Diagnosis, or partial one

First, thank you everyone for your support while in hospital.

I don't know what I would do at this point without you..really, I don't.

It was a sheer dumb luck kinda thing that I went in when I did, as they found my THIRD staff infection in my pic line. I think I had been getting sicker and sicker for nearly 6 weeks by the time they caught it in hospital.

They had to sort all that first. I was also able to get a drain (Ill be having another on Monday, after clinic)

Finally, Monday, I got to have the procedure I went in for originally. The Liver biopsy.

They were thinking they would see strange pressures involving the IVC. (Prior to this they had found minuscule blood clots in the portal vein and thought THIS was what was bringing on the late ascites, to be cleared up by 1800 mil of Deltaparin injections daily. Alas, after over three months, the ascites remained and I'm still on those injections and will need to be for the foreseeable future)

Instead, what they found were high pressures throughout my new liver. The highest should be no more than 12, the specialist told me, but mine was between 18/19.

Portal Hypertension. On my new liver, or in it. We wont know if there is any fibrosis yet or any type of congestion until the biopsy results come back tomorrow. They feel strongly that no cirrhosis will be found.

They started talking about a shunt. And soon. The same thing they wanted to do for me prior to my transplant. There is a less likely chance of HE because that seems to accompany cirrhosis more often than not. But the risk for varacies is back again also.

I feel like I've been punched in the gut. Literally. And until those biopsy results come back, it wont be a full diagnosis.

My drain specialist, bless her, came and sat with me. I cried. I finally told my partner. He was at his office, and was getting very upset over not knowing.

Then they sent in my transplant coordinator. They NEVER do that. That only happened because they wanted to see how I was taking it all. Was I ok? They were trying to make me feel better about what is happening. I get it.

Not good.

I know, I know..lets wait and see what happens..but it already has, right? the ascites is back. The pain is back, as it being tired all the time.

My partner is yelling and blaming them..saying they knew the liver was bad..or that they knew this transplant was only some kind of stop gap. Of course that is not true. He's just scared..and it's easier to be angry than to feel defeated, or to feel fear.

My consultants looked stunned when they came to my hospital beside. I think she also was upset in that the radiology dept. head, who did my biopsy, had already spoken to me..I think she was not ready to answer questions, and to be fair..until those other results come back, we dont know how bad the liver is doing.

Does ANYONE have ANY experience with this? Portal Hypertension accompanying ascites.

I'm praying they caught it early enough..the last biopsy few months ago showed no pressure issues.

Not trying to be a baby, not trying to be ungrateful..god knows I am Grateful. . There's every reason to believe I would be dead had I not been transplanted last October.

But..I just don't understand..how can this be happening? HOW???

They were so happy with my liver..They just smiled and beamed at my beautiful young new liver. Did I do something wrong? Seriously..could I have of? without knowing? my diet? wrong medications? Not enough exercise? There HAS to be something..right?

sighs. sorry to go on and on..I feel like Im working through some emotions while writing this..forgive me me for that. I dont want to delete this entire post and rewrite it. Why? laziness. plain and simple! lol

Thanks in advance, for everything you guys do.

cheering you on!

XXXXX

61 Replies

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  • I completely understand how you feel. Can you clarify that they are still unsure what is causing the portal hypertension? (Not that I can really offer any advice or experience of this )

    The specialists, surgeons, consultants and transplant coordinators will be devastated that you are not doing well, and I'm sure they're doing their best to sort you out. Their job is to get you back up and running and they'll be disappointed you aren't. As we all know this is a procedure that they don't do light heartedly. They only do it if they think they can get the best results.

    Hang in there

  • thanks Rodeojoe.

    I think, THINK being the key word, lol, is because the portal vein and the other are not flowing in and out at the same pressures, thus effecting the whole liver? Again, not sure. Just know that's the term they used yesterday, and then immediately followed it up with the shunt option, thereby bypassing the liver and allowing the shunt to do that job.

