I was admitted last Friday for high creatin, I had been moving up in numbers, then jumped from 109 to 140 in a week, and my liver numbers jumped also.
I get told off for not drinking enough water. And told to come to Addenbrookes.
Sadly I have never been a big water fan, and I never have drank more than a liter of anything a day. Often I'll have a personal size bottle of Coke, and won't drink all of that in a day.
Since I've been in, numbers are better, but, 36 hours of IV fluid gave me a bout of ascites again, which I'm having drained this morning.
Last night they nearly separated me out from the herd, because my white cell count has dropped to 1.1. The average is 4. Anyway, I'd need to be .5 to warrent my own room. That's fine, either way.
But then they dropped my Adaport (imunos) from 4 mil. Twice a day to 2 mil! I have not been that low on those, ever, even after surgery, they start you, on average at 3 per. I'm guessing this is to try and raise the white count. They also mentioned a bone marrow biopsy after the new year, or soonish.
So many things going on in the last week.
I nearly had to have a liver biopsy, but they stopped that because my numbers are good again, as is my creatin, getting better, and an ultrasound showed no inflamation.
My transplant was October. 19th.
I really wanna go home. Except for some ascites, which THEY gave me, chuckles, I'm really feeling ok.
But, I am worried about this white cell thing. Has anyone else had to deal with this post transplant?
Thanks in advance!
And hugs to all who are not feeling so hot!
Cheering everyone on!
Kimberly
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No haven't had the low blood count. Coke is bad on its own. It won't hydrate you, if you're drinking such low amounts of liquid at least make it water.
When you say they gave you ascities, do you mean you were rehydrated by drip?
Yes you already answered my question about ascities. I had the same immediately post transplant. Everything swelled up, I thought it was because my kidneys weren't functioning properly?
I think your speaking about something different. I had massive asicites prior to transplant. They were draining me every ten days near the end, and would take, sometimes 19 or 21 liters of fluid from my belly. I had three drains post transplant. They said it might take a couple of months to completely stop. But it was so much better since I left the hospital. Then yes, after 36 hours of fluid in order to help flood my kidneys, much of it landed back in my belly, which is why they are coming to drain it this morning. I had the ascites for 3 and a half years before I got my new liver.
And yes, I'm aware Coke is not good for me. It's been a problem for me for a while. I'm working on it!
A wee bit worried. My bloodwork from this morning has my white cell count at naught .6. So it's dropped over night from the 1.1. It makes me giggle that I'm half a point away from getting my own room..lol. I feel fine! Really. I'm dressed with my makeup and hair done etc. shrugs. Oh well.. The consultant will be in soon. I'll know more then. Scotty, just a heads up,I'm not really going on Facebook, it's harder for me to do, for some reason from my iPad. I have the app, etc or could use Safari, but it's just bleh.
Ok, Thank you for letting me know but you know how to reach me,and can't believe you havn't got your own room yet lol,slacking these days the N.H.S. I tell you.
Do you have CMV? The meds for the virus is called valganciclovir and causes drop in white cell counts. My husband had to be put on a drip instead because of a dangerous drop.
I don't know what you think you're up to but you need to stop all this nonsense and leave that poor hospital alone....
.... and if you can't do that at least do your best to get better quickly I'll cross everything I have for you - pain be damned!!
On the white blood cell front - from what little I've read they're doing the right thing - immunosuppressives are the prime suspect so they reduce and check. It's not all that uncommon.
Keep your chin up. Hopefully you've got enough to keep you occupied while you're in there.
Giggles at you..I was hoping you'd reply..and I promise, I am being as good as I possibly can, and before you say it, lol..yessssssss, Mister X I'm playing nice with the other children and sharing my toys!
I am reading quite a bit, shopping downstairs in they're various shops! And I rented the TV with movies also. £40.00 for one week! Talk about getting taken for a ride!
Today, they said it was possible the imunos, the Adaports might also be affecting my kidney counts? Actually that makes sense..because when they started raising the Adaport I take daily, from 3 twice a day, to 4 twice a day, to 5 twice a day, that's when I saw the creatin jump.. 100 to 107 to 109 then one week later to140.
He's not sure about the white cell count yet, sadly, but my liver is doing much better, and I'm so grateful to not have to get a liver biopsy. They would have had to go through my neck. Since I have fluid around my belly.
They drained me today, and not too much, only 5 liters..but he's concerned, saying that it's very rare. When I was in hospital they kept saying it happened, and that I may still have it for a couple of months?now, one of the top consultants is saying it's rare.
So, we will see.
