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Author Topic: The covid vaccine  (Read 516 times)
MooseMom
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« on: December 12, 2020, 11:40:31 AM »

A/The vaccine is finally here, or is about to be, depending upon where you live.  Since we are all in a high risk category, how are you are feeling about the vaccine's efficacy and safety?

My neighbor told me the other day that he was talking to another neighbor who happens to be an RN.  He asked he what she thought about the vaccine' s safety, seeing that it seemed so "rushed".  She explained that actually making the vaccine was not all that difficult, rather, that what usually makes the rollout of a new vaccine is the red tape that is always long and very sticky.  She felt very confident that the vaccine will be safe.

I had my annual post-tx check up yesterday, this year's appointment being via telephone.  I asked the neph what she thought about the vaccine, and she told me that they had all had a meeting/lesson about the vaccine and that at first, she was not happy about the fact that it had been rushed.  But, she told me, that when she learned how much money had been invested by so many governments (usually, clinical trials are often slowed by lack of funds), and when she learned how many clinical trials actually "overlapped", she felt reassured. 

So, have any of you had your renal team say anything to you about the vaccine and if/how you will get it if indeed you want it?
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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."
Michael Murphy
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« Reply #1 on: December 12, 2020, 08:28:40 PM »

Getting the vaccine early is somewhat of a gamble but currently leaving my house to go grocery shopping is also a gamble.  I think getting the vaccine is safer then trying to avoid the increased number of infected running around.  The fact that currently over 3000 patients are dying every day and that number could by some estimates reach 5000 before the pandemic breaks just shows how virulent this damn virus is.  I grew up in the late 60ís and the question every on asked how would you like to be the last one killed in viet nam.  Now the question is how would you like to be the last victim of COVID.  I am 69 almost 70 and my health is not great, if the vaccine may kill me I figure it will be easier than 4 weeks on a ventilator and having to fight for air till I die.  I also think if it was dangerous the Biden team would let the public know, in like the last sorry excuse for a president who mentioned in passing drinking bleach may help.
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Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #2 on: December 13, 2020, 08:02:09 AM »

In our video teleconference with Mayo-regarding us all getting Covid over Thanksgiving-Mayo said that at this time the are NOT recommending their transplant patients to receive the vaccine. The head doc said they want more data points on the safety and effectiveness before giving the green light.
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My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
UkrainianTracksuit
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« Reply #3 on: December 13, 2020, 10:20:07 AM »

I think I am way down the list to be vaccinated, to be honest. A UK doc (I'll post a link to his op-ed) said something like he expected transplant patients to be vaccinated by the spring, but I don't think it will affect me that soon at all, to be honest. Oped: https://wtgf.org/wp-content/uploads/2020/12/TransplantWorld-2-2020-WTGF-Journal.pdf (Hit up page 4).

My renal team won't speak about it because I'm a post-tx patient so I have to refer to infectious disease at the tx center. They haven't reached out to me yet (nor has the transplant center in general) so I'll see what happens. Guess I could call, but that seems like really ahead of the game to ask. Just keeping my eyes peeled in case there is a public bulletin posted rather than a direct letter in the post.

The other thing is that I have heard whispers that we could end up with the Moderna vaccine, which hasn't been approved yet, since we don't have the fancy freezer storage facilities in bigger cities with better hospitals. I haven't heard much about the Moderna vaccine once I heard these whispers so I went looking for info and found this: https://asts.org/advocacy/covid-19-resources/asts-covid-19-strike-force/transplant-capacity-in-the-covid-19-era

Long story short, tx patients weren't in the studies, thus little to no data (as mentioned here) thus just hypotheses that all will be good because these sorts of vaccines are well tolerated in the tx population, and data will come. At least from this, I know to avoid the AstraZeneca and Johnson & Johnson vaccines, because they are based off live virus. They might be the ones that end up here too because of their less stringent freezer requirements.

So, I'll see what this region gets in regard to which vaccine and go from there. I'm not a rush to get it, but if it is a requirement to travel internationally (like has been lightly discussed), I'll go from there. But, the big question for me right now is WHICH shot will we have?! And then see the data...
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iolaire
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« Reply #4 on: December 13, 2020, 11:05:59 AM »

My nephrologist who is on the transplant team talked in mid November like the assumption is I would get it as soon as itís offered to me. I hope by my January appointment we will know more. I donít think there is a rush for me since Iím Virginia the first responders and nursing home folks will cover the supply for a bit.

