Unwell after a transplant

Hello all,

I have been feeling unwell the past 2 days. Sort of feverish, nauseated and loss of appetite. I'm just constantly cold.

Anyway I called my GP and they gave me an appointment and told me if there are appointments for blood available they will do that or I have to wait? I explained my situation and I said usually the coordinator expects the blood test to be done asap and results to be available soon as? Or am I talking rubbish?

I've had my blood test but they told me to wait until Monday for the results!

Any advice? And how does your GP deal with it when you are unwell?

Thank you

11 Replies

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  • You need to be sure its not rejection. I would clarify with the liver transplant coordinator asap. They might suggest you get to hospital before Monday.

    Don't panic though as rejection can be sorted with meds, but for obvious reasons it has to be sorted.

  • Thank you rodeojoe. Well this is what I explained to the GP but she seemed so relaxed. I haven't actually in all honesty been in touch with the coordinator. When I called one about 4 months ago she was quite rude and said to call in emergency. It was an emergency as I was vomiting at 11pm at night. After speaking to another one she told me to immediately go to out of hours surgery and that was at 4am.

    I feel I will be disturbing them. I'm not one for wasting time but when I fell ill in the first place the GP thought it was gastritis regardless that my lft came out high. She put me on some crazy cocktail of drugs and then she added anti depressants thinking I'm having a break down because I was confused (encecalopathy). I went from being a typical human to suddenly a mentally unwell person within weeks contemplating suicide as I was so unwell and nothing was making me better.

    Anyway I will give them a call tomorrow. Hoping I will be OK by then.

    I'm just wondering how does everyone else's GP help them when you tell them you are unwell? Do they immediately do bloods and get the results back?

  • I should report to the GP for emergency in the morning, and he would deal with you after treating those on his list of appointments.

  • I would agree with Rodeojoe and talk to your transplant team today. GPs can be great but they do not necessarily understand the implications of transplant. Failing post transplant team, phone the ward where you were post op: they will be able to put you in contact with on-call hepatologist.

  • I'm sorry to hear your feeling unwell. It sounds like you haven't got much support from anyone at a time when you need it most!

    Here is how it should be done. When my husband had his transplant the transplant coordinator worked with our local GP to ensure everything was perfect from a meds point of view. The surgery did not prescribe anything without talking to coordinators first and doing bloods.

    Here is why. 2 years after his transplant he had a kidney stone and had to go to our local hospital. Not the same hospital he had the transplant in. They prescribed antibiotics called Clarithromysin. This prevented the absorption of tacralimus (Adoport) immune suppressant which resulted in symptoms of paranoia, hallucinations, unable to eat, random pains, total irrational terror and angst.

    Its the little things that get you every time. Our GP surgery picked the mistake up, but after taking just 2 Clarithromysin the harm was done.

    He is now one a different suppressant and any new issues of meds are screened by several drs and a couple of farmacists too.

    Sorry to be long winded about this but its important.

    He can ring the surgery anytime and gets either a same day appointment or drs phone call. The important thing is its on the same day no matter what time. Out of hours is OK but can be hit and miss. Best option on a weekend is A&E if you are feeling really I'll. Don't feel bad about it. The NHS has made a big investment in giving you a liver transplant you must look after it and yourself from now on.

    Once the current situation is sorted make an appointment with your drs and have a frank discussion about what support you need from the. Make sure its written on your notes so that all surgery staff can see it and respond accordingly.

    Hang in there and look after yourself. It will get better.

    Berties xxx

  • Hello πŸ˜…πŸ˜… exactly the same happened to my hubby 4 months after transplant and he had a weeks worth of Clarithromycin πŸ˜“πŸ˜“πŸ˜“ and a week in hospital - they didn't know what was wrong with him so I did a 'Google' and found out and told them 😁😁😁

    In reply to original post - whenever my hubby is unwell I ring Drs/out of hours or just get him to A & E - I won't leave it until he has been seen - once I did and he ended up with sepsis 😧😧😧 - your transplant team should be helping you - any fever or raised temperature and you need to be seen ASAP same with sickness - if your being sick your immunosuppressants won't be giving you what you need 😘😘😘 which could make you feel unwell - I would ring your transplant co-ordinator straight away and out of hours - tell them you have a fever and you feel unwell and that you have to be seen - don't let them fob you off - sounds like you definitely need to be seen by medics who can do bloods instantly and see what's going on - failing that just go to your local hospital and tell receptionist you are post-transplant on immunosuppressants and you need to be seen ASAP 😘😘😘😘😘 good luck ❀️❀️

  • Talk to your transplant team asap. I had this happen mine arranged emergency bloods but turned out to be nasty ear infection but was told had done the right thing. They would rather you contact them & it turns out to be nothing than wait & it turns into something more serious. Good luck hope you feel better soon.

    I don't know how your team work but our coordinators say if need ring & it not important they will ring you back if leave message, but if important, as yours is, ask them to page the on call coordinator & stay on the line while the page her, so can speak to her asap rather than leave message & could be hours before return to office & get it

  • Thank you all. Last night I started getting really bad leg cramps which were excruciatingly painful. I then also developed tooth pain suddenly which was so bad. I called out of hours and 111. I spoke to the GP receptionist today and she said that results were here and I have to go back for another blood test due to a query on one set. So I asked her if I could speak to a doctor because it was important. I explained about the implications it could have but she said to call back Monday or arrange a blood test next week. I told her she didn't understand and she kept saying 'yes I do'. She was quite rude. I spoke to my coordinator who then called the doctor surgery and even she was told the same. So now tomorrow I have to call the doctor and get the results explained and only then can I proceed with dental treatment? I needed a root extracted when I went in for emergency but the coordinator said not to go for any treatments.

    Luckily the nausea symptoms have disappeared but I'm looking dreadful and feeling dreadful. She said I cannot have treatment in case of clotting issues and so on.

    She was nice though and said not to feel ill and sit at home. If I feel rough I should call her back.

    But I have to say I have a rubbish GP surgery and I had an even rubbish one before then. Then again I never hear of great GP surgeries. The battle always seems to be with the receptionists at every surgery!

    Thank you all!

  • Well my results are here and yes there is an infection somewhere. Here are the queries on some of the things. I have had a repeat done today so let's see. I called the liver coordinator office today and they said someone will call back tomorrow. It is quite annoying. Some are brilliant and some just do not act up on it.

    Anyway here are the queries.

    Serum potassium- 5.7 mmol/L (normal is between 3.5-5.3)

    Serum urea level - 9.7 mmol/L (normal 2.5 - 7.8)

    Bilirubin - 22 umol/L

    Gamma GT level - 137 u/L (0-45)

    ESR 32 mm/h (0 - 15)

    ALT 33 u/L

    Think the ALT is fine.


  • If they are not sure where the infection is or what it is they may treat you with a course of broad spectrum anti biotics and see what happens. Yes the ALT is ok. ESR is an inflammatory marker not necessarily to do with the liver, could be any body tissue.m GGT is high, that one is quite sensitive and may take a while to normalise. Urea and potassium out of range suggest your bodies electrolyte balance is a bit off, may be the infection, may be something else. Probably more doctor detective work needed. Hope you start to feel a bit better soon. X

  • Thank you bolly

    Hopefully the coordinator will call me today and I will relay the results to them.

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