I'll keep you updated..on that and any shananagins that may take place while I am here..not that I will have anything to do with that sort of thing..as you know, I'm a Saint in the hospital..but, I'll be happy to take note of when others behave badly.
I hope your doing well! I'm drinking hardly any Coke and mostly having water. I'm also wondering why spell check may or may not be working on here's? That's the problem with being dyslexic ...
Hi Kim your having a wee bit of a hard time..It can be like that Kim up and down somtimes having to go in to sort things out..don't worry I'm sure you'll be out in no time and back home..hope it's soon.Xx
Nods, yes, I know, and I'm so grateful, because there are other folks in here who are in dire straights..that's tough..one of the ladies here had the multi visceral transplant, so like 6 organs..they are from another country, and her family comes in/ flies in each weekend I believe, but she had 6 organs transplanted, was here originally for 6 months or so, went home. And then had to come back, as one of them is failing, bad. So now she needs that new organ which must work with her body AND her other 5 NEW organs..so really, Bollie, I should just hush it.
But it is hard, so close to Christmas. Im trying to not be a baby, and also to be settled.
I'm just hoping my white cell count heads Due North..not South..because I'm not sure what the will do then!
I know! Talk about your miracles.. Sighs, but she looks so I'll now..her father is so nice!
Oh no 😫😫 bless you xxxx sure this is just a hiccup - rob had many after transplant (all different reasons - infection - tacrolimus toxicity - bile stones) - you are in the best place and yes I agree - the drop in meds will more than likely be to push up wcc 😘😘 and because your in Hosp if needed you can have IV immunosuppressant xxxxx you have been doing so well 😘😘😘 (me being a nurse) - drink water 😂😂 Coke doesn't count (yukky stuff) xxx how about doing some 'infusions' ??? Water with the fruit in ?? Or sorbets ?? - I am always nagging at rob to drink water as he can spend days only drinking a glass of water with tablets and that's it !! Although he will drink a pint of milk (only full fat tho 😝😝) - try and book it into your schedule - say a glass of water with meals/snacks xx I am so lucky I love water - but it has to be room temp 😂😂😂😂 weird 😅 xxxx now you get better and get out of the hospital for Xmas ❤️❤️❤️❤️ love and hugs xxx
Thank you so much for the encouragement and the suggestions!..water with fruit is a great option for me. And I can buy a juicer, for that matter, and use lots more water? What are your thoughts on that? Good?
Hi Kimberley, been wondering where you have been and now I know. Poor you x you were doing so well post transplant. Ive never been good at the water regime but I drink no added sugar flavoured water which is better than none. Good luck to you and hope things settle down a bit after all you have been through
Hi sweetie, Asda do 4 bottles of various flavoured no added sugar water for £1.50. I loathe tapwater and drink pints of this instead. Not ideal but I wouldn't drink any water otherwise. Still got catheter in but have a urology consultant 1st appointment on 11th January at the hospital where I go for everything to do with my liver so wait to see what he says about my acute/chronic bladder retention. I was so pleased to hear from you post transplant. Are you starting to improve. I do hope so. Ascities very unpleasant from personal experience. The relief when they drain 8 litres is indescribable. I got my presents for xmas online in October, only for the ex and my auntie and I put my tree up last weekend. See hepatologist Feb 12th. See what he has to say about my situation. At least you haven't lost your sense of humour! Gosh, you've been through a lot. I was going to send out a search party a while ago when you weren't on here for a while then it turned out you had had a transplant!
Got a box of night catheter bags for xmas from the district nurses. Lovely present!
Thanks for the info, and yeah, I know allll about the ascites..lol..I was getting drained at one point 19 to 21 liters..ughhhh..women were asking me when I was due..yet I got so skinny underneath!
Hi, yes I had the pregnancy questions. The worse for me was the muscle wasteage in my legs having supported my huge stomach. Took a long time for my legs to get working.
Hi kim cazer here sorry to hear you having a worse patch...as you may remember im a pre transpantee with pbc(autoimmune) is creatind 138 high then? I seem to be having changimg symptoms all very suddenly! Being basic ..
Yellow stools dark urine ...not much itch at mo but bilirubin still only 22 so borderline asessment
.i know i shouldnt really be asking questions when you so rough but you seem to have a lot of knowledge.crossing my fingers for your blood tests.x
It's my understanding the 80 is the target goal, at least for me.
The fact that it was rising, from lack of water it was a slow incline, but then it jumped from 109 to 140 in 7 days..it also pulled my liver along for the ride. Ugh.
I forget, do you have cirhossis?
Thinking a good thought for you, as ever, and hoping your holidays are great!
