First, thanks everyone for your post remaks and kind messages.
I'm so so very great full for this forum and the community of amazing souls on here.
The surgery went great! I think? Lol. I was released yesterday afternoon.
I had a drain Tuesday to prep, and then Wednesday morning I went into theatre at Addenbrookes. I've been there so much, and knew almost all of the team, including one of the doctors. So there were hugs and laughing, chatting, etc.
Surgery was about 2.5 hours or so.
The next day the sonogram read that the shunt was all clear and no new fluid in any of the cavaties thus far. No confusion. (At least, I don't think there is any? Lolol)
I was told around 11% of patients had ascites post transplant. I was also told that what I have, this type of portal hypertension in a liver post transplant is so rare, they have only seen one other case in over a decade, and it did not even have a name for it! Wow! Leave it to me to be the girl with the really cool rare liver problem! I feel like a rockstar! I mean, as far as livers go! Ha! My portal hypertension is caused by the small tributary veins throughout my liver having blockages from blood clots occurring.
In many cases it is from there being varying pressures between the hepatic and portal veins in the liver. Although I have some of that also, it is not causing the blood clots. My hepatic pressure prior to surgery was 31. After surgery it dropped to 21.
Anyway, if I don't rely to all my messages, please forgive me. I'm still just getting settled..
I will say this..so far, I feel pretty good. I don't know if it's magical thinking because there's no way to see results this fast, but, the ascites has been the Bain of my existence for a few years now. It's been so bad, so painful and so tiring..that right now, having no fluid and not feeling like it's coming on in any way is just great!
This whole quality of life thing is a pretty big deal. I'm just so tired of being tired, and feeling wretched. So I am hoping, against all odds, that this shunt will work!
So I can have a life, until the next turn.
Love all of you, and thankful, so thankful for being able to come here and talk about all the things I can't talk about anywhere else.
Cheering all of you on!
xxxxxxxxx
Your American Pickle!
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Maybe we should have rung the hospital and demanded regular news updates. um, sorry about the pickles by the way it seems you may be stuck with it! anne xx
so good to hear your on the mend ,,,,i nearly had a tipps to help with fluid swelling but this never happened ,,they said due to HE but i dont think i have that im quite switched on and savvy ,,and i have my swelling under control,,yes there are times when it just has a mind of its own and ill book a day for a drain and chillax ...seeing my Hepatologist 7th nov ,,,,my livers bad but stable ,,he mentioned a trans so im going to push for one ,,but there is a tonne of tests before this MELD etc ,,anyway lots love Matt
You truly are a rockstar little Pickle....in more ways than one can count❤️ U r an inspiration,a shining Star and above all an angle with wings that won't stop😘
Thank you Kimberly.... I will be in touch... I have someone flying in from Bangledesh to live with me tomorrow so I am on very little sleep! I just have a connection with you and not sure where to start...
I live in LaJolla CA and wonder where your children live??! xxx
Dearest Kimberly iam really happy for You, i am sure You will be very good and as You said it will seem as magic, send You my best wishes for your full recovery, lots of Sun and hugs from México. : )
It does feel good. Mostly just having hope feels good..it's amazing isn't it? Mind over matter! Such a powerful thing. My life really is entirely based on how I choose to see it. And without fail, if I choose to see things in a healthy and hopeful light, then no matter what life throws at me, I can handle it.
My preconceptions... But that can be so hard sometimes, you know? When your pain is real and just walking to the kitchen is a strain.
I really struggle with this some days..but all I can do is keep trying.
It's progress, not perfection! Lolol. Thank goodness for that!
Awww thank you! I'm going to go through and see what I've missed thus far, this past week!
Hope your doing well also?
By the way..there's a smallish forest area near my home in the next village, and every year all these lovely bluebells pop up on the forest floor..it's the loveliest thing..the way they are set there beneath the trees in this opening? It's one of my favorite things! Did I even mention that to you?