I read about the side effects this morning and so far it seems like an inconvenience but not worth worry about.
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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.
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« Reply #5 on: December 16, 2020, 09:49:09 PM »

In our video teleconference with Mayo-regarding us all getting Covid over Thanksgiving-Mayo said that at this time the are NOT recommending their transplant patients to receive the vaccine. The head doc said they want more data points on the safety and effectiveness before giving the green light.
Good to know.
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Riki
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« Reply #6 on: January 09, 2021, 05:08:15 PM »

I've decided that when/if the vaccine is offered to me, I"ll get it.  I know that it's not recommended for those who are immunosuppressed, but since I'm no longer a transplant patient, I don't think that will be an issue.

We have two vaccines here on Prince Edward Island, and they've just started vaccinating those who live and work in long term care homes.  I don't think they'll get to me until sometime between April and September.
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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 #7 on: January 10, 2021, 02:15:04 AM »

... I am still wondering about the new vaccine ...  and what it is all about ... and ... I have not heard a word from "my" medical team and ... I have been reading, that getting the vaccine seems to be a completely different situation for transplant-patients because of their medication ...

Right now I continue to keep myself totally isolated and as healthy as is possible and I keep my moaning about the hernia-pain as much as is possible to a limit and I also try very hard to keep the pain-killers to an absolute minimum in order to protect my new kidney as much as is possible ... and ... I have already been told that any hernia-operation/repair is out of the question right now since all our hospitals seem to be full-up with covid-patients.  :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 ...
SooMK
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« Reply #8 on: January 11, 2021, 11:31:39 AM »

I had an email from my clinic about the vaccine. They are expecting to offer it to everyone eventually. They referenced a FAQ from the American Society of Transplantation that said, among other things, "Most transplant recipients and candidates will fall under ďpeople at high risk for severe COVID-19 due to underlying medical conditions.Ē ACIP notes that persons on immunosuppressive medications might be at increased risk for severe COVID-19 and that data are not available at this time to establish vaccine safety and efficacy in these individuals. They recommend that these people may receive COVID-19 vaccine along with counseling that there is unknown vaccine safety and efficacy profiles. In addition, there is a potential for reduced immune responses in those on immunosuppressive therapy."

I have a clinic appointment in March (haven't been there in 2 years!) and hope that maybe I can get the vaccine, all things being equal.
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SooMK
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Transplant April 2014
MooseMom
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« Reply #9 on: January 11, 2021, 07:31:51 PM »

Thanks so much for your post, SooMK.  Let us know when you actually get the vaccine as it seems that we are still in the very early stages of the vaccination roll-out. 
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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."
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« Reply #10 on: January 13, 2021, 11:55:19 AM »

I haven't checked in regularly in a while. I Had my transplant about 13 years ago and was on this site every day I was on dialysis leading up to my transplant. I do check back from time to time, but not often enough. But this time I was checking to see if anyone had any information on the Pfizer Covid vaccine. I will be receiving it Friday January 15th. I will come back and report on any issues or complications I have once I get my first dose. I'm getting it at the Baltimore, Veterans Affairs Hospital.

My transplant is going awesome, and I'm just nervous I'm messing things up by getting the vaccine so early in its stage. However, I want to travel this summer and I'll feel better if I have a vaccine before doing so. The con of losing my transplant or dying are bad, but they are also extremely unlikely. It seems since I was diagnosed with Kidney failure in my 20's, my life as been all about fighting the odds and hoping for the best.

I'll let the group know how it goes Friday!
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cassandra
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« Reply #11 on: January 13, 2021, 12:46:08 PM »

Nice to hear from you Jaybird! To be honest I found Michael Murphyís message convincing enough. Who do I think I am that I can luck this out?


Stay safe please all my dear dear friends  :cuddle;


Love, Cas
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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
       still on waitinglist, still ok I think
MooseMom
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« Reply #12 on: January 13, 2021, 12:52:36 PM »

Oh wow, 13 years!  That's brilliant!  Thank you for checking in and letting us know that all is well with you.

I suspect we all feel the same way you do about the vaccine.  We've worked so hard and have been through so much to want to take on any extra risk.  I worry about the risk of getting covid and having it attack our kidneys (transplanted or not).  During my annual post tx check up, this year by phone, my tx neph told me that they've had some tx patients get covid; some they expected to do OK did not, and some they expected to become really ill did not.  It's just so random, you know?

I happened to speak with my tx pharmacist today and asked him about the vaccine.  He said that it was certainly recommended for all tx patients and that there is no evidence at this point in time that it would be any less safe or less effective than it would be to anyone else who might have a compromised immune system for whatever other reason.  However, to be clear, when we discussed "the vaccine", we didn't make a distinction between the ones available.

It would be really great if you could check back in with us after you've had your jab and let us know how you are feeling and what you were told to expect.  Thanks so much for offering to do that!

