I tried to write this twice but keep losing my connection. Firstly may I say a huge thank you truly from my heart. The amount of support and love I have felt this day is indescribable. Thank you all xxxx
Sadly I am back home... when they retrieved the liver which was perfect I may add no disease, no fatty, no cancer !! It had my name on already I was thrilled and had previously had all my tests all done all ok. (Good job they were not testing my head as this was like rice pudding) I regress. The liver looked great aside from being twice the size it should have been and was just too big for me.. I did ask them if they could cut in half but they looked at me quite strangely LOL.. So just walked through the door back home now. Feeling like I have lost something ... But we live to fight another day - yet another TACE on the 6th December.
The really great news is it has gone to someone else who needed it too xx
So once again to every single one of you who replied and boosted me this day. I thank you. It was an experience a bit like a white knuckle ride, but valuable none the less.
I had my transplant just over a year ago, I was called as reserve and I got the liver due to its size as it was too large for the other recipient. I hope you get another call soon.
Ha ha, dear Alf, so nice to hear from you, it was a bit of a white knuckle ride and Richard kept me giggling all day. In fact there were truly so many folks out there just kept me boosted and helped take the fear and the anxiety away.
I have taken a few things out of the bag LOL because it was at the least a huge learning curve yesterday.
I was not going on holiday and did not need a change of clothes nor did I need 3 lots of nightwear and books to read... my iPad and my other general bits. Now it is packed again just a few over night things. I came home with an amazing sense of loss, quite funny really then I pulled myself together and cracked on.
Hope you are OK? I thought of you, and indeed everyone on this site, quite often yesterday with so much gratitude.
Hi Jaycee. Glad you are keeping upbeat. It's a funny thing about the packed bag. The only time we normally pack a bag is for leisure activities so it's hard to be minimalistic when packing for a hospital stay. I think the only thing I used out of my bag in the first week were my toiletries and my slippers and of course my phone. I was in hospital gowns for at least a week, I think even longer!.................. It must have been very disheartening for you yesterday but as I say, I'm sure you'll be getting your next call before too long. I am getting stronger now and I'm sure my spinal fractures are starting to heal. I actually went 22 hours between pain killing meds yesterday. I had to take some at 3am but I haven't had any more today yet. It's now become more a discomfort than a pain so that's great!. We (wife and I) are off on our first break for nearly 5 years. Going on Friday to a cosy cottage on the Yorkshire coast. Going to chill out, have the occasional amble and just enjoy having no medical appointments for a week. This is the break that I have dreamed about many times in the last few years but never thought that it would ever happen for me again and then came the chance of assessment for tp (and I was told I only stood a 30% chance of getting on the tp list) and here I am going on hol and excited as a child in a sweet shop!! lol. This will be you soon WHOOOOOOOP!!!!! Alf
Hi there dear Alfred, I am so excited for you that you are going on holiday for a while. I hope you have a wonderful time. Yes I am giggling again at the thought of you boys in a hospital gown. Not just the boys I may add. I had mine on only yesterday, truly they are awful. Mine had a tie missing round the back and my rear end was open for all to see.. LOL. Not to mention this all the rage fashion statement of 2018 they have going on the operation pants!!! Well they are something else again, dont get me started and the peep hole socks that cut your circulation off at the knee.. LOL.
On a more serious note how happy I am that your pain has moved on a level that is great news truly awesome. You know I thought today would be awful but it turns out it is a great day... a alfredthegreat day!
Long may it continue, may each day become less and less painful and you will be out ambling in the countryside of Yorkshire - pain free and happy... I went to Hebden Bridge around 8 months ago it was very pretty.