    They gave me a lot of info yesterday, but portal hypertension is the one they wrote down on my ipad for me.

    and your right, they don't do anything lightly, and I do know the other word that really upset me yesterday was transplant. again. If this liver is not going to do it's job properly. They are hoping the shunt will stop the need for that. Either permanently or at least for the time being. It will depend on those biopsy results and if the liver is damaged already from the high pressures.

    thx for replying

    XXXX

  • I know how frustrating it is when you realise you probably need to have done 5 years in medical school to understand what's wrong. That's the point at which you really do hand over your trust for the professionals to make the correct decisions. I'm sure they will.

    I'll be honest with you, although another transplant is not what you wanted to hear, at least they've said it's a possibility. One way or another they will fix you.

    Honestly I would have gone through it all again just to be feeling like I do today. It's hard for me even to remember how bad things got, and from where I'm sat it looks like you still have every chance of that yourself. Be grateful (I know you are) that the doors still remain open rather than being closed.

    Rooting for you!

  • : what are the normal numers for liver tests and what do they mean, I'm trying to keep up on it all, but I've got quite bad brain fog and forget what everyrthing means. I write it down and when I come back to read it all, I need a list with all the info numbers and abbreviations. Is there such a thing?. Try the

    Kimberly, Im only asking you because I know how much you've been through and therefore how knowledgable you are. Not that you haven't got enough to think of!

  • Hi there!

    I'm not sure off hand..others have written them done before, the list of them and the normal range they should be in.

    But depending on the person, they can be higher or lower. I know my creatin is over 200 and it should be between 80 and 100. Mine has been hitting 230, 240 etc.

    But the others they say are good and within range..which is what they said when they transplanted me.

    Your tests CAN be ok but you can be presenting elsewhere..like I had the massive ascites, so they knew, no matter what those tests said, my liver was getting sicker and sicker. That was the first one.

    Now I have ascites, but I don't have a disease? That makes no sense to me. But I guess the high pressure in the liver is causing it.

    Sorry, not much of an answer!

    Xxxxxx

  • thanks sweets! your reply made me feel really good..and encouraged!

    XXXXX

  • Dear kimberley you have been through and are still going through the ringer!!! Cant believe you had such a shi..y time.

    Youve done nothing wrong its just sods law .i truely believe it will come right but you are in the middle of the pain at the moment.

    If you have to have another txp thats very scarey im sure but if thats whats needed! Maybe it would b better if they got on with it.

    I know i have no referance to speak from as im pre txp but i think maybe youve wondered for a while but didnt dare to voice it.now rodeojoe has said it .

    Maybe your liver just wasnt the right one for you...trouble is we know so little really !like the brain what else does liver do that we dont know about ?

    You are doing such an amazing job still suppottimg others...love the spelling!!!! Whilst having so much to deal with you are great.keep tough and crossed fingers for the results.

    Love and best wishes.cazer.xxx

  • Thanks you very much!

    And well, I'm hoping this liver might still be able to do the job? Fingers crossed, right? Early days.

    I hate coming here and complaining..but where else can I go.? You know how it is..must put on a good face for the family and friends who have already been through so much with you..

    Anyway, I'm just glad this forum does exist.

    And I am, as ever, grateful for you and your loving support!

    Hope your day is amazing!

    Oxoxoxoxoxo

  • Don't ever put on a "good face"!! Don't think of pleasing others when you don't know what is happening yourself. Yes be strong but remember, you have been gravely ill. You should be being fussed around and resting. I have cirrohis also and yes, I get tired and moody and sometimes just want to lock my door and forget about the outside world, I have NEVER played on my illness but when I don't put on my "good face", it's because I'm not feeling strong enough and I remind them that I'm trying to lead as normal a life as possible, but I'm not normal and never Will be. Can you make sense of this?? It's like depression, it's trying to be too strong for too long. Don't push yourself my friend and please don't be afraid to lose the "good face", your friends and family will appreciate knowing exactly how you feel. Xx

  • Oh you poor girl, kimberley! I have no experience in transplants at all so really cannot comment but its so unfair for you to be going through all this. You're always ready to help and give advice, even now when you're feeling so ill. I agree with cazer, if you need a new liver then it would be better to do it and get it over with, however scary the thought is. Sending you strong vibes and and look forward to reading a happier post from you soon xx

  • thanks marrianne22!