Xxxxxxxx
Kimberly
Ps there's nothing wrong with wanting a new liver after being ill for so long..of course you have questions..I wish I had more answers..,Shall we ask Mr. X? Or Bollie?
Are we the only ones awake at this silly hour?.ive been fairly badly nicturnal since gettimg ill..
Whoops cant spell ha ha!nothing new thrre yhen...
Whoa its getting worse ..
Yes sensible spelling head now..im stage 4 cirrhosis varices bilirubin rising ukeld 50 have got to go in feb rather than june for check ip oh and teeth rotting as we speak despite all best efforts.
Borderline assessment level.xyeah great ask bollie n mister x
Sighs well that sounds wretched..I'm so sorry..I hope they put you on the list sooner than later..it's so hard waiting, especialliy knowing you have to be sicker that not to go on and then more waiting. I have no idea what my MELD was..equivalent to UK ukeld. I think mine was borderline also, but my issue was the massive ascites. Which was getting worse by the day, and I had stopped eating. I just could not do it anymore..so I was losing so much weight under the fluid, I was at zero body fat and my liver was going after my muscles.
It's different for all of us, that I know for sure!
And sleeping is bad for all of us. We often switch day and night, or don't sleep for days, only to fall down for weeks on end..sighs.
Thinking of you sweets
Xooxxo
Kimberly
Ps I write crazy too at night..lol..ill start writing in bed and then my iPad bangs me on my nose or mouth..ouch!
Yes its wierd isnt that youve almost got to wish yourself sicker to hopefully get listed..
Then be the illest to get an organ...whem i was first diagnosed they were doing them on quality of life grounds...now the goal posts have moved completely but as the consultant said if ld been transplanted 16 years ago that liver might have been done in by now.l do just think that what will be will be ...
Did your white count improve? Was it that and fluid they had you back in for?
I find it really good to chat on here quite therapeutic like the choir.funny met a new choir master today and apologised for sittimg when she said stand up as i wasnt very healthy...
She askef me what was wrong i explained as briefly as poss and she said oh we can get you better surely there is something you can have for livers....i said milk thistle..
If only!!!i tried to explain that my liver would not recover and i might be assessed next year but i it just went over her head!!!i know people mean well but they just dont get it!i think we should spread the word that ...no need for transplants just take milk thistle.
He he!!!!or drink orange juice as my brother suggests.xxxxx thanks for chatting.x
What is it with people understanding liver disease -I tell people my husband has haemachromotosis which was only discovered this year resulting in cirrohosis and being assessed for a transplant -everyone always says ah bit he did like a drink though -grrrrrr. Yes he liked a pint or two but no alcohol didn't give him this genetic blood disorder. They always then say ah but lucky the liver repairs itself. I give up !!
I tend to say its the same as ms or rheumatoid that your body is attacking its own parts and that ive had no fun gettimg it which does make sense to some people but yhey still tjink it can b healed...and i rhink that is the most frustrating.a family member has a brain tumour which is none cancerous but could kill them....and there has been huge concern over this and yet my liver disease gets ignore as if its a bit of a cold! I dont want to make a fuss but on the other hand it would b nice if it was acknowledged.i dont know what the answer is in the meantime we are stuck with defending ourselves.even when i told someone i might b being assessed for transplant in 2016 if last blood tests stay the same....
They just said oh that will be good wont it.whereas the big c gets a oh dear how terrible...i dont want people crying over me but just a little sympathy woildnt go amiss!.is your hubby on the list?i wish him luck with getting a successful transplant at least he has you standimg in his corner best wishes cazer.p.s.apologies for the rant.x
That's exactly exactly the reaction my husband is getting. If he even so much as mentions his health his family avoid eye contact and ignore what he saying almost. We think it's denial but I honestly think it's like you say that we talking like he has a cold! He was assessed for a transplant in sept at st James Leeds snd they said he isn't I'll enough yet. Same reaction as you got 'oh good news that he might one day get ion the list then'. As if it's a procedure that is as simple as a wart removal!! Of course some people usually we find people who have experienced illness :disease themselves are better. Like you say we don't want sympathy or attention but I know my husband would like a weeny bit more support and love off his immediate family
Unfortunately he is going to have to be laid up in hospital and be visibly I'll before they wake up to this horrible liver disease
Wish u all the best and hey ho least the lovely people on. this excellent site understand
I sometimes feel like sjocking them to get a reaction but then you would feel bad for them! But i read some statistics that ive a 9%chance of dying within the year which is actually worse than the survival rate for transplant so i just want to get on that list now.my youngest son is 16 so i want the best chance of survival! Has your husband got to be reassessed then or will they just watch his blood tests? Does he have varices ?