Hi Jaycee. I just had a vision of a police identity parade with everyone in the line up wearing hospital gowns and those peep toe tight socks. Can't really think why that came to mind but it got me chuckling. I could imagine that being in a Two Ronnie's sketch, lol. Thank you, as always, for your very kind words. I hope that you are post transplant very soon and planning your next holiday. I am going to try and do a fair bit of ambling at sedentary pace whilst away to try to get some leg strength back. Feel so privileged to have this new beginning. I don't think i'll be returning looking like the Incredible Hulk but hopefully my walks will make a bit of difference. Hope by the time I return that you have had 'that call'. Keeping fingers crossed for you. Keep smiling. Alf
Ah Alfred, so kind thank you. Yes, you had me giggling away with the thought of the lineup, LOL. It is true everyone in my house thinks I am going nuts, giggling all the time... One of my friends said, I thought you would be upset, but all feeling's like that are somewhat superseded by all my friends on this site. We are all so lucky and privileged to be given another chance at life. I get excited each day now, at the thought and privilege of my new rebirth xx
Alf have the best time. I will be thinking of you. Stay well, stay happy, no hand gliding off the tops of any hills, and no skateboarding down them either. A nice little amble will be just good enough right now. I cannot bear to imagine you all green with biceps the size of a tank... just stay as you are my friend. You will be grand.
Hi Jaycee. Thank you. Car packed. Snorkling gear, roller boots and bucket and spade in, lol. Catch up soon. Hoping for good news from you when I get back. Biggest best wishes, Alf
Hi Poo, This was a month ago! lol. This was when I fell in the shower at the holiday cottage and got my 3rd fracture. Alf
Well, now your home, hubby can put his feet up and put those marigold gloves back in the cupboard ready for another day. Some things just aren't meant to be I guess. Still, at least you get to go through this all over again. If that liver was too big, how small are you then Jaycee? Are we talking leprechaun size here? If so, I understand why poor hubby has to do all the washing-up. You most likely can't reach the sink. Poor fella.
in reply to
Ha ha there you go again giving me a fit of the giggles. No way do those marigolds go back in the cupboard, we have had this arrangement for year. At least 20 years now, before that I did most everything. Then we went to live in Cyprus and did role reversal he stayed at home and I went out to work had my own business out there. So, he is trained to perfection now. So no feet up for him LOL.
I am not small, I am quite normal in size a tad overweight in truth, since they put me on a eat more diet... I am 5'3" and currently around 11.8 stones. It seemed the donor was my size and weight. Which was why I guess I was told it was almost sure to go ahead.... change into a gown, had the meds, only when the surgeons saw it, they said it was way too big. It was huge, apparently much bigger than they expected.
So off home I went and a new donor was found.
The hospital phoned me later to make sure I was OK. It was the liver coordinator Michael, which I truly thought was so thoughtful of him. He said they found someone and they were in theatre . That they were all sorry it did not happen which I also thought really touching.
So here I am back ready to fight on. I am off for my pre-op meeting at the hospital today in readiness for my TACE on the 6th.
So once again thank you so much for yesterday, all my giggling, my husband said what are you laughing at? I had to tell him between giggles... seriously, thank you.
All you guys out there are truly amazing... They keep asking me do I need to see anyone like a cancer group or something. I have all I need now with you guys, I can get through anything.
Hi Jaycee, had my TP 2 years ago. Had a practice ambulance run too...got another call the next day!!
The new liver was 50% larger than my original one. They couldn’t close me & I had to have an open wound for 10 days so you probably didn’t want the oversized one!!
After reading this I am so glad they never used the huge one. I love all the stories on this site. All the things that so many have been through and indeed all the sufferings of those still going through all this... it is a hard ride.
All the same, this site is awesome, because of just how much it helps everyone. I cannot thank everyone enough.
You know when I first came onto this site I was in a very low place. The word terminal had been bandied around way too much for me and I was in a dark place.
I can tell you this in complete honesty people like you, and everyone here, are amazing to tell your story and help others is a gift to everyone. One which I am and will be forever grateful for.
Even after yesterday which was a bit like a white knuckle ride. I felt almost calm, you may say, or indeed at peace, sort of... anyway a whole lot better than I would have been without everyone. So thank you Dorset I am so grateful and I am indeed ready to rock again xx
Oh bless you. I read your first post after I read this one. So sorry for your disappointment but at least you know that the next call could come at any time.
Will do I promise Smyally, I think I would have felt so much worse if it was not for this site. Incredible truly remarkable... Thank you for your support Smyally.
