Assessment at the Royal Free, etc

[Mufan99]

At the start of this week my partner had his transplant assessment at the Royal Free. It was a really positive experience. Because we came from Bristol we stayed in the on-site hotel, which is great! There was a lot of waiting for tests and for the medics to be available. I couldn't stay on the unit with my partner but they dialled me in to conversations that I needed to be involved in. The whole team from hotel reception on arrival to the senior consultants during the process could not have been kinder. We got the outcome on Friday and he's not going on the list yet, but will be monitored more closely over the next year for any signs of deterioration. I am sure we aren't the only ones to feel simultaneously relieved and disappointed by this kind of result!!! How bizarre is it to actually want someone to have a long, fairly risky operation?

I have a two or three questions if I may. My partner was taken off omeprazole because of ascites (which is much improved) but now has constant heartburn and the replacement antacid Famotidine just isn't doing the job. We'll talk to the hepatology team, but any suggestions from your experiences very welcome.

The same query regarding the high protein, high carb diet he is now following, which is playing havoc with his diabetes, which was pretty much under control until a couple of weeks ago.

And finally... one of the positives from the assessment was that the consultant told us that there is no medical reason why we should not travel by aircraft for a holiday (notwithstanding Covid-19, etc). Can anyone recommend an insurer who might consider covering a traveller, with cirrhosis and a recent history of banding, for short haul travel in Europe e.g France or Spain.

I am more than happy to share more about the assessment with anyone who has it coming up and is feeling anxious.

Hope you are enjoying this chilly, but very sunny weekend

Andy

[Lils2019]

Hi Andy,Glad all went well.

As it happens I am hopefully taking my husband into the QEB, later this afternoon if they have a bed for him.

I am assuming it’s for his assessment, the letter was vague, and when I rang the staff didn’t know either, however it was discussed at his outpatient appointment on the 8th that he would be going in, as an inpatient, within the next 4-6 weeks, purely because of the distance from home. He had bloods done at outpatients so unsure if they have found anything, he’s had abnormal bloods since Oct 2020 though.

I think I am more nervous than he is, I have all his bag packed, all his medication packed and made sure he has his phone and our daughter has very kindly lent him, her iPad.

I’ve been super stressed out this morning, and I think I will be until he’s back home.

I don’t think it’s something you can prepare for, but sort of just go with the flow, so to speak.

Take care x

[Mufan99 in reply to Lils2019]

I hope it all goes well for both of you. If it for an assessment there will be several scans and tests, over two or three days. If you can have as much medical history to hand as possible it will be useful as the hospital cannot always access all the records. I pretty much know ours from memory but it doesn't hurt to make some notes.

[Ewife]

Hello, it is a funny mixed emotion that goes with transplant. It's like your brain doesn't know what to think. Recently I've felt quite desperate for the transplant to happen (husband been waiting a while now) but I feel like I shouldn't be wanting to hurry up such a risky scary operation. Settle back and try to enjoy the ride 🎢 It definately makes our family appreciate the good days, and the happy memories we make together.

[Hidden]

With regard to travel insurance I have attached a link from our website re insurers - Please be aware the British Liver Trust does not endorse any of these companies, simply they have approached the charity and suggested they will aim to provide cover for people with liver disease.

britishlivertrust.org.uk/in...

Trust9

[Aotea2012]

I managed to get travel insurance with Avanti. More expensive than normal insurance but still a good price.

[Roy1955]

A year's cover with Saga was cheaper than most single trip policies from other companies so check that option as well.

[Rshc]

hi, sorry to post on an old thread but my partner is also being referred to the Royal Free via Bristol Liver Unit and we are going in August. I wondered how you are both doing now ?

[Mufan99 in reply to Rshc]

We are doing OK, but we have had some ups and downs. At the end of April my partner had a nasty virus (not certain if it was Covid or something else) but loss of appetite and exhaustion were the symptoms. That resulted in him being admitted to hospital to have emergency feeding through a nasal tube to replenish his depleted nutrition. He stayed in for a fortnight and is now home and getting back to normal, but has had to stop the diuretics because the kidneys were not coping too well. We will gradually reintroduce them with weekly blood tests to check the kidney function.

We met with the Bristol team and a doctor from the Royal Free last week and the consensus is that a transplant is not suitable anymore because it risks harming the kidneys too much. We are now having tests in Bristol to see if a TIPS procedure would be a suitable treatment. We understand why that is now the right route under the circumstances since the last assessment.

I think you will find the assessment a really positive experience although there is a lot of waiting around if the majority of the tests have been done in Bristol already. Personally I spent the mornings sightseeing e.g. tube to visit the British Museum and a walk around Hampstead Heath. I then came back to our room in the afternoon to be available for a phone call with the assessment team to discuss any questions or clarifications that had come up. If you are both fairly fit the walk from the Royal Free into Hampstead is very pleasant in the evening and there are really nice places to eat in the vicinity. You won't know the result of the assessment straight away, there will be a joint meeting of the assessment team at the end of the week and you will be called to discuss the outcome.

I wish you both all the very best for a result that works well for you.

[Rshc in reply to Mufan99]

so you would have probably been at the BRI at the same time as us this week. I am so sorry to hear of all the struggles you have been having. My partner has had some issues with diuretics as well and is on a very narrow tightrope between enough to keep the fluid off (he was very very poorly in May with fluid everywhere) and managing his sodium which drops very quickly. I hope TIPS provides some solutions to symptoms. Take care