We talk about that -getting his family to sit down and quote them mortality scores but we end up saying what's the point. Yes Leeds said they will follow him up regularly which is what my husband really wanted as he worried he will develop liver cancer so wants to be under regular monitoring
He has one varice forming (said they will do yearly gastroscopy) he got portal hypertension and of course enlarged liver and spleen
His symptoms at present is fatigue and aching joints and muscles but he tries to rest as much as his full time job allows. Only thing leeds advised is to keep reducing his weight as they said he needs to be a lot thinner for transplant.
Symptoms much same but not worked since first unwell when pregnant 17 yrs ago...never recouped enough..takes me till middle of day to get showered and dressed!!!
Loved my job as dispensing optician but at least ive seen kids grow up
Dont think too much about cancer in liver as when i asked they said you cant really see all nodules as they ca n be hidden behind scarring.
So thats not very helpful!! As you say this site helps when im awake on middle of night or feeling low its a real help.yoir hubby must have mo life outside of work as i expect he just crashes the rest of time?best wishes cazer.
How you doing kimberley?had a nice christmas day but still popping the painkillers for the teeth.hppimg u manage to stay away from hosp for christmas.x
First thanks again, for everything! All of your ally make this whole thing sooo much easier!
Pretty sure you guys are part of my holiday miracle this year also!
So, I'm back at home, and doing ok.
I go back to clinic on Monday.
So, the issue now is that they are still worried over the low white blood count, but now I've been told by one of the top Docs that my ascites this long after transplant (6 weeks or so) is NOT normal.
They may need to insert a wire into one of the vessels to see if there is a blockage? By using a dye. So there we go.
I'm just praying my counts are still on the good come Monday, or I'm afraid they will admit me again.
Which I absolutely do not want..not this close to Christmas.
But, I'll do what I have to.
Also,
For all of those of you in AA, or thst need it, or that want it, or that just don't want to drink, thank you for the conversation and the discussion we had on this link. It really allowed me to get outside of myself. It's a privilege to share my story and to hear yours. You really helped me, trust me. I was feeling sorry for myself and a bit scared, to be honest. And worrying about you guys is just what the doctor orderd. So thank you.
All of you mean so very much to me..
I really don't think I could have gotten through the last few months without you..if I'm honest, and I'm going to be..I already knew this was my last holiday. I knew I was dying. I knew that either my illness would take me, or that I would choose to end my life on my own terms. I know that may sound foolish and selfish to some of you, but for some of you, it may not. You may understand completely.
My advice is this.(.use it or don't.)
Just hold on. Things will get better. You may not. But things will get better. Just get through today. Distract yourself. Help someone else. Remember, your not alone. Someone else is sicker, or sadder that you are right now. You may think you are useless and helpless, but your not. You matter. Your life matters. One day, maybe someone will need you to tell them that. And maybe you will be the only voice they can hear out of all the voices around them and in them.
Lovely words hun def understand where your coming from had moments where ive tjought cant stick beimg incapacitated and ill any longer but as you say usually if we can distract ourselves with someone else difficilties we can
Kimberley, your words are Powerful and read like poetry - Thank You so much for your humane input on this forum. You are 'our' shining Star! so courageous xxxx
kimberley x are you ok? x you havent been on for a few days x you helped me with your lovely encouraging words over christmas so i thankyou for that x sending much love to you x hope you are ok xxxx
Hi there sweetie! Yes, I'm here! Sorry, did not mean to worry, just busy busy like a bee, giggle...trying to recover from the holidays! Actually, 2 of my friends I met in hospital, both are liver transplants are in hospital right now, for various things, and I've been worried about them..any little thing and BAM back to hospital you go!
How are you? We're your holidays ok? And how are you feeling? Good I hope?
I hope everyone is doing well..so sorry if I made anyone worry..I would never want to do that!
Actually, my holiday was very blessed! Then I turned 49 on the 29th! My, time surely does fly..in the blink of an eye, your looking at wrinkles in the mirror..but everything is still ok!
Glad u managed to stay out of hosp for hols.lm knackered but had a good time...my sister in law hosts christmas lunch....22 of us including kids..
Dont know how she does it!!! Means my hubby doesnt have to cook.just curious how did it feel when you started to get ascites..
My tummys been really feeling bloated the last few days and ive felt more queasy...? Know i have to go to docs but they are not so afay with symptoms etc and dont want to end ip going back yo qe for no reason.x cazer
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xxxx
Back again!...Cirrhosis, DVT and those s**t days! I need to speak to my 'Liver Doctor' who has failed to make my last 2 previous calls.😶
Devastated is this the end?
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