Insistent Consultant

[Gfdee]

My consultant has phoned me regularly. I admit my bilirubin raised to 70 after 3 consecutive viruses, it is now back down to 65. In 2005 my bilirubin rose to 89 and I wad proper sick. I was put on immunosuppressants for 10 years . Then one year ago i was told to come off them so i went from bilirubin if 13 to 70. Does not common sense say, stay on cellcept? Keep the lady safe? I have asked and asked the questions. It cannot possibly be cost ss a transplant cidts much more and far more deserving folk that cannit be controlled meducally may need it. It is confusing. I am 62 loving life, active, but concerned.

[Saintgeorge]

Hi, if as you say... You are loving life then best to.... Enjoy. Hopefully with the meds in time bilirubin will decrease, I would say if you have an unwell episode get onto 111 and they will advise or get you down to a and e. Otherwise enjoy each day. Worry is the enemy. Wishing you all the best.

[Hidden]

Hi gfd

Sorry but I cannot understand your post at all. ☹️

Your consultant phones you - and regularly? You are indeed very lucky, generally if you get to speak to their secretary you are lucky!

What does he phone you about?

What do you tell him/her?

Have you had a transplant - presume so since you are on immunosuppressants?

What are you wanting to happen?

I’m totally confused - I know that’s not too unusual for me but this time I don’t think its brain fog.

Seriously - good luck in achieving getting what you want.

Miles

🇧🇧

[mrsmerlin in reply to Hidden]

There has been no transplant as 5 days ago when she joined there was a post about having all of the tests within the last week yet going for a reassessment 170 miles away from Kings. Certainly an unusual way round of doing things from the posts that I have read. I thought they had to be done at the tx centre - can you have them done locally? I'm not at that point yet, just gathering information.

Have to say I would certainly have stuck it out for a closer centre as I have never heard of anyone going past one centre to get to another for a transplant - I would seriously look into that for a start if i were you.

I am also confused by your post. I'm not meaning anything bad but it seems highly unusual. May I ask at which hospital your consultant is based?

Rita x