Best wishes to you, Jaybird!!  It's fantastic hearing from you again!
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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."
iolaire
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« Reply #13 on: January 13, 2021, 04:02:55 PM »

Has anyone read about a test to see if your vaccination is still protecting the patient? 

For example they can do a test to insure your hepatitis B vaccination is still protective. (Hopefully Iím right with the hepatitis example.)
« Last Edit: January 13, 2021, 04:04:05 PM by iolaire » Logged

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.
Jaybird
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« Reply #14 on: January 14, 2021, 06:25:31 AM »

I spoke to my Kidney Transplant specialist this morning and verified they are indeed calling out to Transplant patients to get the vaccine. They were surprised I already had an appointment this Friday though. I'm going to do blood work an hour before the transplant to see what if anything changes after the vaccine.

When you call the VA hospital in Baltimore, they have a prerecorded message about vaccines being rolled out and that they are not many available. But I have a theory that they becoming available to those further down the list because of the amount of people turning them down up the list. I have a few relatives that work in healthcare and they say less than 50% of the hospital staff are taking the vaccines. I'm sure this varies from geographic region to region.


I did a little research on the difference between Pfizer and Moderna vaccines and am glad I am getting the Pfizer one. Its a MUCH smaller dosage and has a 1-2% higher immunity rate. Other than that, they are pretty close in what they do. Supposedly the Pfizer one is for 16+ and the Moderna one is 18+ and also being tested in 12-17 area now. As far as side effects, I heard that the stronger your immune system is the bigger side effects you can expect to feel. This is why younger healthy people have strong vaccine "hangovers" than older people or those on immunosuppressants.

For background, I'm 41yr M, with a 13yr living donor transplant. Besides the transplant, I'm in decent shape (not overweight), no diabetes or anything else to report of. My December creatinine levels were 1.44 (I fluctuate between 1.4-1.7). I'm definitely on board to report any side effects etc... on here after tomorrows appointment. Wish me luck! :beer1;


 
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MooseMom
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« Reply #15 on: January 14, 2021, 10:15:40 AM »

Oh, thanks for that, Jaybird.  We all really look forward to hearing from you tomorrow and in the days ahead!  Good luck!!
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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."
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« Reply #16 on: January 15, 2021, 02:26:53 PM »

I received the pfizer version this morning. It's 8hrs later and I have localized soreness, I feel fine but was a bit extra tired today. I took a nap when I got home after eating. I will upload some of the documents I recieved when I can. I'll also update any crazy changes if I have them. So far, nothing unexpected.
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iolaire
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« Reply #17 on: January 15, 2021, 07:47:44 PM »

Thanks for the update JayBird
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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.
MooseMom
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« Reply #18 on: January 16, 2021, 08:53:26 AM »

I was hoping you'd post today, Jaybird, so thank you for the update.

I got the two doses of the new Shingrix vaccine when it came out a couple of years ago.  Both times my arm got really quite sore and red, and I didn't feel so brilliant, either.  But I didn't care; it was worth it to have a modicum of protection from shingles.  I would go through the same again if I knew the result would be a better change of surviving covid.

You know, I have not really been all that terribly concerned about covid until now.  I've been perfectly happy to stay at home.  But now with all of these new variants slashing their way through the world, I'm starting to get quite uneasy.  I look at someplace like the UK, a place that values their "freedom" so much that they broke away from the EU, and see how they are embracing lockdowns because of the sheer number of new cases they are seeing there, and I am starting to feel a little panicky. 

I worry that since we can't seem to get a good vaccination program rolled out, and also since we don't seem to have the reserves of vaccine we were told we had, we will start to see more variants that will infect more people more quickly.  I worry that the result of this will be that the vaccines we do have will prove to be ineffective as more infections result in more mutations, some of which may be more lethal and/or more resistant to our vaccines.

These worries have really drained me the past few days,  I had always felt relatively calm and patient, but not anymore.

Anyway, Jaybird, I am very glad that you got your jab!
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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."
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« Reply #19 on: January 16, 2021, 03:41:18 PM »

I worry that since we can't seem to get a good vaccination program rolled out, and also since we don't seem to have the reserves of vaccine we were told we had, we will start to see more variants that will infect more people more quickly.  I worry that the result of this will be that the vaccines we do have will prove to be ineffective as more infections result in more mutations, some of which may be more lethal and/or more resistant to our vaccines.

This.

I'm like you MM in that I am starting to feel uneasy on the whole handling of the entire matter. Heck, vaccines haven't even cross my mind much because it seems like an eternity before they begin to vaccinate the area. The government pretty much said they haven't really given deep thought (yet) about how they will start to move shipments outside the hot zone (south) of the province. The whole initiative is lagging and it seems like only a paltry number of LTC residents and health care workers have been vaccinated. Meanwhile, I've seen transplant patients in the priority group in other countries and already had their first vaccine.

