hi, anyone got any idea as to what their GFR level, or creatinine or urea levels in blood were 2 years onwards post Tx.
I was shocked today to find my GFR is 32 and until now no one has ever uttered chronic liver disease Stage 3b. That can’t just happen over night and GFR results hasn’t been listed in any of my clinic letters to date.
I’m on 6mg twice a day of TAC which can’t be helping as the lowest my potassium has been is 5.7 but usually I get recalled as it’s 6.6+.
Can anyone tell me what the logic would be if having a liver transplant only to result in stage 3b liver disease within 2 yrs. what sense does that make. It’s a genuine question and one that I’m truly shocked asking. I’ve never felt more scared since the transplant journey started than I do right now.
the irony is I wouldn’t even know this as consultant sent my consultation letter to GP only. I phoned and asked for a copy of it as I usually get it but consultant I saw wasn’t my usual one and doesn’t issue letters to patients following consultations.
I’m sure as hell going to struggle to get my head round this, as it stands with all the complications post transplant, the additional major surgeries, multiple stents, cholangitis, pancreatitis, bile duct reconstruction/rerouting and partial vowel removal, why would you put yourself or be advised to put yourself through that to end up in such a short space of time at Stage 3b liver disease. I thought the meld score was based on likelihood of being alive in 5 years with/without tx.
Anyone else is same situation?
what would happen if lowered the TAC meds to try and alleviate pressure on kidney? Could I cut it from 3mg twice a day to 1 twice a day??
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Firstly, you are entitled to see a copy of the letter that gets sent to your gp. It doesn't matter what the consultants view on that is, you are entitled to it so always ask for it. For me its usually a question asked when you book in at reception but differing hospitals may have different practices. I cant remember what they do at the QEHB but I do still see those so maybe I ticked a box somewhere, lol. They also have an electronic system there you can view various results yourself too, but not all have that.
From a kidney point of view its common for Tac in particular to effect this and its one of the main reasons your kidney function is regularly monitored. I'm very surprised its been let to get so low without them at least talking to you about it. I know mine are pretty hot with it and have looked at reducing the meds if they start to see a bit of a drop.
It is a bit of a balancing act to protect your new liver without significantly affecting other things and a reduction in kidney function is very common, even to the levels you are experiencing. However, thats not to say it should be ignored and some action should be taken to at least investigate that further or amend things to try and improve it.
6mg of Tac is still relatively high a dose. I was on 4mg for a long time but they've just reduced that down to 3mg, and that was because of a drop in GFR. However, it was only done in the knowledge that the liver tests had been all good and very stable for a long time. The have though just done another blood test to check the reduction in dose isn't leading to any reaction on the liver. The jury is still out on that as my ALT had risen since the reduction in dose. So I'll wait and see if they choose to kept it at that level. And thats really the important message here, DO NOT alter any medication dose yourself. Any changes have to be closely monitored and that won't happen if you do things yourself. You may inadvertently not do much for kidneys but make things much worse for your liver!
Do you take any other anti rejection medication? I'm on a dual protocol with TAC + mycophenolate. This means they can reduce the TAC dose to a bit lower than if it was just TAC alone.
thanks for reply. I’ve been through every consultants letter following appointments since diagnosed with liver issues and the lowest the GFR was reported at 143.
This latest letter which I asked for the copy to be issued, has just added under diagnosis ….7. Severe retail impairment GFR 32 and Creatinine 165. Then in the dialogue, a simple statement “ renal function continues to be impaired”. When did it first become impaired?? When did decline start?? Not a soul has ever mentioned this to me. Surely if it’s just happened they should be repeating the tests??
I know I’m asking rhetorical questions to some extent but I am beyond astounded and not in a good way to discover my kidneys are at a non recoverable stage in terms of CKD in this way.
In terms of TAC, my trough TAC level at6 mg ( 3mg twice daily) is 8.1 so there’s not a lot of scope for significant reduction. The only other drug I was on was azathioprine but they stopped that after the dose was reduced to 25mg, which was described to me by this same consultant whose letter I’ve referred to “as a waste of Scottish nhs resources as it’s a sub medicinal dose”.
in all seriousness with such a severe and rapid deterioration in kidney function caused by the liver meds, I’ve asked myself overnight what’s the point. I’ve been though enough, 5 stents by ERCP, umpteen episodes of cholangitis, hepatic stents, bowel dissection caused by migrated stents, acute pancreatitis and chronic pancreatitis, bile duct reconstruction, PTSD diagnosis . All since transplant 2 years ago. I’ve literally had enough. The only fight I have left in me is to find out why I’m only now being told I have severe renal impairment. I think this is gross negligence on their part. I’ve not had an alcoholic drink since 28/12/2018, but I’d be a liar if I said it didn’t cross my mind last night.
