Do it yourself

Not heard a peep from Leeds since my appointment on Tuesday so had to take matters into my own hands and ring my local consultant yesterday. I explained I was full of fluid again and desperately need a drain as it is restricting me, no appetite, effecting my breathing and I can't even get up my stairs now.

An hour after I spoke to him I received a call and I am booked in for Monday omg I can't wait, be able to try and get back to normal, it pays to mither lol 😁

21 Replies

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  • Sounds like you have an awesome consultant. Hope Monday goes well.

  • He awesome seen me from day one and saved my life twice, looking forward to seeing him as not seen him since I had transplant x

  • Sounds like my local GP she was awesome, has always done right by me and have always felt she actually took a concerned interest in me unlike many GPs (not their fault I know) where you feel rushed to say your bit and go. She actually encouraged me to come back to see her just to let her know how I'm doing. Bless.

  • It's all you need to feel like one of the professionals has got your back and best interests at heart and you can be at ease.

  • Yep, you have to take things into your own hands sometimes. Unfortunately the NHS is not as slick as we'd like to think, and it's easy to slip between the cracks, and not be chased up after an appointment.

    It is really helpful when you have a consultant or even nurse that you can refer to and knows your case really well and can sort these things out. Just leaving a message at a reception can feel and more often than should be the case gets you knowhere too.

  • Oh I hear you but just thought Leeds would of been a little more on the ball, but I live and learn. X

  • who you under huni? X

  • I see someone different everytime I go never been under one particular consultant

  • I was like that in the beginning. It's difficult when you see different ones. I got confused being told different things. Glad you are sorted. Good on you for doing it yourself!! πŸ‘πŸ»πŸ‘πŸ» xx

  • Nowt wrong with mithering i do it all the time. NHS are very busy and we are just a little spoke in the wheel and its always best to remind them now and again who we are. Good luck for Monday and i hope you get it all sorted out. Who is your consultant at Leeds? I know Dr Hildalgo did my transplant but after i think i saw most of them. All very good. Xxxx 😁

  • I'm under Leeds too. Can't remember the name of my surgeon he was lovely though. Italian maybe haven't seen him since. Usually dr claridge now who I hated on the ward. Felt bullied & intimidated by him but now he's brilliant. Kept telling me I would never get home coz I could've eat and meds were too high but was determined to prove him wrong and I did. Was out in 14 days. 8 was in icu though xx

  • Yeah i saw Dr Claridge too he was great i no longer see him now as have been moved to the Friday clinic in Lincoln wing. Its luck of the draw who you see there but it is under Dr Alderslys team. They are all very good though its been 3 and half years since my transplant but still going every three months!!!. Stay strong 😊

  • I remember my doctor had to go on maternity leave with twins. She was hoping I would have had my transplant before she went off. I haven't seen her yet. She will be due bk soon.. Can't fault Dr Claridge now he's fantastic. πŸ‘πŸ»πŸ‘πŸ»

  • Was that Dr Phedora Tactatzis (spelling??) i saw her a lot too both before and after my transplant she was really great. Im back for a check up beginning of Feb so will ask how she is doing. All the best. Xx

  • Hi and no it wasn't I have seen her though she was one who signed me up on list. But she went on maternity leave then not seen her since.

  • that's her yes. Dr tic tac I used to think she was called lol xx

  • Sounds like a lot of people go to Leeds? That'll be my transplant centre after I move north.

    Was just wondering hearing all this if I should give Kings a call? Had my first visit with them just before Christmas but haven't had anything back from them? Wasn't really expecting a call but they took a load of bloods so even just to get the results of them might be worthwhile?

    Am due to go back to see them end of March. Do you think it's worthwhile me bothering them or leave them be?

  • Chase it up, politely. Sometimes things do get mislaid or not followed up and if you just wait quietly and patiently you may find you are waiting for an appointment that hasn't even been requested.

    We waited 8 weeks for a follow up appointment (& biopsy result) when hubby was discharged from hospital after first presentation - not scheduled till I chased it up. Also waited Jan 2013 to June 2013 for transplant clinic to see us as doctor told us he'd referred hubby to transplant unit in the January only to find doctor had gone off sick himself and no referral was done. Just not long ago we were waiting for 6 month ultrasound scan which I chased up after the 6 months were up and I found out it wasn't requested either.

    We no longer wait too long, we chase everything up if it hasn't appeared in what seems like a reasonable time frame.

    Hubbies latest clinic appointment for February was cancelled way back in November with no hint of when new one would be scheduled - he's gone from 5 weekly appointments to 6 monthly and it was worrying that they'd cancelled and not rearranged so again another 'chase up' letter sent and appointment soon reschedule - actually for an earlier date than we were due to attend.

    You have to take ownership of your condition, if you don't encourage things along sometimes you'll find they don't happen.

    All the best to you, Katie

  • So very true Katie ! I can relate to that myself . I too had to take matters in to my own hands last November and December . Finally got my first ever appointment at the QE liver unit in Birmingham on 28 February . My last LFT was good apart from my vitamin D was very very low , so now on intense course of meds for that . Hope hubby is still doing ok ! . Best wishes. Linda X

  • Great advice Katie, taking ownership says it perfectly..!!

  • Too true I have this true

    Make sure you are not forgotten

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