Vaccine hesitation : As some who has had... - British Liver Trust

British Liver Trust

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Vaccine hesitation

Rockefeller20 profile image

As some who has had a liver transplant and on immunosuppressants obviously and also having had a portal vein thrombosis I’m reluctant to have the covid19 vaccine

As reported early on in this “pandemic” certain vaccines were and still are responsible for clotting, besides the clotting issue the fact I’m on immunosuppressants and this MRNA vaccine triggers an immune response what’s the point of having it if I’ve a suppressed immune system, I’ve asked this to my consultant and as there’s no long term data has said he doesn’t know, and besides this being an experimental vaccine it doesn’t stop you getting or spreading it

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25 Replies

So basically you wanted to spread some misinformation on a forum for people with very serious health issues? I would have thought some who'd had the gift - a liver transplant - would have more consideration for vulnerable folk. Silly me.

nutrimar profile image
nutrimar in reply to

What misinformation?

Rockefeller20 profile image
Rockefeller20 in reply to

Where’s the misinformation?

in reply to Rockefeller20

You know what you’re doing. This isn’t a political forum. Why put ideas into the heads of vulnerable folk? Bad form sir.

Rockefeller20 profile image
Rockefeller20 in reply to

Political? I’m expressing my opinion and my opinion alone on why I’m reluctant to have the COVID-19 vaccine at this point in time As I’m aware having the vaccine is about a virus? so this being a health issue nowhere did I mention politics, so I’ll ask again where is the misinformation?

And don’t “bad form” me Phil as you don’t know me and don’t know my medical situation

in reply to Rockefeller20

You know what you're doing with the use of "" around the word pandemic and also referring to vaccinations as experimental. As I said posting like you are in a group for vulnerable people is inappropriate. Let's see what the administrators have to say eh?

BlueAster profile image
BlueAster in reply to

I don’t agree that this is misinformation, it’s an opinion. If someone hasn’t seen what severe covid can do first hand to a healthy person, let alone a vulnerable person, that’s not their fault. Also if you haven’t seen the horror of what happens and the end of someone’s life with Covid and it’s complications, it’s easy not to be able to identify with.

Everything is new and we will find out more, but we know vaccination does work and helps stop the spread. 1000 people died last week.

BlueAster profile image
BlueAster in reply to

We also have to remember that if we don’t get vaccinated, more of us will be admitted to hospital because we’ve caught it ourselves, and spread it, which then will delay all of normal services including liver. There will also be no staff if we keep going as we are.

Hi Rockefeller

I'm happy you got your transplant, that is good news for you and all of us on here.

As for the vaccine, that is entirely your choice. We all have the option. Had it not been for vaccines, diseases like diphtheria, whooping cough, measles, chicken pox etc would still be killing people daily. The vaccine has been given to millions and millions of people globally, so (personally) I feel it is safe to assume we have enough data to consider it safe for 99.99999%

There is always a risk in everything we do from breathing to flying and any choice might put us in the 0.00001% we just have to weigh up the pro's and cons for ourselves.

It is very possible, after having two doses of vaccine that I may still contract covid.... however, now I do not think it will be as dangerous to me as it felt before my vaccinations.

But we should all still stay safe and remember we also have a duty of care to others as well as to ourselves.

Take care

Dave

I'd say don't mind others, it is your choice and as a Biomedical Data Scientists, there are legit reasons given your circumstances to want to feel things out. Nobody can sit here and say without a shadow of a doubt that there aren't any side effects because there have been reported ones. Also, this is still a very new vaccine, long-term data is non-existent. Many vaccines, drugs, medical practices undergo 14 years of testing, this was >6 months, who knows what the future will yield. Could it be good, yes. Could long term health conditions, start popping up, yes. I say go with your gut feeling and do your research. Many have already had COVID and didnt even know it, so maybe get an antibodies test to see if you have natural immunity with IGA. My wife actually did have serious side effects and she is now going for an echocardiogram in a few weeks. People will say, well think of others, well, as a veteran of the Army, nobody was there for me when I got injured and the country treated me like dirt. I say, do whatever makes you feel comfortable! Your doctor gave you some really sound unbiased feedback.

Rockefeller you are entitled to your opinion but I wanted to let you know that a lot of the claims you are making on this post- like that its an experimental vaccine- are wrong.

Rachel299 profile image
Rachel299 in reply to Jay757

Clinical trials and safety measures including dose range finding usually take 4-10 years and I’m afraid the “emergency use” authorisation until 2023 has bypassed that, along with negating liability, there is no long term safety data simply because this is the clinical trial phase effectively and it’s literally not been administered long enough.

My husband has had his plus his booster & has been back in work as a chef since May (transplanted in 2018) & thankfully neither of us have had C19 yet, & I work in a school

The only reasons that the vaccines were developed so quickly was because of the amount of working hours & money that were put into the development of them, & working knowledge from previous vaccines - how do I know this -a work colleague's partner was taken off his work for another vaccine & she barely saw him during the 1st year of the pandemic.

You are best speaking to your GP & consultant to get more information about the vaccines, there is a lot of misinformation around

Up to the OP what they do, I caught Covid early on (March 2020), still had the vax Feb 21 as told it provides ‘superior immunity’ (still not proven) suffered with headaches for 6 months afterwards so refused the second jab. Despite what I think are legit personal reasons, because I haven’t been double jabbed, I am in effect discriminated against - eg foreign travel etc.

Should always be a case of personal choice. Last time I looked, there was a 7% difference between those who had single & double jabs. Wonder why?

