Advice sought re timescales and travelling

[weavergirl]

Hi Folks - Abnormal LFTS, incessant fatigue and the presence of AMAs has resulted in referral to Leeds Liver Unit, presumably to be furnished with a PBC diagnosis. They've just cancelled my appointment with the general clinic in mid-Jan and a new appointment is to be set up with the Immune Hepatology clinic in February. The problem is I am supposed to be going travelling across Europe and the States for a couple of months at the end of Feb. After folk had their initial appointments, was there a lot of follow up tests and monitoring? I am unsure whether I should delay my travels for a couple of months or longer, or forge ahead booking my travel, accommodation and meetings. I have tried ringing the liver unit for advice, but understandably no one is around at the mo. I would welcome any insight into how things unfurled for you!

[Hidden]

Hello chrissiefreeth.

Sorry to read your pending hospital appointment was cancelled. Been there back in 2010 when my first hospital appointment was altered by the hepatology dept and put back 2 weeks. I had 13 weeks total to wait before my first appointment came round and I'd started itching (intensely) early 2010 and been going to and from the GP at intervals for various blood checks and then had a scan before I was referred to hospital. I didn't have the AMAs (antibodies) test until my first hospital appointment and then had a further 6 weeks to wait for the GP to contact me to relay information from the consultant that I'd PBC and for him to prescribe urso that is used in PBC.

I can't really say for sure how your first appointment will go at Leeds as you've already had the AMAs test. Seems we are all different with how we get to be diagnosed with PBC.

Regardless, PBC is said to be slow progressing and I feel that if your blood checks were excessively high as over normal range then you'd probably have been seen earlier. This is how I thought late 2010 after the long wait to see a doctor at the hospital. My bloods were slowly rising during 2010 at rechecks at intervals (though for some reason in the 13 weeks I waited for the hospital appointment that day mine were seen to have dropped naturally even if still over the normal range and I'd no medications nor was I on for anything in 2010.

Thinking, what I think I might do would be to attend the appointment and then take it from there. It could well be that your consultant is confident that you have PBC and might prescribe the urso at the time. I didn't have any further blood checks for around 8 weeks after starting the urso early December 2010 (had at my 2nd hospital appointment following diagnosis).

The other option would be to keep ringing the hospital dept and state that you have an out of the country break scheduled with the rough or exact date and then ask if you could perhaps be added to a list (if they do them) to attend for anyone who has cancelled an appointment.

[weavergirl in reply to Hidden]

Sage advice - thanks so much, and useful to hear about your experience - thanks again!

[GrittyReads]

You would need to inform your travel insurers about the PBC, and if you were awaiting tests, or test results they are unlikely to cover you - although they might cover you generally, but excluding the PBC. However, if you don't tell them and you need to claim for anything else, while away, you won't be covered for anything at all ... as almost all TI companies now, will not cover 'anything' if you have omitted to tell them 'everything'.

On a brighter side, when I was seen at a major liver/PBC unit in a city hospital, I had blood tests, ultrasound and general check before I saw the Consultant, and he had the results when I saw him and he was able to tell me my situation, there and then - having said that, not all cases may be so clear cut.

I would leave booking the trip until you have more info, although it might be worth talking to your TI people first. If you have PBC, it will put your premium up, but I wouldn't want to be in the States without cover. If it is absolutely PBC, you might also need time to adjust to medication. Sorry if this seems harsh, PBC can be perfectly manageable and most people live a full and healthy life nowadays once on urso - and other treatments are coming through.

So, I would wait until you know more before booking, but I would also follow Peridot's idea of phoning the hospital and trying to get an earlier appt.

Hope this helps.

[weavergirl in reply to GrittyReads]

Not harsh at all – very useful in fact! I do need to talk to the organisation who is enabling me to go travelling, they have funded hundreds of people a year for decades, and illness or disability has never been a barrier so I am assuming they will know where to go with regards to insurance. But I do need to let them know sooner rather than later, and I am sure they will be flexible, but you never know they might have a view with regards to all this. I also keep forgetting about the anti-gastric parietal antibodies also present which presumably might need checking out.

I think I have made the decision that mentally I am going to get ready to go at the end of Feb, but leave off booking everything until I know more, til the last minute if need be, and be prepared to pull it if I have to, and do as suggested and try to get an earlier appointment.

Thanks so much for your input!

[GrittyReads in reply to weavergirl]

No problems and thanks for your thanks!

I do hope you manage to go travelling, and that all turns out well with the consultant. Meanwhile, try to avoid stress and keep upbeat, spoil and coddle yourself and do all the things you love. stress is the worst things for autoimmune conditions, so chill out and have fun - best way to deal with any beastly illness. Good luck and HNY!

[weavergirl]

Just wanted to say thanks again - I rang as suggested and explained the situation and they are squeezing me in tomorrow, I cannot tell you how relieved I am at the thought of knowing where I am at with everything! Thank you!