer shot on Sunday the 26th.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
kristina
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« Reply #8 on: October 22, 2021, 12:26:13 PM »


Fact vs. fake - why don’t we trust science any more? | DW Documentary

...  A most interesting documentary about Asbestos, climate change, 5G, coronavirus - the public is caught in a battle for the truth. Science is being manipulated and undermined to sway opinion and create doubt. What are the mechanisms behind it all?

Never has scientific knowledge seemed so vast, detailed and widely shared. And yet it appears to be increasingly challenged.

It’s no longer surprising to see private corporations put strategies in place to confuse public debate and paralyze political decision-making. Why did it take decades to classify tobacco as harmful? Why do people still deny human involvement in climate change? Overwhelmed by an excess of information, how can we, as citizens, sort out fact from fiction?

https://www.youtube.com/watch?v=frCIYEyURV0
« Last Edit: October 22, 2021, 12:27:54 PM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Riki
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« Reply #9 on: October 30, 2021, 06:42:57 PM »

I think, when it comes to Covid anyway, I'm pretty lucky.  I'm fully vaccinated, as is about 90% of the population where I live.  I also happen to live in one of the safest places on the planet.  We currently have 2 active cases, and have had a little over 300 cases since the beginning of the pandemic, and no deaths.  Anyone coming into the province is given a rapid test, and if they come back positive, are instructed to get a PCR test done to confirm the results.  Most people are following all Covid procedures (masking, sanitizing hands, etc) and we now have a vax pass QR code to get into restaurants, sporting events, and other non-essential establishments.  Even though there are those in government who think we could be doing more, I think we've done very well here.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
kristina
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« Reply #10 on: November 12, 2021, 11:09:18 AM »

Hello again and ... I was just wondering whether other people and/or patients know or have heard about side-effects from  their last Covid-vaccination? I personally have not been quite myself since my third vaccination (enhanced because of the still undiagnosed chronic pain underneath "my" transplant...) and I have been talking with neighbours and an acquaintance in Wales who feels, like her neighbours, acquaintances and friends very much under the weather since her third vaccination as well.

Some elderly neighbours of hers even feel suicidal because of their living alone plus many side-effects from the Covid-vaccination like total depression, apathy, lethargy, hopelessness etc.

Has anyone else heard about these strange side-effects?

Many thanks again from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #11 on: November 12, 2021, 01:19:47 PM »

Hi, Kristina.  I did not have any side effects from my third shot.  My husband, however, did not feel well after his booster.  He had a nasty headache and stomach ache, although to be honest, the stomach ache I am sure was a result of him having eaten way too much the day of his shot.  He took the next day off, complained a lot, but felt back to normal the following day.

I am sorry to hear you are not feeling yourself after the jab, and I'm sure your underlying pain has made everything feel worse.   :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
UkrainianTracksuit
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« Reply #12 on: November 12, 2021, 05:14:38 PM »

Hey kristina,

I felt pretty sick after my third dose: chills, nausea, fever, body aches, headachey. And well, the sore arm.

It was like this for a few days and then I felt better. My thought was that I finally had a decent immune response to the third dose. But no, nothing lingering, back to basically normal.

Only thing giving me "depression, apathy, lethargy, hopelessness" these days is this early darkness and impending dread of winter!
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UkrainianTracksuit
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« Reply #13 on: November 12, 2021, 05:49:27 PM »

Unrelated to the vaccine question but related to the original intent of this thread....

I think most of you recall earlier in the year when Hopkins study and the lack of IMMUNOGENICITY (made that pretty for you MM!) in transplant patients data started to roll out how we all had a good (and well-deserved) moan. We all questioned what our short term, medium term, and long term prospects looked like. Would we be able to visit family? Live again? Get back to our basic routines?

I admit I had some COVID depression then about the entire thing on the macro scale of it all. But lately, since our rates of local transmission are the highest that they have ever been, now I'm starting to get the anxiety. It's not like the anxiety at the very beginning because I know there is a treatment protocol for transplant patients. It's a different kind of anxiety I think because people have let their guards down in general because of our "fairly" high vaccination rate in the province.

I know that people thought it was all back to normal once capacity limits were lifted (mind you, to those with proof of vaccination). My proof of this is that holiday party invites are popping up in post and electronically! My husband already has the details about his work function - the unvaccinated employees can't come, but it seems like a big enough party/dinner/whatever.

