Please be aware - be your own expert or use your clinical specialist service if you have any queries. I recently had a basal cell carcinoma removed and skin graft on my nose. I knew this was a possibility because of the immunosuppressant I was taking post transplant and had spoken about it’s possible existence and removal within my specialist appointment a few months before the dermatologist subsequently removed it. On discharge I was prescribed some antibiotics for 5 days. Thankfully I read the accompanying leaflet that came with my drugs which stated it interacted with my tacrolimus (immunosuppressant). So the hospital had not read my drugs list that clearly stated I was on this drug which I gave to them on admission or weren’t aware of the drug interaction. Both surprising to say the least. Then on contacting my GP regarding my awareness of the drug interaction I had to spell out “tacrolimus” and my knowledge of the interaction. Sadly the GP was obviously not aware of my drug or my even taking it as it wasn’t on their drug list that I was taking this! This seemed to be because I sourced my drugs directly from my transplant centre as I was told to do a few months ago. An NHS /government directive supposedly to do with monitoring but being sceptical and working for the NHS for years , to me was cost led. However the fact that the local hospital and GP (locum) were ignorant of the drug and it’s interactions made me question the whole process and how as a transplant recipient you are led by clinicians who act with the best of intentions but with some overall ignorance. It has taught me to question everything or check with your specialist hospital clinicians. I do not expect all Drs to know everything about drugs I recognise there are so many but as an individual do check and don’t always just blindly accept what non specialist Drs prescribe always check yourself. Be on your toes people and carers of people who unfortunally are dependent on others to aid them. Best wishes to all xx
Antibiotics : Please be aware - be your... - British Liver Trust
Antibiotics
Wow! But I thought the majority of us transplantees were on it (advagraf, prograf). I know gps have to have knowledge of lots of conditions and drugs but not to be aware a patient has one of the leading immunosupresseurs is shocking.
I’m in France and the only thing I have had with some health professionals (not gp!) is they assume I need it twice daily rather than once (advagraf).
Denise,
You are absolutely right.
As you say, not only do we need to be aware of side effects and compatibilities with other medication, we also need to check that the drug is exactly as prescribed. For example, With Tacrolimus ( Adoport / Prograf etc ) the drug must be the brand prescribed. ( see link below )
I had a problem with my medication being prescribed correctly but dispensed with the right brand but the wrong dose. As we know, the levels of medication / blood concentrations are extremely important. Luckily, I noticed the difference between the two strengths despite them both being capsules with similar colours. Had I been unaware or with poor eyesight, my team could have been a bit confused as to why the blood levels were strange.
The pharmacy have now changed how the meds are stored, they are in different parts of the pharmacy so the two can never be confused.
Anyone interested in a helpful and authorative source of medicines information, together with the warning about changes to Tacrolimus, I've put links at the bottom of this reply.
As patients we all need to have control of our condition and treatment, we work in partnership with our health providers and in our case, transplant team.
Jim
Sadly this is so very true Denise. I have experienced a very similar situation. Normally a transplant centre will write to a GP and explain about the procedure you've had, and a list of medication that you are now taking. This list should also be available on your discharge letter from the hospital. This information should then be inputted onto your local Healthcare Trusts computer system. In my case. when my liver began to pack up, I developed type 2 diabetes. This was prescribed Glipizide by a diabetic nurse, when I asked why I had started to get diabetes just out of the blue, I was told, "Oh it's your pancreas not making enough insulin". In actual fact it was that my liver had now become insulin resistant. After taking Glipizide for a good three months I notice after reading online, that under the manufacturers health warning, "NOT TO BE TAKEN IF YOU SUFFER FROM ANY LIVER OR KIDNEY ISSUES".
One of the big downfalls of our NHS is that all these different trusts, have their own computer systems and so can't share information so readily. This is also partly due to the data protection act, as all the information that was held by your transplant centre remains the property of that trust, and they have a duty of care as to what they do with that information. In my case for example, My local healthcare trust is North Staffordshire, and my transplant was carried out at the QE, (University Hospital Birmingham, NHS Foundation Trust). Now, I can logon to the QE's system using their "myhealth@qehb". Here I can see all my blood results, letters to and from other doctors, blood pressure, everything. But my GP can't see any of this, nor can my local hospital.
Back in 2002 with an initial budget of some £6.2 billion, UK’s National Programme for IT (NPfIT), this was to implement a top-down digitization of healthcare in England’s National Health Service (NHS). Fast forward to 2011 and the whole thing was scrapped due to both a massive over spend, and having various computer systems not being compatible with each other. I really don't know where this is all going to lead, but the system just isn't geared for the 21st century.
I was employed as a therapist in an NHS trust and worked for 36 years. I have to say the computer systems never spoke each other across trusts and if you wanted to share information with people or social services you might as well give up!! Sad to say I don’t think we will ever see this happen that’s why the person needs to be so vigilant. Help for those not able to question or challenge services is just not available unless you have a diligent carer or relative. It’s all a bit distressing 😗😗 also not in the least surprised about the constant overspend and sometimes so shortsightedness
Hi
Firmly agree with you
We had to ask gp surgery to put a note at the beginning of computerised notes
Warning he is a transplant patient on immunosuppressants.
When u cant see the same gp each time it takes so long to go through everything it can be missed.
Treatment offered for my HCV 
6months
Post Liver Transplant - MASLD (Fatty Liver Disease)
new onset neuropathy 
A little note to all that includes the trust.