Hi Mary would you believe my attitude comes from this site, I was really in a dark place when I first posted, I laugh now and can cry a little, not much it is not my thing not good at crying. Too much of a control freak LOL. I am more your crack on type of girl until I fall apart. I am more than ready for the next step, but learning all the time, about all sorts of things. (I love learning we are never too old to learn stuff especially, about ourselves) So my lessons are:-
1. Must try harder, not to be a control freak (This is my hardest)
2. it is not all about me, there are others on this ride with me - this was relatively easy, it is part of this awful journey to be a tad self obsessed and I was guilty)
3. Laugh more, live more, and take each day as it comes - (well this still comes under 1 for me me LOL... so still trying)
So bring those lessons on, each day on here, BLT, I hear others suffering, making it all the more important this site.
So it is not me that has a good attitude it is what I am learning from everyone here on this site.
On a personal level my head is like rice pudding most of the time.
Hopefully you will have a second chance VERY soon. We are all on your roller coaster with you, waiting on the end of your ride! Thank you so much for sharing yesterday with us all, we were and are still all rooting for you. Keep brave, another rainbow will arrive for you to look on the bright side of life.
Hi Jaycee, reading through your two posts has really highlighted the ethos of this forum......full of technical knowledge, as well as an immense amount of support for like minded people!! This really is a great forum. Fingers are crossed for you that you’ll get your next train ticket very soon.
Sorry it wasn’t to be. At least you got to the hosp ok. When I was in labour my hubby drove me and drove me to the bank not the hosp! We have our own business and I think he forgot what sort of thing we were getting out!
Ha ha Isabelle2, that is so funny, well when the cab arrived in London he was lost for a while then he took us to the back entrance where they were loading lorries and such. He wanted to leave us there with case. It was pitch black no one around and all doors locked. But I said can you go back around and I will walk there... Luckily I had been there before so knew the way in. I am still giggling here at your hubby going to the bank.. I understand I ran my own business for year right up until the start of this... so I am on his side really LOL it is easy to get confused. None the less, clearly he must have come too in time? What did you have?
Thank you Huggy7614, love the name by the way, in fact I love seeing all the user names, some tell a story I think some are funny and some have a special meaning. Love them, mine comes from the pirate films in particular johnny depp LOL..
It is a great place I would feel so lost without it.
Have a great day
Jaycee
I have been through the same, but have faith your turn will come.
You are being very strong, but allow yourself to go a little as well, its ok to feel let down.
Mine time did come and its really worth it
My thought are really with you, as know its hard time.
Good Luck
David
in reply to
Thank you David 5354, Trying to be strong is more the case, I just feel like I lost something LOL not quite sure what... it has in fact helped all of it, because I can see now that it may happen... So pleased yours came how long ago was it, and how long did you wait? I hope you are living life to the full !
I have worked all my life never had time off, so this is all new for me this not working anymore... but believe me, if I get a chance at re-birth, then look out world - here I come!
Have a great day David 5354.
Jaycee
in reply to
Hi
I had my transplant on the 18th of March, this will be the first Christmas I will be well.
I was the same had my own business worked long hours, but now volunteer, the process changed my view on life.
While I miss work, and will try and get some part time job, but hell I have taken on living life to the full a sports car and holidays have seen the savings gone !
Your time will come, I love you view on life.
Keep on going
David
in reply to
Thank you David, congratulations on this your first rebirth Christmas xx I just love it.
So what are you doing on your rebirth birthday 18/03/19 I do hope something really special.
I am considering telling the family that sadly they must dust off their wallets as hopefully I will have two birthdays a year. One being my re-birth day!!
I think that one is more special.
As you have come through the other side. Reborn anew.
I could just adopt the new one, but hey a woman can never have too many shoes LOL.
Seriously, not that shallow, but think the new date would be in your mind forever.
I may well volunteer for something. I think it is inevitable, your outlook changes on life with this and many other life/death struggles.
Soon money means nothing health and family are all you have.
I wish you so much joy this Christmas and pray the Lord continues to bless you and yours.
Have a good day.
Jaycee
in reply to
Thankyou!
You have put into words what I am struggling to come to terms with.