    Im not sure if they are even offering that to me right now..i think they are hoping this shunt will work..well have to see what they say Monday.

    But thank you for your support! I know you have helped a lot of folks on here with your support also..

    XXXX

  • Hi Kimberly, I'm sorry you have been given disappointing news, but I just wanted to let you know that the news is disappointing, not devastating. I was a surgical tech for 7 years, and I wanted to let you know that if you have any questions, I'd be glad to help.

    No one did anything wrong to cause this. Sometimes after transplant you need a little extra help to get the new organ settled in. There could be some blockage of in the veins flowing out of the liver that occurred as the liver and surrounding tissues were healing. The most likely area is where the new vein was sewn to your existing vein. If this area did not heal super flat, it can cause a narrowing in the vein there. A shunt would fix this.

    Sometimes the new liver is a bit too small for your body, which is something they try to watch out for when matching up donors to recipients but no one has a crystal ball to predict that the match will be perfect. Your body might be used to a liver with larger veins than your new liver. If the fit is close, the shunt could help give the extra drainage push that it needs so that your body can adjust to the smaller liver size.

    The biopsy might show that there is no damage or minimal damage to the liver. In which case, the doctors might decide to hold off on the shunt. It might be that the new liver will fit ok, but your body needs more time to adjust to the smaller size.

    A point to make here is that yes, the biopsy is testing for cirrhosis, but this is very different from alcohol related cirrhosis or disease-induced cirrhosis. This is scar tissue caused by high pressure in the liver. When the pressure is relieved, the cirrhosis does not continue. Its a temporary scarring from healing and the adjustment period after being transplanted, not an ongoing disease. Its not like, you get a new liver but you still have cirrhosis. Its not your old condition coming back. And the doctors will not make you keep a liver with significant scarring. They will give you anew one that fits better.

    Once you body adjusts, with or without the extra help of a shunt, your ascites will go away, the portal hypertension will go down, and you will get stronger and stronger. They are treating your staph infection, so that will go away too.

    I wouldn't be too worried about a second transplant, either. I mean, yes it is disappointing, and you have every right to feel how ever you feel about it. But, it would be ok. If the new liver is indeed too small and the shunt is not enough to help it work correctly, a better fitting liver can be chosen for you. The surgeons now know more about the size and requirements that are the best fit for your body, so they will match you with a good one. And the post op healing should go more smoothly with a liver that is the right fit.

    I hope that helps. Keep your chin up!

  • Oh, thanks so much for all that info! Really, I cannot thank you enough, and I'll show my partner also. I feel much better!

    Oh, the pressures in the veins they said are fine..it's the overall liver pressure they said..which maybe because the portal and the big one have differing pressures which are making the pressure in the liver high. But he said specifically it was not the veins themselves. He took those pressures also.

    Don't know if this makes a difference in what you said, or if I misunderstood?

    But either way..thank you so very much for your response!

    Xxxxxxx

  • So the pressure coming into the liver (portal vein) is fine and the pressure coming out of the liver (hepatic vein and IVF the big one) is fine, but its the network of vessels in between? Then yes, they can put a shunt in the portal system that runs inside the liver tissues. Its like adding an extra side road from the portal vein to the "big one" so that if there's too much traffic, the extra blood can detour straight out of the liver instead of getting stuck in all the side streets. Some of the blood will run through the smaller vessels and service the liver tissues, and the excess blood will take to short cut and run straight through the liver and out to the IVF. The end result is that all the pressures will be normal - before the liver, inside the liver, and out of the liver.

  • well fingers crossed that is what I will be hearing on Monday..from your lips to the gods ears, huh?

    :)

    XXXXXXX

  • Excellent clarity

  • Sorry I can't give you any advice 'cos still got all this to come but just to say hang in there..xx

  • Thanks very much!

    Cheering you on!

  • I can't offer any advice unfortunately, but there are others on here who have, so just wanted to offer good wishes. I doubt very much you've done anything wrong and is sheer bad luck.