Right now, we've been lucky that the current vaccines can handle the new mutations, but if this keeps to rapidly spread, and people still continue to travel overseas, who knows. Wrap your head about finding a Brazilian variant in Japan!

We'd had a spike of cases locally so our lockdown got extended only to turn into now a full on state or emergency/stay at home orders. Media reports say the governments weren't prepares for the second wave. Just fed up. Our ICUs are above capacity (thank goodness, locally, we have some room) and now we're at the point of doctors deciding who gets a bed. The only factor in my favor is youth. But, if another healthy person in the same age needed a bed versus me, well, we all know who'd the medics would choose.

I'm not one of the people that view the vaccine as the "holy grail" but rather a tool in a multifaceted approach. So, I kind of feel indifferent about it because it is something truly out of my hands. Obviously I will get it when/if offered, but it isn't as if we'll all go immediately back to normal. I'd feel better if more therapeutic drugs were found/approved to be honest.
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MooseMom
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« Reply #20 on: January 16, 2021, 06:56:10 PM »

I agree that the vaccine is not the holy grail but is instead one more tool in our arsenal, which could use as many weapons as possible.  I also agree that it would be preferable to have more therapeutic drugs/treatments available.  I'm not really sure exactly what IS available in that regard.  All I know is that I'm feeling a lot more skittish than I did just a month ago.  These just seem to be particularly perilous times in many ways.
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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."
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« Reply #21 on: January 17, 2021, 08:12:42 AM »

... There are currently about three (?) different (?) vaccines on the "forefront of the market" and they have been licensed in : 1) the UK (Oxford), 2. in the EU (Pfizer) and 3. in the US (one of the aforementioned or another new one ?).

My question is now : which vaccination is the safest and/or are they all the same and/or how do I go about getting a vaccination for myself with which vaccine as a non-medical person ? Have you all been contacted by your medical team? Or have you just walked into one of the vaccination-places?

Many thanks for your kind answers from Kristina. :grouphug;

 
« Last Edit: January 17, 2021, 08:20:35 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 ...
UkrainianTracksuit
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« Reply #22 on: January 17, 2021, 08:51:52 AM »

If you scroll up, you can see I posted a link to an American Society of Transplant Surgeons vaccine overview. Here is the link again:  https://asts.org/advocacy/covid-19-resources/asts-covid-19-strike-force/transplant-capacity-in-the-covid-19-era

Not that it answers all your questions kristina, but the Oxford-Astra Zeneca and Johnson & Johnson vaccines have not been recommended for transplant patients. Why? Word for word from the document: They are both adenovirus vector vaccines where the coronavirus genetic material is carried into the cell on a live virus. That is subsequently followed up with Historically we have not recommended live viral vector vaccines for transplant patients that take immunosuppressive agents. The safety for the severely ill waitlist population could also have difficulty clearing the viral vector.

So, your best bet will be with the approved Pfizer and Moderna vaccines.

No one from my medical team has spoken to me about vaccination and that is pretty normal for someone in the "general population" for Canada. Not expecting to be vaccinated until autumn. Not sure how quickly the UK is vaccinating its target groups and if vaccines are available to you yet. Perhaps search your public health authorities and see which hospital hubs are offering clinics? As well, your GP probably holds the best answers, so arrange a telephone chat.

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kristina
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« Reply #23 on: January 17, 2021, 09:47:36 AM »

Many thanks UkrainianTracksuit for your quick answer and kind explanation, it is very much appreciated and I shall look forward to find out which of these vaccinations the medics are going to give transplant-patients here ... and ... so far I have not heard a word ...

... I do hope that you and your husband are doing as well as is possible and I have been wondering whether or not it might be a good idea if your husband has one or two more blood-tests taken at an independent place to make sure whether the last blood-test might have been a mistake - or not? What do you think?

Take great care and I send you my kind thoughts 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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« Reply #24 on: January 17, 2021, 01:53:29 PM »

... I do hope that you and your husband are doing as well as is possible and I have been wondering whether or not it might be a good idea if your husband has one or two more blood-tests taken at an independent place to make sure whether the last blood-test might have been a mistake - or not? What do you think?
We have definitely thought about that. Well, not an independent place, but another lab. He has requisitions for more blood work, but he had to book an appointment (lockdown situation) rather than walk-in. The earliest he could get in is the 29th. Hopefully the results come before he gets booked for the biopsy and aspiration. Thank you so much for your concern!  :cuddle;
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