"It's only bits mum"

[LauraMk30]

Hope it's ok to post this,

My Organ Donation Card came through the post last week.

I'm now officially An Organ Donor. & I am very very happy with my decision.

So this evening I had " The Talk " with my family.

I guess it's not everyone's cup of a tea for a Wednesday night , but you never know what's around the corner, I know it's depressing & not something to worry about at my age, but when your poorly you have to think ahead, I'm planning for a new great start to my life when I'm better & I'm also preparing for my end. I feel better now that I have discussed this with my family as they were not aware of what I wanted when I die. So despite it being upsetting I feel so much better knowing that my wishes will come true & I will be leaving this world complete.

I know everyone has to do a will at some point, I've not thought of it till today so at the weekend my dads gunna show me the ropes of how to make one, & then at least I can feel comforted knowing that I will have the send off I want & deserve.

It's inevitable..

My mum was a little sad.. & obviously she doesn't want to think about it but I'm 30 & I'm a mother of a 13 year old boy who will one day want to talk to me about his wishes. It's difficult but I'm glad I could confide in them all. "There just bits mum", I said, they may not have worked for me, but if they work for someone else, it will be a perfect match & apart of me will go on living in someone else.. how nice ?!

if I can give someone a chance to live a healthy long life with pieces of me, what a blessing that is, It's a priceless gift & I'm happy that my bits will be given to those who really need it & will appreciate them. I've always been a giving person in life, & I will also want to give after I'm gone.

I did make a joke to lighten up the mood " if you don't respect my wishes I'll come back & haunt you" not the friendly Casper type either., Ha!

There faces 👻😱 so funny!

I can go to sleep tonight with a grateful heart. My parents are such wonderful loving people. I owe them my life. As much as I complain about my family my mum & dad have been my rock throughout my entire life. & even more when I became so ill.

They too discussed there wishes with me, they didn't know when it would be the "right time" to tell me, gosh I cried so hard & now I can understand how hard it was for them to hear my wishes. for some unknown reason tonight's talk has bought us that little bit closer.

There proud of me... that was such a surprise.. I'm proud of myself too.

I don't hear those words very often, & it's so nice & so comforting.

💖🌸

[LaurenW]

Discussions like that also bring the reality of your situation home to loved ones sometimes. It is good to cut through their illusions of you and help them to realize that you are taking your reality seriously.

[LauraMk30 in reply to LaurenW]

So So true Lauren,

Your so good with words !! 🌺

[Hidden]

Laura, you should be aware that it's difficult to be an organ donor with a Vasculitis diagnosis partly due to the medication we take.

Giving blood is not possible either.

[LauraMk30 in reply to Hidden]

Hey Keyes,

I was gunna write that in the post, but just waited for a response to put it forward.

I did put my organs down for medical science experimentation/ too if they are too damaged to donate.

X

[ludo]

Talking about your wishes after death is a brave and difficult thing to do Laura. Well done. I work in palliative care and it's even more difficult to discuss any wishes by then. Not just organ donation but funeral wishes, finances etc. There is a booklet which guides you through your wishes and gives prompts of things you might not have thought off. These should be available in doctors surgeries on their leaflet shelf.

Anyone of any age in good health or not, should let loved ones know their wishes after death. None of us know what's around the corner. But it is a difficult subject to broach and writing it down and placing it where it can be found will help the family enormously if your unable to discuss it.

Hope by now you have some appointments for your scans and procedures.

Look forward to hearing how you get on.

Best wishes x

[LauraMk30 in reply to ludo]

It is Ludo, aww thanks so much, normally fathers & daughters have "the talk" of planning out engagement party's & weddings , I haven't had the opportunity as of yet.. even though my boyfriend hinted a few times when I got home last night. 🤗 which was lovely yay! So planning my funeral instead was a tearful talk.

I thought it was a good time to be an open book. Since becoming so ill, I've thought about the inevitable but never said it out loud.

My mum bless her thought that vasculitis wasn't that bad & it could be cured with with a range of antibiotics.. umm denial! Bless. Told her to look up on google !

My dad on the other hand has paddled with me through the rough stormy sea, & knows a lot more now & how serious things can become.

He knows I don't like to beat around the bush, brutal truth is all I want to hear. I don't like sugar coating things.

Thanks I will look for the leaflet Ludo, as I want to know my options etc.

I've recently inquired about a horse drawn carriage for my funeral, (going out in style) I'm also going to pre pay my own funeral so no one has to worry about the cost, I want to be cremated. I've also emailed a company called heavenlystars

I want my ashes in a firework display. I love anything that sparkles, my nickname is ⭐️sparkle Soul⭐️ after all

They do a personal show for your wake & it's totally amazing! Everyone knows me for my love of the sky stars & moon. So I want nothing else to be up there with them.

I'll definitely be going out with a bang 🤞🏻🎆🎇🌠

P.s I've had no appointments through yet but fingers crossed I'll have some soon x

[Hidden]

Thank you for this. However, I have been told that because I have an autoimmune disease such as GPA, I cannot be considered an organ donor and that I should state on a donor card or similar that I am ANCA-positive. I have discussed this with several doctors and they all told me, no, better not, too risky.

This is in Germany, I wonder what has been your experience in the UK?

[LauraMk30 in reply to Hidden]

Hey MrsCarroll,

Thank you for getting in touch,

I have briefly discussed it with my doctor, I have yet to talk about it in great detail once I have a firm diagnosis. I'm still awaiting diagnostic tests for suspected GPA.

I am also ANCA - Positive

Despite having possible vasculitis it did say that not all medical conditions can stop you from donating.

When you die a doctor or trained nurse from the organ donation organisation will be present & will ask if my organs are ok to donate. If not I have signed them over for medical research to be used for experimental purposes university's/labs. Etc

[AMG38]

Really touched by your post. God bless you as you think of others.

[LauraMk30 in reply to AMG38]

Hey Annegriffiths

😢 thank you that's so nice of you xx

There's not a day that goes by that I don't think about others.

I was born to give. ❤️

[Greenkit]

I have gone a step further and have signed up to donate my whole body to medical research if i am able. (They can only take it at certain times) I will then be called a cadaver by the students.

I have told my family i dont want to waste money on a funeral when research on my body may do good for someone the next year or even in 20 years time. I want them to use the money for a good old knees & booze up in my memory.

Once i am gone it is just a shell that is left behind, my spirit & memories will live on.

[LauraMk30 in reply to Greenkit]

Greenkit your a legend !

I Didn't realise that was possible.. but wow.. I have no words & that's not like me.

"Cadaver" ⭐️

That's so selfless, I think what you've said has moved me quite a lot, so thank you for sharing your wishes with me. I call it a vessel, your vessel/body will be used for the greater good, 20 years on you could be the reason for a cure or miracle.. that's a gift in itself.

"Good old knees & booze" absolutely adore that!

Of course, your so right there, I believe in that too. Your soul is forever more x

[cgarmstr]

I asked my consultant whether I should continue as an organ donor after my Vasculitis diagnosis. In the U.K. The first step in considering organs is to get release of the donor's complete medical records, so an informed decision can be made about whether to use them.