After a month of waiting and having a HE nearly every seven days or so, then recovering time with vomiting shaking, sleeping on and on, I finally saw one of my favorite specialists at clinic.
We spoke to her about everything. I cried a lot.
It's been just over four months since we got the diagnosis about the new liver failing mechanically and having the shunt done. Still, I had hoped to get more time before going back to be processed.
So in December I will go back into Addenbrookes for the three day work up. To make sure I'm able to, and healthyenough to go back onto the list. I just hope I am. I got lucky the first time around with my blood type..A-.
So, tillycindy and pear-shaped . And my other pals..that is the update.
It's all still sinking in, but as I said, I knew it was coming..I just had hoped it would take longer. I'm on the best meds for the HE. They did up my dose of lactulose and added another one. So I hope that helps.
Love and gratitude to all of you out there still fighting the good fight!
xoxoxoxoxo
Kimberly
Aka your American pickle
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dckimberly
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Hi DCKimberly, so sorry that your new liver is not working; i can only imagine what you have been going through and now this. wishing you all the best and hope things go well at Addenbrookes. xx
Hi dckimberly I don't know you really well but I am sending you all my best wishes to you and hope that everything goes smoothly for you at addenbrookes. God one transplant is more than enough for anyone!!, never mind having to go through it all again. You are a trooper miss, and I take my hat off to you. Ian x
I agree that it is a game of luck. BUT in the couple of years I've been on this site I've not heard of anyone getting on the list and not getting a liver at some point. I think they say around the 10 -20% of people on the list die before transplant. We are all fair warned of this, but I suspect that many of these patients die from other complications before transplant. I think you have everything to be positive about, I really do.
Another thing they don't warn you about is complications AFTER the Ltx.
Like night sweats, diabetes, poorer eyesight etc.
I know that the mortality rate goes up with each transplant also, so there's that.
But your right, often people just get very ill, and pass that way. Not necessarily from being on the list, but whatever brought them into hospital to begin with. People often wait, not wanting to complain or thinking it has to do with age, etc.
my tx coordinator told me that they are doing transplants today that they never would have never done 15 years ago. There is such a high need for livers. He said often you might get an organ just to help you stay alive until the right one comes along. Last month it was a year anniversary. I would have died if they had not transplanted me. I'll always be grateful for This first liver..no matter what. I wish I had more time with it!
My 2nd Anniversary tomorrow. I think I'll "celebrate" that by writing another letter to the donors family. It's quite a cathartic procedure. It seems so long ago now that it's easy to forget, but writing that letter will force me to reflect on the last couple of years. Just seeing my kids grow 2 years older is more than enough for me to understand the gift I was given.
I'm on a roll now so I'll tell you something that happened to me when I had my transplant. I was in Kings hospital in London. My brother works in the city and travels to London once or twice a week. The day I went for my transplant my brother went to London to. When he got to work he was told that one of his colleagues had been killed in a car accident, and that this amazing woman had given heart, lungs, liver etc for transplant.
Since my brother told me that story we haven't really mentioned it again I think because it's not something I like to dwell on. But I wonder if this woman was my angel?
You must be exhausted (mentally and physically). Keep going, I know the stress of getting on the list but I think you've probably got every chance of getting on it, and from your condition you might get a quick turn around.
It just doesn't seem possible it can go wrong again second time round.
so sorry to hear this news, im praying that you get back on the list. its heartbreaking what your going through, all the love in the world, god bless you and help you, grace xoxo🙏❤️
Hi there!! I miss you..you are, as ever, my liver partner in crime!
Yes..the ascites did not go away..it was getting worse. They discovered i have a rare form of portal hypertension in my new liver..so all the little vessels are blocking up. Then they gave me the shunt, but now I have hepatic encholopathy. Which is from the build up of toxins that are no longer being flushed out by the liver.
They warned me that my new liver was going to fail 'mechanically' within 2 years at that point..That was 4 months ago..now the HE is getting worse, so its time to get assessed again for transplant..
its been a long and bumpy ride!
But how are YOU? How is the Hep C? Still all clear I hope. I see Tracy every so often when I am at the clinic!
Thanks sweets! I am taking everything I should be!
They just added another laxative yesterday on top of the other. I am already on those antibiotics, to try and kill the gut toxins. But it's gotten worse..I'm hoping now for a few good days to wrap gifts etc.ecause I'll be in hospital at some point in December and everything has to go across the pond! Lol
Bless you I hope you are okay and looking after yourself,I know Tony will be there for you and your family.You will get better they will fix you proper this time at Addenbrookes and you'll beat this.
