Organ Donation?

[Kari1961]

I've been on the organ donation register for many years and my Mum raised a query about this a few days ago.

Obviously our blood goes through every organ in our body, and having an MPN can cause problems with the majority: kidneys, liver, spleen etc

As I have an MPN (PV) and they can't use my blood, would my organs still be of use?

I hadn't thought about it until my Mum questioned it.

[Karen1970]

Hi. I was on the Anthony Nolan register for 25 years and carried a donor card and I asked my Prof this question and she said I had to remove myself as we could pass on our condition to others from donation. Hope this helps X

[Kari1961 in reply to Karen1970]

That's what I'm expecting Karen. x

[bordeauxgirl]

I too have PV and I signed my driving license this your for the first time to become an organ donor just in case ! But I too now have my concerns whether I would be a suitable donor. As I am seeing my consultant next week ( now three monthly ) I am going to enquire.So I will repost the answer after the visit. Hope your not suffering too much. Regards

[Kari1961 in reply to bordeauxgirl]

That would be great, thank you. I'm not seeing mine until May. All's good at the moment thanks (touching wood) Hope you're keeping well too. x

[bordeauxgirl]

Hello Kari, I will certainly ask the question, as well as many others, my doc doesn't get out of answering anything with me. I see him every three months now so I guess all is well.

Do you have any problems with skin rashes, my legs look like they are wrapped in a find bubble wrap along with incredible itching, I have had UVB light treatment at my local hospital,not really sure if it did much good.

I am on Hydroxy,so far so good.Anti-histamines,etc etc etc. Keep well my friend.Remote hugs coming your way. June.

[Kari1961 in reply to bordeauxgirl]

Hi June

Maz has answered after asking Prof Harrison and unfortunately we can't donate organs.

I don't suffer from any rashes, but do have bad itching, especially during the night. I don't take any medication for PV only venesection and aspirin.

Thanks for the hugs ~ sending them back to you (((( Hug ))) Karina

[stewartengineering]

I used to give blood and was on the register for bone marrow transplant, when I got PV my haematologist told me I could not donate my blood any more or donate any organs.

John

[Mazcd Partner MPNVoice]

Hello Kari1961, I have asked Prof Harrison for you, it is a no I am afraid, you cannot donate organs. Kind regards, Maz

[Kari1961 in reply to Mazcd]

Thanks Maz and thank Prof Harrison for me too. I'd better let my n.o.k know and remove myself from the list.

[Mazcd Partner MPNVoice in reply to Kari1961]

you are very welcome.

[Nickthedevil in reply to Mazcd]

Hi Maz does this apply to ET too?

Karen x

[Mazcd Partner MPNVoice in reply to Nickthedevil]

to all the MPNs I am afraid. Maz

[Nickthedevil in reply to Mazcd]

Thanks Maz

[bordeauxgirl]

Thanks for the info, oh well good intentions in my head...... God will know I was thinking of others when my time comes.lol

[Superwoman]

Gosh I carry an organ donor card after my daughters friend died of cystic fibrosis at the age of thirty two she was on the waiting list for a heart and lung transplant which never came, so all her friends and family signed up to the organ donation hoping that just maybe we could save a life or give sight once we have gone.

Would this apply to me with ET ? I presume it would, never gave it a thought 🤔

[BeckyM4]

I have PV. I was crushed when I was told I couldn't donate a kidney to a longtime friend. It had never been a question for me-I was registered as a donor and my family knew that if anything happened I wanted to help as many people as possible. Donating was always a goal (as odd as that may sound) and being told I could never help others in this way was heartbreaking. I was told to find another way to help, so I as now part of research.

I am forever awed by the generous people who donate in any and every way. Thank you to them!!

[harleydavidson]

I am also on the organ donation list and now I know this, I feel like a failure. Must be having an off day! Mel x

[jillydabrat]

Thank you for bringing this up, really didn't think about it before I saw your post. Will have to remove my details from the register and tell my family. Such a shame we won't be helping anyone when our time comes. As mentioned earlier, I am sure God will know I was willing xx

[Helen1952]

What a lovely lot of people you are to be on the register in the first place .

My son and both of his children were born with heart disease ( not genetic not hereditary just millions to one of bad luck ) and I belong to a support group where lots of young adults and children will need a transplant and it is very hard to get healthy people to join the register .

So I would like to thank you all for even thinking about Live Life Give Life as it shows such compassion .

Yes we have to come off the register but in a way this is a good thought too as the people who need transplant need the best possible match .

Much love to you all for thinking of others .

Helen 💓 X

[PeterET]

I've carried a Donor Card (all organs) since they began in the early '80s. Really disappointed to have to remove my name from the website now.

Fully understand why we would not want to pass on any of our "defects" to recipients.

Just have to keep encouraging others to register

Peter

[Hidden]

Thank you for bringing this to my attention. I was diagnosed with ET last year. I am or sure I say, was a organ donor! . Such a good point to make. I will have to get that removed from records. Lyn

[katiewalsh]

I'm in the same boat having had donor on my drivers liscence for decades. Am so glad to know this so no one gets my bad organs. It is a shame though.

[gbeam]

I never even thought about there being issues regarding donating organs, only not being able to donate blood. Living in Wales we have the new system for organ donation and we have to opt out of we don't want to donate or can't. Thank you for this information kari

[Karol_Rua]

Ironic that I received a healthy liver 10 years ago next week when mine failed due a large thrombus caused by my ET. The fact that I now cannot be a donor is quite sad for me. In Ireland there is always a shortage of donor organs

Good to have this information, although it's not so nice news

[Kari1961]

To everyone who has taken the time to respond to my original question, thank you

It is sad that due to our MPN we can no longer donate our blood and organs. But we have to look on things positively.

I for one am happier knowing that I won't pass this mutation on to someone already seriously ill and in need. Can you imagine how it would feel for someone in desperate need of a transplant to be told...... Problem A was sorted by transplant, but now you have an MPN

I also look on it in another way...... OK, life is not a bed of roses for us with an MPN ~ some days we feel like Cr@p but for the majority of us, for the majority of time we live 'normal' lives ~ if normal includes regular 4 weekly blood tests, venesections and medication :/

We have to be grateful and thankful that our condition is monitored regularly, that there are fantastic specialists in the field researching on our behalf everyday and that there are many thousands of people on blood and organ donation registers worldwide to help those in need.

I may not be able to donate, but it's not going to stop me raising awareness for the organ donation cause.

[MarkD6701]

Like many other medical problems, MPNs can go undetected for a long period of time before symptoms appear. It makes you wonder how many people give infected blood despite being completely unaware of their situation.

[Shelly1960]

What I have done is update the organ donors to my condition as said they can have any part of me if they wish so left the decision to the medics at the time and family etc aware of my condition 

[Borage]

I suppose as we can't donate organs we should consider donating something in our will to MPN research.