Question for Maz

[piggie50]

Hi Maz, I hope you are well.

I don’t know if you can help with this?

I know this question has been raised before but I don’t think there was a definitive answer. Regarding the changes to organ donation in England, are us with MPN’s able to donate?

I have looked on the NHS website and it states...

“You should only opt out if you do not want to be a donor. There are many medical conditions that will mean a particular organ cannot be used in transplantation but others could be used to save lives. The decision about whether your organs can be safely used to help others is established at the time of your death.

Your full medical history will be taken from your family, medical notes and GP notes, and your family also provide information about your travel and social history. This information is used by transplant surgeons to decide which organs can be safely donated and transplanted”

I want to be sure my next of kin have the correct information in the event of my death.

Thanks as always Maz,

Very best wishes Judy xx

[Aime]

Hi Judy I was wondering about that too. It's going to be the same in Scotland later on in 2020 so good question.

Hope you're well and family all good.

Kindest regards Aime xx😻😻

[piggie50 in reply to Aime]

I’m ok thanks Amie apart from a cough, sore throat and husky voice for over 2 weeks now, can’t seem to shift it!

Family is all good. I hope all is well with you.

Judy xx

[Aime in reply to piggie50]

Hi Judy, yes snap with the sore throat but my throat is like sandpaper through the night because of lack of saliva but got consult with gp tomorrow post blood tests so will see what he thinks. I really do want a diagnosis from these symptoms so I can get just on with it!

Got a GI appointment next fri as haematologist is a bit concerned because hematocrit and iron so low without venesection for ages. So will see what that brings too but to be honest I'm actually managing to take it all in my stride so far.xx Practice makes perfect!xx🤣🤣😻😻

[Simris in reply to Aime]

Hi Aime,

This is just answer to part of what you were saying about throat being like sandpaper at night. I was having problems with very dry mouth at night and so bad little sores in roof of my mouth. Anyway my haemo prescribed moisturising mouthwash (a suggestion by my pharmacist) and dryness in throat much better. Hope this suggestion helps.

Love Phyllis x

[piggie50 in reply to Simris]

Hi Phyllis,

Is this available off prescription? I am suffering with my throat but have also burnt the roof of my mouth twice in the past week from hot food. Very silly of me but I hate eating a cold meal so tend to dive in. Plus, I’m always hungry.😂

Thanks Judy

[Simris in reply to piggie50]

Hi Judy,

This was only available to me by my haemo (don't think you can buy in pharmacy), I've found it very good for dry mouth/throat overnight.

I wish you all the best.

Phyllis xx

[Aime in reply to Simris]

Thank you Phyllis, will try as my throat is sore plus like you, small sores on mouth and tongue. Not pleasant! Kind regards Aime x😻

[Mazcd Partner MPNVoice]

HI Judy, yes thank you I am very well, hope all ok with you. Just fed up with this weather though, very muddy here in Beaford!

Answer from Prof Harrison is in general it's a no for MPN.

Best wishes, Maz x x

[piggie50 in reply to Mazcd]

Thanks Maz. Xx

[Irishgal12 in reply to piggie50]

So we cant opt in to organ donation I wonder why?

[piggie50 in reply to Irishgal12]

Opting in is the system in England and Scotland at the moment but from 20th May, everyone will be considered as opted in unless opted out, as in Wales.

[Helen1952]

Hi Judy

Max and Kieras law should be in force on 20th May. There is a lot of information about it on the Govt website.

There will be lots of specialists at the time to find the best possible matches for the recipients which would probably rule us out.

It is important that your family know your medical history for this.

No matter what a person decides it is important to share your wishes with your family.

Hope this helps a bit

Helen xxx

[friendofpiglet]

I have remained opted in to organ donation on the grounds that a decision can be made as to suitability upon my (hopefully not too imminent) demise. My corneas are still in reasonable shape and I can't imagine they'd be unusable.

[Irishgal12]

Following

[Chaz1]

As for PV patients the blood taken cannot be donated for use as a transplant we opted hubby out of the system because the nurses said no part of him would be used in donation so it means no one will be put at risk or have their hopes raised thinking he might be a donor should the worst happen. My friends husband recently had a double kidney transplant & they got called in twice & then sent home because the underlying conditions of the deceased meant that they weren't a suitable candidate. It was horrible for her & I'm sure the medical team felt awful each time. Maybe the future might find away for MPN patients organs to be used but if Prof Harrison says no then for the time being hubby will remain opted out x

[Irishgal12 in reply to Chaz1]

Why is it a no our organs r ok?