Had transplant may 2017, have had 3 primary doses of the vaccine, first 2 astrazenica 3rd one pfizer as strongly recommended by my transplant team. Have had no side effects whatsoever. I also had portal vein thrombosis, portal vein completely blocked.

Hi Rockefeller. My hubby although doesn't have liver disease does have an immune suppressed condition and has to take medication which carries a risk of blood clots which he now has. He has had 2 Pfizer jabs and his booster and has had no ill effects. Hope this helps to reassure you.

Laura

Following my transplant, my platelets are just back within range, prior to being transplanted, I would require regular platelet transfusions. So clotting is low on the list of things to worry about. The incidence of having a problem after being vaccinated is about 0.00001%. It’s considerably lower than the potential issues that you would have, were you to catch the Covid virus, as an immunosuppressed patient.

I have had three Pfizer vaccines with no issues whatsoever, the flu jab gave me an ache in my arm for about a day.

It’s entirely your choice but I recommend that you get yourself vaccinated ASAP, if nothing else, it will prevent the virus from spreading.

It's quite simple, if you don't want it don't have it, just don't blame anyone other than yourself if you do catch it and are seriously ill or worse. As for it being an "experimental vaccine" I am afraid that ridiculous statement gives your game away chum.

I couldn’t agree more. Very wise decision. My dad is in a similar situation RE portal vein thrombosis but can’t have transplant. He was pushed to have the first two and the consultants continue to repeat the same line “get vaccinated” however, he’s since had terrible stomach infections and needed strong antibiotics and my mum suffered a horrific reaction to her first and only jab and months later is in constant pain still. Neither of them will be having another and I dread to think what damage it’s done, no support from NHS all the medical “professionals” say is “you must get the next jab. Feels like they’ve forgotten their Hippocratic oath to be honest. Good to know there are still some sensible caring medical professionals out there. Take care and best wishes

Go with your instinct. Plenty of evidence among people l know of, including medics, that it doesn't suit everyone. Stack up on vitamins. Good luck.

I had my transplant in Dec 2019. Due to non liver complications I nearly died. I so grateful to be here and have had 3 Pfizer vaccinations. Had terrible reactions to the 2nd one, but for me the benefits out weighed the risks. Will I have another vaccination if it is recommended YES! I have my life back, thanks to a wonderful donor and not only am I looking after a precious gift I am looking after others by, wearing a mask, hand washing and using sanitizer and not spreading the virus. Grateful every single day to everyone involved in getting these vaccines out and to the staff in the vaccination centres🙏💜👍

Hi Rockefeller

The issue with the vaccine is about risks. Yes you could still catch it and pass it on if you do. But that no different from the annual flu jab. The difference is in outcomes. NHS data already shows that in those who are immune suppressed and vaccinated are far less likely to die or suffer serious consequences compared to those that are unvaccinated. Again this is the same outcome as the yearly flu jab.

You mention your risk of clotting being of concern given you had portal vein thrombosis prior to transplant. I too had portal vein thrombosis to an extent where on side was completely blocked and other significantly blocked. I also had a couple of other clots in my upper chest area. However the cause of these clots was down to the fact that blood couldn't flow through the liver and therefore the reduction in flow or speed of flow allowed the clots to form. It wasn't a blood clotting disorder more a function of the fact that if blood pools, which it does on the approach to the liver with portal hypertension, it will naturally clot.

Yes it has been reported than some people have had blood clots after receiving the vaccine, but those numbers are infinitessibly small. Indeed I'm sure if you looked it up there's probably lots of medicines that have a higher incidence. In fact I think they did say that the incidence of those that had suffered clots after having the vaccine was actually lower than the incidence in the general population.

At the end of the day its about risk. Your risk of having adverse consequences from the vaccine are significantly lower than your risks of having adverse consequences from having covid. Yes ypu may still catch it a feel a bit rough for a week or two, but your much less likely to end up in hospital or die from it.

At the end of the day its your decision but all the advice from the vast majority of the scientific and medical community is to have the jab.

That’s a tough call to make and I don’t have an answer for you. I’d maybe try to contact your hepatologist or transplant team but even they don’t “really” know the answer either. The vaccines were indeed rushed out and have not undergone the same length and breadth of testing and data accumulation normal drugs or vaccines are required to get. It’s just the nature of trying to get an urgent fix. And statistics don’t mean much if you are the bad statistical anomaly. Having a transplant already means you are a statistical anomaly as it is and there would be even less (if any) real studies on the effects in that population. It’s entirely possible that even your doctors are only working on best working assumptions and hopes.

It’s down to personal choice.I had my transplant May 2020. Had 2 AZ vaccines, the 3rd Pfizer last month and the flu vaccine on the advice of my consultant with no side affects.

Finally woke up this morning after 5 weeks of the most awful flu (neg covid) which was in danger of developing into pneumonia but thanks to a course of antibiotics and rest I actually feel like my old self again. The last time I had flu was in 2004. This flu bug is everywhere. My tac levels are down for the first time in 17 months but with monitoring & feeling better, know they will be fine again. Personally, I’m glad I’ve had all the jabs but that’s my choice and I respect other people’s decisions.

Trust1 profile image
Trust1Partner

We have received many reports of abuse about this post.

We are aware that if you or a loved one is immunosuppressed you have particular worries about the coronavirus (COVID-19) and the effectiveness of the vaccine. We have raised these concerns with government and seek clarification from DHSC and clinicians on a regular basis. Here are some answers to some of the most pressing questions you may have.

britishlivertrust.org.uk/up...

If individuals have specific concerns then we would suggest to speak with their own GP's and liver specialists who have access to their complete medical record.

We request that forum members respect each others choices and remember this is a peer to peer forum.

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