On the re birthday I am going to France for a three day break in a nice hotel, and shopping with my wife, a double win.
We are also visiting Walsingham a place we go to reflect, and give thanks.
I really hope to see your message that you are on your way again very Soon.
Happy Christmas
David
in reply to
David just announce it, two birthdays it is! Have a blast on holiday we must all love each day like our last, to the full, with joy and abandonment!
If I am blessed soon, I know I will LOL
Reflection in Walsingham Sounds pretty awesome too xx
France certainly is a double win. She will be delighted, shopping to boot every girls dream for a day out.
Happy Christmas my friend take care, stay well and happy
Much joy to you and yours.
jaycee
Not sure I have fully mastered the usage of this site folks, when replying they tend to go all over the place. So, if I am doing wrong please accept apologies... not the brightest bulb in the pack currently.
It will happen my first call resulted in waking up in ICU 12hours later having learned that with 15mins untill knife to skin it was called off as someone more urgent than me needed it but second call came 3 months later
We all have our stories along this journey and mine is one of them I just wanted you to know that many of us have been in your situation and we understand,good luck and as someone else said KEEP YOUR BAG PACKED😊
Sorry it didn't happen my husband had his transplant 12 weeks ago after 3 calls after the first one we thought oh well the wait begins again but 2 days later the second call, but that was not for him again, so back home by this time he was so tired as he was really I'll at the time we had only been home a few hours and they rang us again can you come back, So off we went again a long night waiting bit at 7.30 am they told us it was ok for him by 8 30 he was on his way for the op. And is now doing great he is a different person, he didn't have pain like some and recovering well. So keep hope, it could be sooner than you think good luck to you and your next call
Pauline xxx
Great news there Pauline, so pleased to hear hubby is doing grand xxx
I am ready no matter what. So many fabulous stories here so honoured to know each and everyone of you. Thank you.
So sorry it didn't work out this time, Blackpearl! But it at least sounds from the other posts like you might get another call soon. I have to be honest, I probably would've asked the doctors about cutting it in half, too! After all, I know partial-liver transplants are a thing--isn't that how it works? 😜😂
I live in hope Fuzzywashe, live in hope. It was the look on his face like I had said something wrong, because I laughed he laughed, but like you I thought they could do that, but I needed a whole liver. Maybe that makes a difference. I am ashamed to say I do not really know enough about it.
Sorry about that. Can I ask you how far you had to travel to the hospital. I live in west Cornwall and it usually takes about 5 hours to London, our nearest transplant hospital. I’m thinking I’ll be too far away.
Hi Julie, I travelled 2.5 hours I am in Bournemouth. What did the Royal Free say? It is hard on you I know but if they are happy to send a car for you when you get the call. See my positivity there not if but when. LOL
Normally during transplant assessment or listing procedure they go into how you would travel. In our case we are 100+ miles of winding roads to Edinburgh from SW Scotland and it was agreed that hubby would be blue lighted by ambulance if his call came or even potentially air ambulanced (and I would follow on as there is no way I would be safe to drive him whilst panicking and thinking ahead to procedure etc. We even had our caravan sited on the outskirts of Edinburgh so I & our cat would have somewhere to stay for the duration).
If you get listed Julie this will be a question to ask - you will not be too far away......... we had a poster on here who was from Shetland and still got to Edinburgh for transplant when his call came.
No, they will get you to hospital, there is no way that everyone waiting could be expected to move close to their transplant centre. Your call will often come many hours before the donor actually passes and the procedure of obtaining the donor organ commences - they want to make sure you are fit enough first and you almost go through another mini assessment before the liver is even received at your transplant centre.
Don't panic stuff like this at this stage, it will be discussed if you get to transplant assessment and listing stage.
When I went in with hubby, I had him all organized , I went with him carrying my handbag with my purse and a comb. Ended up being there 5 nights, and had to go and buy changes of clothes. Be worth preparing a few things for Richard. You must be top of list, so wishing your call to come soon.
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Hepatologist called my liver 'recompensated'
Calling any carers or partners?
My first call from Kings College Hospital 
Waiting call from GP 