    Wishing you all the best,

    Claire x

  • Thanks Claire! I need all the good wishes I can get!

    Xxxx

  • Great to see you back on here Kimberley, I think 4 days since your previous post. I was getting worried as you sounded so poorly. How are you now. Stay strong.

    Mike XX

  • Kimberley you are very brave and sensible. I am not qualified to answer here but I wish you all the best. Hope you get sorted soon. XX

  • Thanks for your support!

    Xxx

  • Heavens I am astounded by all you have been through. I am happy you are back at home. I can understand how you explained your feelings about all these turn of events. How do you find such courage? I hope things will keep improving, you did get to come home. I know I would find that a positive sign I woulld be ok. You sound very strong. My heart goes out to you. I will be thinking about you.

  • Thanks so much! Really! I'm not sure about courage, but I am determined! Lol

    I hope all is well with you!

    Xxx

  • Ive read how many horrendous things you have gone through; and are still going through; wishing you all the best and i hope everything turns out good in the end and your suffering will go x

  • Thanks so much!

    I'm sure it will get better!

    I just have to believe that God did not bring me this far to just drop me now!

    Lol

    I'm not a religious person, but I do believe in a higher power and a higher purpose!

    Xxx

  • Hi Kimberley

    I was really saddened to read your post. You must be feeling quite crap and rightly so. Although you are in the best hands and they will sort it all out. Although transplant may sound like a daunting path yet again but if it will make you feel better then it is worth it and it means they have HOPE with your health which is a positive thing.

    I do hope the biopsy will show what is happening clearly and hoping something will be done about it.

    Good luck and please rant as much as you like x

  • Aww, Jahida thanks!

    I'll try not to rant too much, Lolol.

    Xxxxx

  • It isn't even ranting. Ranting is usually when you complain again which you are entitled to! You're expressing your feelings which is totally understandable after everything some of us go through. Sometimes you can't tell friends and family. Some friends Dont even want to know the journey you are on or have been through. Anyway, we all come here for support and to find people that understand our worries and perspective.

    I'm hoping you got some results today and hoping for an update xxxx

  • I completely agree with you there. I can come here and say things without explainingg them, and that is so great!

  • kImberly, I'm new to this site but your posts are always so helpful and encouraging to others, you are in my thoughts and prayers x

  • Aww thanks!

    And welcome to the best site out there for folks like us!

    It has practically saved my life!

    Xxxx

  • Kimberly, wishing you all the best, I hope the biopsy results are positive, and either a shunt or something similar will do the trick and improve things. I think it is natural to blame yourself, or question what you may have done, but there is no way this is down to you. As others have said, just bad luck, which you totally don't deserve!!! However luckily you are obviously a strong person, so I believe you can get through this, and out the other side. It seems you have fought a lot of things in your life and won, remember that fighting spirit and positivity and you'll get through this as well.

    Wishing you all the best, will be thinking of you.

    E x x

  • Thanks you. I am feeling better about it. I kept myself busy all weekend.

    We get the results today!

    Xxxx

  • Keeping fingers and toes crosse for you and your liver. Hope things improve very quickly

  • Ooh, toesies too? Well that's great!

    Lol

    Thanks so much!

    XXXX

  • I send You lots of hugs, i know nothing about trasplants , but i am sure soon You will be feeling much better! My best wishes to You, keep the good work : )

  • Thanks you so much!

    Xxx

  • Dear Kimberley,

    They will definitely try and bypass the problem via shunts etc... But they can also tell how likely this is going to work... As you know my husband needed to have a 2nd tx and the journey was a real test of everything going... If they do say that (but I'm keeping everything crossed that they do) the shunt is not likely to work - then they must not waste time but get you prepped for transplant 2... You have the same criterion as before Hun so have to be fit and able to take the transplant operation. Your right without this you would not be here - if the shunt isn't an option then your on a race against time and don't allow anything to hinder that...

    I'm praying for you Hun and pray that they find a way to resolve this... But if you need another tx then that gets done soon as well...