You will be well enough to wrap your gifts up too this Xmas,I'll be wishing you a brand new healthy liver this time around.
Identifying with sleeping !!!are you still struggling to get to sleep at night but then when you do go off you go stay there for hours ?or is it night and day?
Sorry still asking yoi questions.hoping somerset recharged you mentally for enslaught .xx
I'm creating three books with windows in them for the holidays. I'm an artist..that is the one thing getting sick did for me. I had sold my company when I got sober & was attending university in the USA. I was getting my doctorate in anthropology..something I love.
But as a child and teenager, art was my whole life.
I walked away from it at 17, when the drinking really began taking over.
I was doing a bit of advertising art and my partner noticed how happy it made me. Suddenly he was buying me all kinds of paper, pencils, markers, just everything.i began by designing a 9inch tall house made entirely out of paper..in 3D. Then I stated selling the designs to a company in the US and the U.K.
It's funny, huh? That it took me getting sick..35 years later to pursue my childhood passion...
I would encourage others to do the same! It's been so fulfilling!
Forgive long reply!
exes and ohs and lots of cheers!
Kimberly
Ps. I'll post a picture when they are done!
Hi Kimberly,
Wishing you lots of luck for your appointment at Addenbrookes, your positivity is a huge asset to this forum,
I cannot gush on enough about what this forum has done for me!
All the info, support, new friends...
It's easy with an illness to feel utterly alone. When I found this forum I got all of the above, in spades. I'm ever so grateful for the people here and the staff that closely, yet not obviously so, monitor the boards for all of us.
The information packets available for download have also been of great use to myself & my partner. We often find the answers to our questions in the information, when not easy to understand our doctors.
I don't know who puts those together, but they should be commended. I find that the better informed a patient is, the better I feel, and I feel empowered, not like a victim to my own problems.
Thanks again for taking the time to post to me.
Please thank the whole team over there from me to you!
A friend had his third transplant and is doing well. So second time lucky for you I hope. Thanks for sharing your ups and downs as I like to be as well informed for all the scenarios That can occur after tranplant. Week four of my husband being on the list so I imagine we got a long way to go. X
Thanks for posting buttercup. It,s Pear that does the nagging not moi !. You know It,s cuz we care. so perhaps pickles may be missing from all our tables this Christmas. I don,t suppose you know yet when abouts in December?. Hope so much that you get to spend it at home with Tony and family. Still we all know how you try to make the best of a rum situation, I,ve heard Hospitals can be quite a laugh around Christmas. Don,t quite know whether to be pleased and congratulate you or not, if you understand. As Pear once said going for being re listed must be daunting in one aspect but gosh kim, if you do and all goes well this time, wow, watch out world!. Things will eventually turn out fine for you, of that I am sure. Please let us know how you are. Much love anne.
No clue when in December..I just know it will be then. I'm wrapping gifts early. I told the children yesterday. I just hate giving them the news. But yes. I'll spend the holidays with Tony, his mum and dad.
Watch out world is right! Lol. I'm a fully engaged kind of person to begin with!
Hi Kimberley . So sorry to hear things have gone pear shaped , your such a strong lady and I really hope that things get better for you , I am praying that you get a new transplant soon . Sending you my best wishes Hun .. Regards Linda xx
Good to hear from you , I was thinking about you yesterday when we were out walking 😊 Hope your assessment goes well Kimberly, all good at this end , much love xx
Hoping your enjoying the walking during what we in the USA call the Fall Color Show. I'm from the DC/Baltimore area and I love how the trees on the mountains look like they are on fire! It's amazing!
Had my follow up yesterday and met someone recovering from two transplants in the same week - he looked amazing for only 2 months post op. So you will be fine.
By the way my new liver seems to be working perfectly at seven months post op and as I said to the consultant, I'm now a perfectly well, fit man who happens to have a big scar. Next appointment not for another three months.
Congrats on you tx. I'm in the big backwards L scar club also! Lol
😀
Cheers!
Kimberly
Was only thinking the other day that I hadn't seen you post in a while and now I know why. So sorry that the 1st liver didn't work out, but along with everyone else, I really do hope that the 2nd works out to be a charm, as they say.It's good to hear that you are remaining so positive, especially with all the meds and HE to boot. All the very best to you and your contributions to this board have always been appreciated.
