One year ago today I was given a very special gift by a kind family who made it possible for me to remain with my family and to be able to write this today. Baby steps are now adult steps, Bilirubin is now 8 down from 567! If I haven’t mentioned it before, I now know exactly what I had which was Ductopenic Hepatic Sarcodosis.
To everyone in our liver community, it is a long, hard, emotional and painful journey, keep going and never give up. ☀️
Written by
Flowergirl24
To view profiles and participate in discussions please or .
Well done Flowergirl, I see this is a rare condition you have. You've done really well, I realise it's been a very hard, emotional journey for you.
These liverversaries make for a very private and personal day. I always use this as a time of reflection, to look back upon my journey and of all those people who made it all happen.
Enjoy your day, it is after all a second birthday, it's a celebration of day you were reborn.
I'm having three birthday this year. 29th April was my birthday, the 1st Oct will be my 5th rebirthday, and on the 9th Oct, I'll be 25,000 days old. So much cake. xxx
Thank you Richard. Yes, the odds of what I had... I wish it was the lottery I’d won instead! From your advice snd others on here, it’s now time to write to the donor family now that first anniversary is here. It’s never the right time but I’m ready now.
As I’ve told my sons, I’m starting afresh so therefore I’m younger than them now. Congrats for 5 years rebirth xxx
Many thanks, That letter will be the hardest letter you'll ever have to write. Like you said, there isn't ever a right time to write it.
I wrote mine after about six months, and in hindsight I think it may have been too soon as no doubt emotions for the loss of the man who saved my life might have still been running high. I never did get a reply. But I understand this can often happen. I still have a copy of mine, I'll send you it via a PM as it may help you to find the right words.
Congratulations on your anniversary, a day of mixed emotions and a major step forward on your surreal journey. It is certainly a hard road to travel and here’s to celebrating many more ahead of you.
Thank you Mark. It was very much a surreal journey and as I progress, days and weeks go by where I forget I ever had the TP even when taking my daily tablets. The advice I was given after my surgery was that they wanted me to get back to normal living which is what I am doing to a degree.
Well done it's quite a journey 4 years for me still can't believe it you will continue to get stronger and never forget your doner enjoy your special day
Hi Flowergirl, congratulations! I'll be having my 2nd T/P anniversary next week. I was just starting to plan 'normal living' starting with a week's holiday to Croatia in June 2020 (if I was given the all clear to fly) when Covid-19 struck, so after a year self-isolating, having my 2 covid jabs I am hoping that maybe later in the year I can get that holiday. My poor hubby has been a rock the last 3 years, with numerous dashes to A&E prior to my transplant and all the trips to Edinburgh when I could not drive so would love to him to also get back to normal and have a well deserved holiday.
Congratulations!!!💞🦋You did it! I hope you take in everything today! This is a VERY special moment for you and your family. Only when you are ready - feel it inside should you write your letter 😊. I am now 4 yrs pt. I wrote my letter 4 months after and it was just very natural. I woke up that morning and I knew this was the day. I have not received a response. Which I understand can be difficult. But we all I believe we will get a response ❤️
Love this day!!! I wish you health for years to come 💗🌹
Thank you Hope. It’s an amazing journey. This first year had gone so fast. I’m sure the next ones will zoom ahead. Yes, I’m ready to write in time for my next appointment in June so I can hand my letter to the team to pass on, Have a lovely day! ☀️☀️☀️
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.