    Sending you huge hugs and positive thoughts...

    Pear

  • Thanks sweetie. I see them today, before my drain. I will ask them how likely it is that it will work. Glad you mentioned that..thanks loverly girl!

    I'm nervous about the biopsy results, but fingers crossed it will be good news.

    I'm also curious as to how much pressure this shunt will relieve on the new liver, you know? All of it? Some?

    Should I start taking the propananol again? Things like that.

    Hugs!

    Kimberly

  • Hello Hun,

    Any news on what they will do??

    Very worried about you...

    Pear

  • Hi there.

    Ok, well they said they found more scarring this biopsy versus the last biopsy. They said they are looking at recommending two different things. The first is the shunt as a way to relieve the pressure. The second in just going straight to second TX.

    They will be speaking to radiology this week, dr. Allison said, to see if that's even an option, the shunt. Like can they place it, etc.

    He said more than likely I will need a new liver at some point, but I think they are hesitating to say too much until they know for sure about this shunt.

    I did ask him, ok, how likely is it to work, the shunt? She did not really have an answer. My partner said what if we sit tight and do nothing..what happens? Dr. Said well, she'll keep getting fluid that will have to be drained, she'll be uncomfortable. It can effect her nutritionally. Sometimes we see these things resolve themselves, but I don't see that happening in Kimberlys case, not with the biopsy results.

    But like I said, until they speak with radiology, it's up in the air.

    He did seem to feel the second Tx was coming either way. And yes, he did say, we need you healthy enough for that.

    He said the scarring was not cirrhotic. But that it had gotten worse in last few months.

    So, I feel like it's still up in the air. Until radiology. He mentioned that the kidneys will be hopefully helped with the shunt also. My creatin is over 200. Still. And he said with a second Tx the kidneys will have real problems. Did your husband see that, Pear?

    Any advice on what I heard.

    I mean, there was the whole shaking our hands, saying how sorry they were, blah blah.

    Thx in advance!

    Xxxxxxxxxxx

    Kimberly

  • Dear Kimberley,

    Yes - this is exactly what happened with my husband... Push for the 2nd tx! Don't wait as other organs will begin to feel the burden - kidneys are already unhappy and this is normal considering its having to compensate - with all the fluids you can understand why... Please ask them to discuss you at the next transplant meeting and list you as this buffering won't do your organs any good - you don't want to get to the point of being too ill to transplant...

    Read through my posts and you will see it was a race against time...

    Don't allow any time lapse or momentary consultant going AWOL.

    The shunt didn't work with my husband and caused him to have pancreatitis as they kept going down the wrong duct...

    Stay positive and keep me updated Hun.

    Pear

  • Oh wow. Now I'm worried. Ok. I'll read through your posts.

    Hoe did it go through the wrong duct? I did not not know it could do that!

    XXXX

    Kimberly

  • Hi Hun,

    The duct thing is obviously dependent on individual make up of how the ducts are etc so don't be alarmed about that...

    What you do need to be super weary about is that your body and organs will begin to heavily compensate for your liver and this will cause an almost domino effect - I have seen far too many become too ill for transplant very quickly Hun and this is my fear right now - if the shunts work then excellent and that should ease things all round - but if they are umming and arring then they need to have a plan b ready - tx 2...

    Do take care and keep positive - don't stop asking questions...

    Yours truly,

    Pear

  • Thx pear!

    Another question, my partner asked this and got no answer. What is we sit tight...and do nothing?

    I mean the doc. Said the liver is working.

    What if we just continue with drains and don't go with the shunt?

    Is this a bad idea do you think?

    Thanks again, for everything!

    Xxxxx

    Kimberly

  • Yes it it a really bad idea - the pressure on organs will be too much - the shunts give some relief - but draining fluid then gets to a point of overloading kidneys and you can go into kidney failure... You are better off pushing them for a clear plan of action and then having a timeline of when this will all happen... So if shunts? When? That should buy time to then find your 2nd donor liver - the best thing would be that the shunts do the job - then all they do is move your place on the list...