Naturally I said I need to think about it...and he understands. For every other invite, I say that I need to think about it. In all honesty, I don't think I'm going to any of them.

It feels like some state of limbo right now. The world is back to normal (almost) meaning I can fly to practically anywhere worthwhile, but it's just not worth taking the risk unless it has to be taken. Once again, I'm back to wondering about the future (I know...one day at a time). This whole virus will become endemic and we'll continue as usual...but, I just feel as though there has been so much lost time meant for living (especially after my transplant) that I am slowly retreating away from anything good life has to offer! In the grand scheme, it's a drop in the bucket, but for a woman my age...it's the difference between okay face versus "now I need Botox."

And it just blows my mind that there are those in my inner circle that say things like, "protect the vulnerable" pretty much by letting the world do what it wants and vulnerable people stay home all the time, because we have no lives.

I don't know...this turn toward significant "unknown" infections versus close contact infections is just totally messing with my mind lately. Sure, I know, I made no sense here.
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MooseMom
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« Reply #14 on: November 12, 2021, 07:15:25 PM »

I think I'm just sort of fed up with it all, and so I don't feel that much anxiety, anymore, at least about Covid.  Cases are on the upswing in Europe, and I'd wager that we'll see the same in North America sooner rather than later.  I have a "modified" basic routine.  I'd become pretty much of a homebody before Covid, and as I get older, I'm still fine with that.  I have a shedload of novels to read and am actually looking forward to a nice, quiet, snowy winter.  That is easy for me to say, though, because I don't have to leave the house to work, and I don't have children or other family members that need care from me. 

I am feeling optimistic about the new anti-virals that hopefully will soon get approval from the FDA/CDC, as they will be one more weapon in our arsenal.  I'll get my booster (the fourth shot for me) in February, and, well, then I will have done all I can do.  That said, I do still feel that we SOTRs have a massive target on our backs.

My husband's family has had some crises lately, and I have used the "Lack of IMMUNOGENICITY" as my very valid excuse not to get involved.

And yeah, too many people think we have no lives and should just stay home, but sod them.  Harumph.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kristina
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« Reply #15 on: November 13, 2021, 02:44:57 AM »

Many thanks for your kind and thoughtful replies, MooseMom and UkrainianTracksuit.
Your observations and experiences are most interesting and I can relate to them and, UkrainianTracksuit, please don't think your thoughts in your second letter make no sense because your observations very much do make sense and MooseMom I love your "Harumph-thoughts" of resistance, you are certainly not beaten that easily, are you?!!! 8)
... At first I had no problems at all, especially not after my first two Covid-vaccinations, when everything went alright and even though my third vaccination took place quite a while ago, I did notice a certain sadness, total exhaustion and feelings of hopelessness slowly "creeping in" and even though my medical situation is a bit difficult to take at the moment anyway by me still not being diagnosed yet for this constant debilitating pain after "my" kidney-transplant three years ago, the side-effects of the third Covid-vaccination seemed to exaggerate my situation quite a lot, bit by bit. At first it was not obvious, because it "crept in" very slowly and was hardly noticeable at first, but then it slowly became "louder" and right now it is pretty obvious, that there is a problem and only after speaking with neighbours and asking acquaintances and friends who are over 50 years old, I began to realize that we all seem to have the same and/or very similar symptoms and then, after asking and researching further and comparing experiences, there is  only one answer left and that is that it seems most likely to be the result of our third Pfizer-Covid-vaccination...
Mind you, staying at home and not being able to carry on in the same way as before might have a "dampening" effect at the moment anyway, but since I am in any case "more of a bookworm" and trying to play the pianoforte etc., which are "inside-the-home-activities", it became more obvious, that this current sadness and many of the other almost negative symptoms are certainly not me at all.
Let's hope, "things" improve very soon for all of us and I wish you all the best of luck in dealing with "it all", because it certainly can be very difficult at times ...
Take great care and best wishes from Kristina. :grouphug;
« Last Edit: November 13, 2021, 02:47:54 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #16 on: November 13, 2021, 08:52:08 AM »

Kristina, I have found that, personally, I can carry in my soul the weight of a lot of heavy burdens UNTIL something small goes wrong.  A couple of weeks ago, the "down" button on my water softener became stuck.  I was resetting it to meet the requirements of our local water supply which has a hardness of only 11.  The water softener had been set at "22", so I tried to use the "down" button to decrease that number to 11.  The button wouldn't work, so I used the "up" button, thinking it would reach the highest reading and then default downwards.  But it didn't work that way, and the hardness level got stuck at 50, which meant that I'd be using more water and softening salt than needed, and I hate.  (The silver lining to all of this is that I now know how a water softener actually works.)