Hi ya I used to be on here under the sydonym of rickyrocket now I am urbanblanks but with my real name bri reason for change my account got hacked so that's just to let u know who I am I did talk on here a few times before any way this is just to say I hope all goes well for u and I know it's hard but positive thinking and all that I know u have been through a lot so good luck with it all and God bless ya love brixx
Hi Kimberly, i missed You and didnt know what happened to you, i think of You a lot and send You the very best thats what You deserved, i want to share with You my sad story, my husband passed away two weeks ago, he agreed to go to the Dr, maybe it was too late for him, he showed all the symtoms mentioned always; encephalopaty, edema on hes feet, and strange sleep patters, he was at the hospital for 4 days because he caughed a lot and had fever, de Dr told us he was ok, now we think that maybe the Dr told him something in private about he's condition, he went to work and looked normal 2 weeks put he lost lots of weight, he started again caughing and at night he got fever, hes hands Shaked and the new Dr prescribed lots of medicines, lactulose, antibiotics, diuretics, lots of things, i stayed with him most of the time and cooked hes meals, it was really sad because he forgots lots of things, after 48 hours he was much better, and then after a week, on sunday he looked really bad even though he didnt' want to go to the hospital, maybe he knew something will happen because he said goodby to our sons, we Took him to the hospital and he suffered a heart attack, hes lungs did not work, he couldt breath on hes own, they told us he had neumonia and hes kidneys failed.....he died at the ER and we stayed with him all the time, remembered i told You he didnt want me to be with him and he wants to walked out of our marriage, sadly he did. I am very lucky to find this group and specially You, You helped a lot, and part of what You told me I used it to convince him to stop the homeopathy and went to the Dr. It was too late but I tried until the last moment.
You always will have a friend in México and You are welcome when You can come and visit, i am sure You will find another chance, You deserved it, You have being an angel to me and will always be in my prayers. Wish You the very best,
hello my love! just seeing this..I am so sorry for your loss..but am glad he was getting help in the end. I am glad if anything I said might have helped..but I'll bet your determination was what REALLY made the difference! You were so strong.
And you will always have a friend here in the UK, should you ever come to visit.
I wish only good things for you and your sons, and wish your husband safe travels home. This is exactly why seeing a doctor is so important. As you've read above, I have the encholopathy also..it is draining and scary. Waking up, not knowing if its day or night, shaking, sick..but I'm glad you were there with him in the end. Remember the encholopathy would have changed his personality drastically..It has mine. Sometimes I am mean to my beloved..then I cry once I come around again and he tells me..I hate they he suffers because of my illness.
thinking of you and praying for you and your sons..
Be blessed and please write to me anytime..I will answer when I am able..
So sorry Kimberly. That must have been so hard to hear. Praying that you will be called in again soon and that the next transplant will be successful AMD you'll have a lovely long and healthy life.
Sorry been a bit AWOL. I lost my dad just over a month ago. Then other stuff going on....we Dont have it easy do we!
I'm so sorry for your loss..When I lost my dad over ten years now, it still hits me. I dream about him still and often. I am definitely a Daddy's girl. I am adopted and have another dad also..but I am not nearly as close to him.
I think I dream a lot about Daddy because he always made me feel safe..and being sick, well, I often don't feel safe.
hi Kimberly. I had 2 of them but both failed then i had my transplant. I hated having them done to be honest. They said it was unlucky to both fail but i was in cloud lah lah land and had no idea what was going on due to the toxins affecting my brain. When are you going back in? ☹ that sucks I'm sorry.
nods, yes, the toxins are crazy. I hate how sick I feel afterwards also, I sleep when I'm having a bad episode. Tony says its like I'm sleep walking..I will rock back and forth for a long time, eyes closed, till he makes me lay down. Then I'm scared when I come around..not sure what day it is..sighs, then it's the shaking and vomiting..ugh.
I go back in for my next transplant assessment next month..they have not said which days, so i am trying to wrap all my gifts etc right now. Because I have to send all my family gifts to the US.
I know how it feels. Slept for almost a year. Frightened my kids as id lash out not recognize anyone i kicked with my parents i put everyone through hell. I feel so bad now. I'm glad i don't remember a lot of things. I went to the bathroom one day and bled out everywhere. My son broke the door down n saved my life i had to have the whole of my blood replaced. I don't remember 😣. Anyway I'm keeping my eye on you now. No escape now.
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and I am A negative. So, not the worst, but certainly not the best either!
Going Back To Work 2 Years Post Transplant
I'm going crazy in losing my mind it's me in the little white box lyrics Jessie j
I'm going crazy.