[Chaz1 in reply to Irishgal12]

If you look at Maz's response Prof Harrison says it's no. Its because MPN is within the whole body, blood cells are in each organ & they don't know how this might affect others if they were transplanted. So little is known that it would be neglient of a transplant team to allow an MPN patient donation to occur. Once more research is found about the conditions then it might change but obviously research is currently regarding mutations, treatment & a cure not on whether a patient can be a donor. After the aids & cjd scandals they will never risk it. Hubby sits there when he has his venesections as other patients receive blood and plasma transplants and thinks it weird that what has to be removed to keep him stable what others need to live but his blood bag just gets thrown in a bin as contaminated. Would be so amazing if he could have his blood to help others but too many unknowns at the moment. Maybe in the future there will be a way but thats research for later when a lot of others questions are answered.

[Irishgal12 in reply to Chaz1]

Oh no panicking that cancer is in all my organs

[Applesnpears in reply to Irishgal12]

No. The concen is about blood in your organs and the potential of your blood giving your disease to somebody else.

The risk of passing on your MPN to somebody else from donated organs is only theoretical and probably very low. However nobody wants to take that risk.

[Irishgal12 in reply to Applesnpears]

Ok but mpn cant be passed on in preg right?

[Applesnpears in reply to Irishgal12]

No.

[Chaz1 in reply to Irishgal12]

Please don't panic, that's not what I was meaning but your blood is in the whole body so there is much unknown to the effects of transplanting the organs into others. But managing an MPN is very well known and so many people on here are living very good long lives with thr support of amazing medical professionals. And that's the priority.

[Cassie11 in reply to Chaz1]

I went to donate blood before I was diagnosed with ET but was told right at the end that I couldn't because I have had breast cancer in 2003, which I am still free of.

[Chaz1 in reply to Cassie11]

Such a shame that stops donations but great that you are still breast cancer free x

[Cassie11 in reply to Chaz1]

Thank you x

[Applesnpears in reply to Chaz1]

I think opting out is the best plan.

Asking friends and family about your medical history is unreliable - they might not be available or simply not know. Having doctors chase down your medical history wastes their time and could create false hope for organ recipients. Nobody want the angst of getting it wrong or mistakes being made.

An opt out based on medical conditions shows that you care and have thought ahead.

[piggie50 in reply to Chaz1]

I agree with you Chaz1. My family know my condition but if the doctors insist on testing to see if I would be suitable just puts more stress on them when they already know the answer would be no. I’m thinking of opting out. X

[Chaz1 in reply to piggie50]

Yes, while you know you can't donate it saves everyone's time opting out. And you know why you have opted out. Most would donate if they could, I feel bad having opted hubby out when I encourage so many to register to be a stem cell donor. But if the worst happens and god forbid we were both killed in an accident his family wouldn't know he couldn't donate whereas they will know he's opted out and so the question doesn't need looking at. That's my own personal take on it.

[piggie50 in reply to Chaz1]

I totally agree with you and your reasoning. x

[Wyebird]

I looked into this. There are bits we can donate.

[Aime in reply to Wyebird]

Maybe I don’t want to know the answer to “which bits”!😻😻🤣😹😹😹😹

[piggie50]

What bits Wyebird?

[Wyebird in reply to piggie50]

Really can’t remember I spoke to a teaching doctor but I was devastated when told she told me that local med school didn’t need my body. They had too many!! Lol

[Stevesmum42]

So love this forum......Which bits? 🥴x

[Wyebird in reply to Stevesmum42]

Can’t remember . I even spoke to a doctor at my local med school. They don’t want ANY OF MY BITS too many bodies

[Stevesmum42]

Hi Judy . Hope you feel better soon. I’m not surprised our coughs, sore throats, etc are hanging around the weather is so depressing . We are ready for spring.

If any of you reading this has been affected by flooding my thoughts and sympathies go out to you. I cannot begin to imagine how you cope with such devastation.

The world is being severely tested at this time.....

[piggie50]

Thanks Sandy, hopefully when the weather gets warmer we will at last get to meet up. A stroll along Torbay sea front would be lovely? X

[Stevesmum42 in reply to piggie50]

That would be great....I can come to Exeter also x

[Sweetlucy]

Is age a barrier to organ donation? Who would want an 80 year old organ?