But whenever I see your name in a post or reply, it takes me right there!,
Hugs!
xxx
Glad to hear that things have gone well. I really that this continues- sounds like life has been less than fun for a while, so good luck with the new you (if you see what I mean!)
Not to bad I just feel tired constantly.I went for a ct scan two weeks ago .now they want a mri scan witch is next week so we'll see how it go's but until then am just trying to keep busy and not worry about the results .but am happy and take one day at a time.xxxx
Glad the surgery went well. I also have portal hypertension. They don't why I have it even though I had a biopsy done last year. My ascites is clear but I am taking carvedilol, a beta blocker for it. Started taken it while I was going through Chemo. I remember feeling much better when I had 3 litres drained from the tummy.
Hi there! Yep, it's amazing how just 3 liters can make a difference, isn't it? I think because it's not just the weight..it's what comes with it!nthecexhaustion, any pain from pushing the organs out of place..if your smaller frame, three liters is a lot.
I've had 12 liters each time basically the last three times draining. Prior to transplant I could go as high as 21. Ugh!
I don't really know anything about cancer. But I'd imagine cancer in the liver to be absolutely devastating! How are you doing with everything now? Are you still getting chemo and under care?
Hi Kim, Actually I am doing ok. Had stage 3 Ovarian cancer after having a an abdominal hysteretomy. I finished my Chemo back in May but still feel wiped out. Have aches in muscles and just try and do gardening and gentle exercises. I have some cirrhosis of the liver but is not alcohol related. I wish I knew what caused this, but it can happen to 10 percent of the population. Will probably have to have another endoscopy to see how the varices are doing. They found some tiny ones last year and that is why I am taking carvedilol.
Got my fingers crossed that the surgery helps and it gives you back your energy. You are always so up beat and happy on your posts and replies to everyone's posts and that's always lovely to read.
Hi there and thank you so much! I do try and be upbeat..sometimes I try and trick myself that I'm doing great! Once and a while it even works! Lololol.
But I am feeling better!
Just overly tired today?
Not sure why..still recovering from Wednesday I think!
Hello there our pickles! Been wondering how you have been getting along this last week, I was going to message you privately ( finally learnt how, cazer taught me. she got me in terrible trouble you know ........ uh, well that,s my story and I,m sticking to it!.....) Anyway, I expect quite a few folk are wondering how things have been going with you pain wise ect. I know how much you.ve been dreading that wretched asites rearing it,s ugly head again. so hope for positive news on that front. I worry about you so much, nobody deserves a break more than you kim. Havent thanked you yet for the moo kaite suggestion. found a great crystal site, sent for the crystals and knocked up a pendant and a chip bracelet. The last time I was at the hospital I resembled a Christmas tree (rowan berry neckless, magnates, crystals ect ). I left having been relieved of my crystal chip bracelet by the lady drawing my blood, who wants two more for her daughters, so it seems you,ve accidently started up something in Kent! Anyway pickles, when you have time let us know how things are going. Thinking of you Kim and keeping everything crossed. Love anne xx
All went well. Alas, my messages are piling up, and I'm really not answering a lot..I feel bad, but I've been ill. It turns out the surgery has given me HE. At the lower end of the scale it causes extreme tiredness and a bit of depression. I have dreaded getting HE ever since I was diagnosed with liver disease and ascites. Its hard to believe I went over three years and so many drains and I did not get it. Then I gets this shunt for quality of life and I get HE. lol.
I have to laugh..I mean I HAD to get it..right?
Anyhoo. The good news is that it is at the lesser end of scale and they are giving me some new antibiotics, strictly for the gut. It seems to be working. I've been on it five days and Im feeling better, less tired..so we will see. Anyway.
Ill be on when I can, or actually feel like Im up to it. Sorry to worry anyone! I had written a post when I first got home..you must have missed it.
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First Post from a "Noob"
What are signs of hepatic encephalopathy and when should I get help
If varices have been reduced to grade I hardly visible when inflated anyone know of same please?
Cirrhosis LFTs came back as normal but still worried
Jacqui