    What you don't want is to become too sick to have a transplant - kidneys and other organs need to be able to take the operation....

    Pear

  • Oh - the liver working part... Ask them how is that working? It's struggling so much and all this adverse reaction is clear evidence of it - the biopsy has clearly shown progression of damage and this has been over short amount of time hence more damage expected!

    Pear

  • see, that;s my thinking EXACTLY!! HOW can it be working properly if I STILL have ascites..they say all my liver tests are fine. But guess what? They were when I had massive ascites and was getting drained every ten days prior to transplant also. They offered me a shunt then too, but during the 6 weeks we were looking at that I got the call for tx.

    XXXX

  • Hello Hun,

    That's just my point also!

    My husband had same thing happening - you really need to ask for a care plan - ask what are they going to do and within what time - don't sit and wait Hun - you don't have the luxury of just waiting for them to react when everything starts to go downhill. Be firm and if the consultant doesn't look like they can make a decision then see a senior or even the surgeon.

    Your liver is not happy hence all the ascites and kidney counts -the BP could be a sign of cholangeopathy - if so - this means the tinier ducts are dying - I am praying that this is not the case - but your symptoms and results are resonating what we had with my husband...

    Ask for an urgent appointment and get an action plan in place...

    I've been worrying so much about you Hun... Keep me posted...

    Pear

  • I will pear, and thx again for everything! Xxxxx

  • I agree with pear-shaped. Try not to worry. Just do what you gotta do. I'm glad that you are getting answers and that you know the path you need to take.

    It might be helpful to say something like, "Don't delay the inevitable, doc. Let's solve the problem while I'm in good health." It might help him move forward.

    Say the same thing to everyone you speak to, even if you sound like a broken record. You might need a few docs in agreement to move forward, so it could help them all get on the same page.

    (((hugs))) You've been in my thoughts, and I think its going to be ok :)

  • Thx China..I hope so. My drain helped me feel better, so that's good, but for some reason I am sleeping a lot..even after the drain!

    It's probably just me be tired in general. I'm also having, for the first time in wellll over a year my visitor. I thought I had reached menopause, this must be a blip. But the doctor said if it was ongoing to check with my GP.

    Going back to sleep now!

    Hugs

    xxxxxx

  • Hello,

    Do please take care and ask your team for a clear care plan...

    Yours truly,

    Pear

  • i will Pear. I'm back to see them on the 27th.

    XXXXX

  • Sorry Hun - just seen your post about the 'blip'...

    This is not normal and needs to be investigated... Hopefully it will turn out as a blip - but can also be a sign of variceal bleed - again, hoping that it's not at all that...

    Make a note of it - sounds awful - but take a pic of it or even a sample with you to clinic so they can see what it looks like...

    My mum had liver disease as well Hun and went undiagnosed till it was too late..

    Pear

    Xxx

  • Continued...

    Point being - my mum had bleeding the same way and no one saw it as a issue...

    Pear

  • Ahhh, interesting! Well my visitor normally stays 7-10 days. Today is 8.

    Also, the last two drains have had blood in them, and THAT is brand new, but my grain specialist said for me not too worry. She tested something or another. Plus I've still been on Deltaparin injections (1800) every night for months, although I do not have it done the night before the drain. Also, the last one they used platlettes first because my while blood cells, part of it they were building up, since I was not clotting correctly.

    Lmao. Take the Deltaparin injections, then interrupt what they are doing with platlettes just to get me through a proceedure,

    They did the same thing with the platlettes for my CT scan, but that was to protect my kidneys which aren't so hot.

    Sorry to go on and on!

    xxxx

    Hugs you, I'm very grateful for you, pear

  • Hello Hun,

    There is nothing stopping them to make a judgement call now - they should have gathered enough to determine what is wrong and how they plan to treat it...

    Your experiences sound so draining and you must be really exhausted - your body/organs don't get much time to recuperate when suddenly you have to face another procedure...

    Please do ask them for a clear diagnosis and care plan Hun - keep me posted...

    Sending you plenty of hugs...

    Pear

  • I will..I promise!

    xxxxx

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