Introducing myself suffering with ALD

Hi all my name is Nisha and I'm waiting to here today if I will be on transplant list

I had the 3 day assessment last week and it went well. Just wanted to get in touch as I'm really scared. I'm 43yrs old.

[Hidden]

First of all may I welcome you to this site Nisha,

So, your hoping to join our band of merry people who have been given a second chance of life. Well, good on you, and congratulations on getting through the assessment phase.

The wait can be an anxious time, A lot of what your about to go through is nothing short of miraculousness. Apart from the medical and physical aspect your going to go through a pretty emotional time. This is quite normal so don't beat yourself up. Your life will change forever, you'll find that your life takes on new meaning, and you'll feel a bond with that donor even though you never knew them. Each time you get dressed each morning, you'll look at that operation scar, and think about that donor. At Christmas time and on birthdays and anniversaries that donor will be in your thoughts.

Writing that letter to the donors family is the hardest letter you'll ever have to write, but if you do decide to write one, you'll be glad you did.

I'm not trying to put you off, far from it. Once this is done and you've had your transplant and you on the mend. Grasp this second chance of life with both hands, go out and embarrass life. Fill your heart with love and goodness, and go out there and really enjoy it.

This is also a time for drawing a line in the sand, forget about the past and of all the bad things that have happened, look to the future. I guess in your case, your son's going to be so grateful of that donor too.

Good Luck Nisha, try not to be scared, your in safe hands.

Best wishes

Richard.

[vulnerable]

Where did you have the 3day assessment and can you tell me what it involves? I hope you’ve heard good news by nowxx

[Hidden in reply to vulnerable]

Hi I had the asessment at Addenbrook Hospital. Not scary at all. Very well looked after. I got the call yesterday to say I'm on the transplant list so now it's the waiting game.....scary. However I know this is the right way forward.

[vulnerable]

Thankyou Midha I’m delighted you master it onto the list. Now a. Waiting game but for a new healthy life.

[Isabelle2]

Hi Nisha

I had a transplant 9.5 months ago. It has changed my life. I am back working part time. I am doing sport, and from this week I will be volunteering a day a week at a food bank.

The loveliest thing about having had the transplant is spending time with my kids. Grown up and away at uni I love when they come home, cuddles on the sofa, cooking together, just being together. I nearly lost that.

As for post operation I didn’t really experience any pain. It took me a while to get up and move but once I did everything was fine. Also I remember getting my appetite back took some time. It’s a big operation so you need to take your time getting over it but it is so, so worth it.

Good luck

Helen

[Hidden in reply to Isabelle2]

Thank you so much for the inspiration. I'm so happy to here you have done so well. X