Hi. I just saw this but working so will have to be brief but can reply more later. I am 7 months post trans and stage 3 b too. My doc is lovely and very clear. 3b kidneys can stay that way for many years. As to the why? I am here. I am alive. I nearly wasn't. I have 3 girls. Saw the youngest go to prom. Had another Christmas and am optimistic for more. Reasonable optimism too. I have had ERCPs and may well been a furthers bile duct surgery as it ERCP didn't work. I was on deaths door and a transplant saved me. It isn't a cure but it is a sort of fix. Can respond later.
I wasnt at deaths door, my MELD score (which I found out after transplant) was 51. I had my transplant dec 2020 right in middle of covid. No visitors, dropped off in the car park. after all I’ve been through since transplant over last 2 years I am sorry I can’t feel optimistic….nor grateful. But to only discover there’s something seriously wrong with my kidneys when it’s got to stage 3b has shocked me.
I’m a biochemist, I scour every letter, question all things. My kidneys would not have escaped my attention.
Thanks for your reply, it was good of you to take the time.
Hi, I'm 5 1/2 years post transplant, I had my transplant at Addenbrookes and we always get bloods on mychart. My kidneys were badly damaged within weeks of my transplant due to tacrolimus and valganciclovir, lots of iv fluids and drug changes. I currently have 40% kidney function but it's stable so doctors not worried. I only take 0.5 mg of tacrolimus twice daily to help my kidneys and also 500mg mycophenolate. gfr is nothing to do with your liver. If you have any concerns phone your coordinators they will be able to reassure you, if your doctor was concerned you would be in hospital, 5 months post I went to clinic and was called back in the next day as my kidneys were so bad. Drink lots of water it helps flush the drugs through your kidneys causing less damage.
If you use Facebook please feel free to join our friendly and knowledgeable Facebook group called liver transplant support uk, many people in the same situation.
I am sorry if I seemed rather blithe. I too was on azathioprine at first and kidneys took a hit almost straight away so switched to mycophenolate. However they have continued to decline to the stage I described. Like Hilary, I am an Addenbrookes patient and get blood results on my phone within days with explanation like stage 3b. I saw my consultant last Thurs and did mention my kidneys as the trajectory is down. It was he who said those kidneys could go on for many years ,but they keep a regular eye on them. I truly was at the writing last letters to family point, so I guess I am at the eternally grateful stage still, if it ever goes ,I don't know. However I did a whole lot of weeping for a good 3 months and still have medical based nightmares. Can I say as far as an online stranger can, that you sound understandably low and understandably angry about the lack of feedback. Can you ask to speak to someone from your team and express your concern and ask what and why you were not kept informed? Also have you thought about talking therapy? I think we all underestimate the trauma and emotional exhaustion of all we have been through. What is your quality of life like now if you don't mind my asking?
No, you didn’t sound blithe at all. Your observations are correct, I am “down” because I cannot fathom why I haven’t been kept informed as to the rather rapid deterioration in kidney function. I am a nightmare patient, my professional background makes me question and query anything and everything. The last comment and only comment re my kidneys was a few months post tx and along the lines of “you’ve slipped into stage 2 but don’t worry it’s recoverable”.
Reviewing my creatinine levels, there’s been a huge decline (increase in level) in results from last blood test in October 22 to this latest one. But as I’ve said it’s the first GFR reading I’ve seen, which has obviously been impacted by the continuing relatively high dose of TAC that I’m on.
I am open to all sorts of recommendations re therapy. I am now on a 35 week waiting list for psychiatric assessment and the letter I got to inform me of my position in the queue also very kindly provided me with the Samaritans phone number. I don’t know who crafts such letters but I would strongly advise altering the algorithm that generates the missive as I did not find the inclusion of the Samaritans number helpful. Indeed it just made me consider the fragility of life itself!
I really do appreciate you taking the time to reply. Each of the replies to this thread has given me questions and approaches to follow up on IF I GET a reply from the telephone conversation I had with Edinburgh transplant coordinators yesterday, who were going off to discuss my concerns with a Consultant!
MY OWN DISCLAIMER:
If there are people waiting on a life saving TX, please don’t let my experiences and attitude put you off, each person’s circumstances are unique, mine just seem to have been extremely testing to me personally.
Obviously Scotland operates differently.Here you can self refer too while you wait for CBT. It's not a full assessment in the same way a psych one is. It might help a tad in the short term. Could you hassle the g.p to get your assessment expedited?
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