Anyway, the point is that this one small simple thing threw me into a fit.  That was the straw that broke my camel's back.  (It has since been fixed, the water softener, I mean.)

So, Kristina, I am thinking that just maybe the third covid jab has been your last straw.  You have been living an extraordinarily stressful life for three years, and I am wondering if the mild side effects of the third jab (which seem to be more common that I'd realized) was one stressor too many for you.

Most people over 50 have lived long enough to have accumulated more than one source of stress and worry.  I have to wonder if some of them also have had that same straw broken.

I also think you are correct in suspecting that being at home for such a long time makes it harder to find pleasure and distraction from the world outside and all it has to offer.  I know it is hard for you to go for a simple walk in some of the wonderful parks in London, especially at this gloriously autumnal time of year.  My own garden is glowing from the yellowing of my sugar maples, and some days I have to make myself stop working and allow myself the simple joy of just sitting on the deck, looking at my own lovely trees. 

Chronic pain is enervating in all possible ways.  You've had to deal with it for years now.  I don't know if there is a direct link between the third covid jab and mental/psychological health, but in your case, such a link would not surprise me.

I hope you feel better soon.  Do you know Richard Osman of "Pointless" famie?  He has written a very funny book called "The Thursday Murder Club", and if you can perhaps get a copy from your local library, I'd wager that reading it would provide quite a few giggles.  He's just written a sequel called "The Man Who Died Twice" which I am reading now.  Neither are "educational" reads, rather, they are sly and clever fictional reads with interesting characters.  And, they are very "British".  Had I not lived in the UK for so long, many of the references would have flown right over my head.  Maybe give it a try?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kristina
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« Reply #17 on: November 24, 2021, 04:38:44 AM »

Dear MooseMom and many thanks again for your kind thoughts and I am sorry for your problems with the water-softener threw you, bevor it was fixed... and you might be right, that my own “last straw “ was the third corona-jab which might have been one stressor too many for my body and me … for the moment. Fortunately, during last week with all those heavy heavy antibiotics has made “things” a tiny little better for me and now I “only” have to recover from the side-effects…

Many thanks for pointing out Richard Osman and his book “the Thursday Murder Club”. I shall look into that …

About the Covid-anxiety it seems, as if there might be a problem developing in the UK at this moment, because, as of November 21st 2021 the Covid Vaccine-doses are as follows:
                                                         First doses:      50.78million of the whole UK-population took part,
                                                         Second doses:  46.17    "
                                   and the Booster (third doses):  15.33    " which is a huge decline in taking-up the free offer to continue and be safe and vaccinated...

It seems, as if many people don’t quite believe in "all that" any longer. This disbelieve is also emphasized by the fact, that we can see that many Members of Parliament (MP’s) are not even seen wearing their mask in Parliament during a session, where they practically sit next to each other. Our MP's are also not seen to get vaccinated either …
This is a very confusing situation and many questions need to be answered, but the huge decline in the willingness of the population to be further vaccinated is a bit frightening and speaks volumes ...

Many thanks again for your kind advice and thoughts from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly

« Reply #18 on: November 24, 2021, 10:14:03 AM »

Dear Kristina, I don’t think you have to worry about the uptake of the booster-jab yet. They have started only weeks ago, my husband hasn’t had his invitation yet either….
















Mod sp Cas

« Last Edit: November 24, 2021, 10:15:10 AM by cassandra » Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
kristina
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« Reply #19 on: November 25, 2021, 02:38:17 PM »

Dear Kristina, I don’t think you have to worry about the uptake of the booster-jab yet. They have started only weeks ago, my husband hasn’t had his invitation yet either….
















Mod sp Cas

Dear Cassandra, here in London most doctors and hospital-staff are very keen to administer the booster-jab as soon as is possible in order to avoid another Covid-flare-up with another lock-down over Christmas & New Year and because of this, many people and neighbours, including myself have already had their third vaccination-jab.
I do hope you have your booster-jab very soon as well and hopefully this frightening Covid-spook is over very soon ... but it does not look as if life could possibly continue as it was before Covid? What do you think?
Good luck with your a.s.a.p. booster-jab and best wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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