My current hepatologist is brilliant but unfortunately have been waiting patiently for said MRI scan which should have been done inititally, does it really take 3 weeks to get one done especially red alert.Also nurse said she was going to phone me and still waiting patiently looking at my phone and checking home phone. I have left message on the admin phone but as usual no reply. In the meantime I researched over the weekend and found a surgeon which was printed in The Times and so I contacted him and he said come up yesterday, but being as I have a young daughter could not attend and so his secretary is going to sort out a time. He wants the Hepatologists name that I am under - but how do I approach this with current one, I asked my GP last week who said ask the nurse but I have left messages and no one come back. Additionally when I had my spleen taken out a few years ago I was told that the surgeon was brilliant etc and I ended up in hospital for 4 weeks as he had pierced pancreas and also his personality was zero. So as you can gather I have no trust hence me seeking alternative. My hubby fuming and everyone on edge.
Thank goodness for this site, one can let off steam!!!!
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daisy11
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This should not happen in any hospital, I think I waited one week. As I said before, I had all my tests done within a month. Phone the secretary. Put the heptologist name on the computer, it may give his email address anyway. Also, phone the MRI Department. You will need your Hospital No. Tell them you are worried that the letter might have got lost in the post because your Heptologist put the request as urgent. I do not think you are waiting for three weeks, I think this is an clerical error. Also phone the nurse. Ask her if she remembers you and tell her that she promised to phone you. I push for everything. Today if I wanted something done NOW I would not stop at anything. Remember you are NOT being a nuisance. If your heptologist is brilliant (mine is) - mine sees me anytime I request without an appointment! you should stick with him. I am in London. I was lucky I had the top surgeon and I did not have to push! Letting off steam is one way to deal with the situation - cyber hugs to you. As soon as you read this, please do as I suggest.
Hi thanks for replying, I am going to phone MRI department as soon as post arrives just incase there is any post from them. Secondly just heard from surgeon in London, they are so quick, cannot believe it they want CT and MRI scans digitly sent, well its like getting blood out of stone here, even copy letters are hard to come by unless you ask. What hospital do you go to - as the surgeon whom I contacted is top surgeon. Don't worry if you cannot say but just to know would be great help. I know that the hospital here converses with Kings, also a couple of years ago my GP wrote to Hep here and asked if I could be seen elsewhere and got no reply, I did not take forward as did not have the energy but this time around well I am its my body and I want the best.
Daisy my Gastroenterologist is a Heptologist at a hospital and he transferred me to 'you said the name.' I am abroad at moment and computer needs recharging battery and as it is 02.00 abroad I will wish you goodnight. Speak later.
Tatjana is right, you have to push push push. Not wait wait wait.
Its good that the surgeon in London has set the ball rolling so quickly. Hopefully his secretary will ask your consulants secretary to arrange for the digital copies of the scan. But just to be sure, keep reminding both parties that these are to be sent to London asap. Hopefully the 2 computer systems will be compatible. Unfortunately my 3 different hospitals that look after me are on different NHS computer systems and cant send image files between them, isn't it silly.
Tatjana is right, if there is any possibility that what you have is cancer, you should be fast tracked. I went to my GP on 2nd August 2010 and had an MRI by the 24th and surgery the following month, no dilly dallying or messing about.
When I was worried about offending my gastroenterlogist by asking to be referred on to a hepatologist I spoke to a friend of mine who is a nurse. She said, go for it, all consultants have thick skins and are used to patients asking for second opinions.
Are you worried you will lose your care from the current specialist if you go to see this London surgeon?
Mine was done and dusted within thd week from ultrasound scan to MRI then a about 2 weeks later refered to Birmingham. Now just waiting for assessment for a transplant on monday and I should know within a couple of weeks. Some of it is a waiting game which there is no denying is hard but I found that when they do suspect something things move quite fast. Im trying to thi k of the waiting parts as training for the wait for a liver, hopefully. Its so difficult and must be worrying with having young children, its bad enough when they are all young adults. Hang on in there they are fighting in your corner, I know it must be difficult to always think that given past experiences. I so hope it goes well for you take care. Warmest wishes. Joy
Just to say I heard from my Hep to say HCC and he wants me in next Tuesday for embolization and then transplant. I am in shock and I just do not know what to think. Can I trust this radiologist? As he was the one who said he could not do TIPPS but the Hep said he was okay. They have a slot for next Tuesday otherwise long wait. I am still considering other treatments which I have found out about.
If you have been offered TACE for this 2cm tumour within the next few days, I think you will have to be brave and take this option. HCC tumours have a fast doubling time, and if yours has been confirmed as one, you don't want to hang about humming and hawing about what to do. At 2cm its already too big for resection to be an option for most surgeons.
How do you know which radiologist is doing the procedure? If its someone you don't trust, then yes maybe ask for the procedure to be done elsewhere, but you don't have much time to be chopping and changing now. I would have the TACE done and then while you are recovering carry on with your second opinion research. The TACE will give you time, but it isn't a cure. You will probably need a few procedures to keep things at bay until you are assessed for Tp, so after this initial zapping of the tumour is out of the way, then is the time to carry on with maybe moving to a different hospital/medical team.
Is the hospital where you will have this procedure a local hospital or is it a tertiary specialist centre?
Hi they was going to do it Tuesday but now its the following week which is driving me mad. I was going to do what you suggested and whilst its been done then look at alternatives. Apparently there was a cancellation and then my doctor in London who looks after blood side contacted them they put it back to the following week
Hi daisy. Sympathy and hugs coming your way to get you through this awful waiting period. Has your London doctor kept you in the loop of why the treatment has been delayed. You say he looks after your blood results - could it be that there is a problem with your platelets or clotting and they want that to improve before they do the procedure? Are you being told what your platelet levels and clotting time are?
Did you have TACE? My London doctor deals with the clotting side and I spoke to her about having this done as she has not been informed by hospital here and she asked me to get the hept to phone her, she told me to stop the warfarin and go on heparin, which I think has confused them here also my splenectomy of two years ago, I was taking antibiotics and told not to as kept on making me sick so I have standby ones should I develop a cough but the nurse here did not know about this and said that is what she has to sort out as there is a high risk of infection.
Hi daisy no I had a resection but I know 3 people who have had TACE. Gosh your different medics sound in a bit of a muddle about what meds you should or should not be on. Someone needs to make a clear decision and tell you what to do before the procedure next week. Bang their heads together and get them organised, lol!!
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