British Liver Trust
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Stressed

This might sound trivial im 7months post LTX ive just been discharged from hospital im now aneamic and have got inflamation around the liver they also told me theirs fluid and a pocket of blood their too. Before rhis happened ive been having problems with my dr and the receptionist he put my prescription to collect weekly because my medication changes quiet often. Im having to travel to the drs about 3 or 4 times a week theirs always a problem for instance i need 70 Adoport for the week but the pharmacy can only give out 50 or100 because of the packaging but my dr only prescribes 50 at a tim. I have spoken to the receptionist about this many times but still not changed so that means i have to pick them up every 5 days and the rest of the prescription every 7 days. Also most of the time the pharmacist will tell me they need to order my Adoport because they are expensive and dont keep them in stock even although i go to them every week. I am so stressed and get really angry i just can't cope with the pressure but dont no what to do anymore. Has anybody got any advise about this.xx

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Inform your consultant at transplant hospital. My doctor can't prescribe my antirejection so I have them delivered directly to my door every 2 months.

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really Jo? I know my doc & Leeds had to have a shared care agreement regarding my gp prescribing anti rejection drugs. It was just a piece of paper but didn't have a problem with it. Some docs won't do it because of their budgets. I also remember Leeds telling me that too. i had to get them from clinic for the first 3 months but then pharmacy & my surgery sorted it for me. Your doc may start supplying them soon, when your appointments get further apart 👍🏻 xx

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Nope my doctors definitely won't do. I know a few from Leeds who gets them delivered directly it's from lloyds pharmacy I get a phone call every 6 weeks or so asking how many I have and give me a delivery date and time.

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jojo is right. Spk to your consultant. My pharmacy used to have to have the prescription before they could get it in for me which meant a few days wait. Now they always have my advagraf in for me. Hope you get it sorted as it does sound stressful xx

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Hi, try not to stress too much. As for meds I have no problem, I usually leave mine to I have 7 days left then reorder. Sounds like a communication between you consultant and your GP problem.

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Hi

We had the same problem after a couple of years we suddenly received a copy of a letter from the transplant unit to GP.

It said that they would as requested now prescribe Mike's Advagraf.

We knew nothing about this and contacted the hospital and then the GP. We were told that the Surgery had had a check and been told that they were not prescribe Advagraf it had to come from the transplant unit because of the cost. Fair enough but nobody had told us we had to chase this up ourselves. At his next appointment we told the consultant and they were shocked at this. But now they give him a six month script at each appointment., which we have to take to our local pharmacy. Yes there usually is a stock problem as it is rarely prescribed and expensive so it is only ordered when requested.

So it seems this is going across the country as we are in Surrey

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Although I've not had my transplant yet I still struggle getting the mess I'm currently on from my Chemist. I don't think I've been able to go in and pick them up once without there being one issue or another. They either haven't got them in, need to special order them or seem to have just lost them.

It's incredibly frustrating.

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I have my adaport and aza delivered as my go will not px them.

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Yes contact your T/P coordinator they can prescribe them for you it happened to me so I no how frustrating it is. As if we're not well enough we can do without that stress.

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If I have no appointment due at the hospital, I phone the transplant coordinators. They speak to the pharmacy and they send me a prescription for a 3 months supply of Advagraf ( tacrolimus). My GP won't prescribe them either because of the cost

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