Assessment Started

[Bs1524]

Just thought ai would let you know we have first appointment at Queens Medical Centre another appointment for the 7th September and a letter today stating we will be receiving further appointment culminating in meeting the teams from Addenbrookes and Nottingham on 29th September. So a lot happening.

[Laura009]

Great new Pam. Best of luck 👍

[Bs1524 in reply to Laura009]

Hi Laura, this is the first of many I guess at least I will be familiar with getting to Queens Medical Centre. I need to drive the route to Cambridge 😀

[Laura009 in reply to Bs1524]

Where are you driving from?

[Bs1524 in reply to Laura009]

From Lincoln well I between Lincoln, Grantham and Sleaford I call it the Twilight Zone

[JaneAnderson1966 in reply to Bs1524]

Hi Laura

I see you are from Lincoln. I too am from Lincoln and my condition (PBC/autoimmune hepatitis) is being managed at QMC. The staff there are brilliant and I have found that, even during the pandemic, I have had excellent communications regarding my treatment. I even had a trans-jugular liver biopsy done at the Spire private hospital near Nottingham as it was Covid free. My specialist is Prof Steven Ryder although I am sometimes seen by Dr James.

If you have to travel to Cambridge, just beware that there were a lot of delays on the road in due to extensive road works (A14 I think). Perhaps the roadworks are complete now. Have travelled there are a lot (not to hospital) and can usually do the trip in around 2 hours 10 mins. The Park and Ride is pretty good there too as the city centre is mainly one way and parking is really expensive.

Anyway, good luck.

Kind regards

Jane

[Bs1524 in reply to JaneAnderson1966]

Thanks for this, good info. I did end up speaking to a chap in the pharmacy at Grantham Hospital who had his transplant at Addenbrookes and he said there is parking available. It has been a long time since I have been into the centre of Cambridge I recall vast numbers of students on bikes going the wrong way along one way streets 😀

Thanks again

Pam

[Hidden]

Great News, Lets pray its the start of the journey to recovery

David

[Bs1524 in reply to Hidden]

I do hope so at the moment he is like a bear with a sore head.

[Hidden]

Good luck Pam, keep us posted.

[Bs1524 in reply to Hidden]

Will do

[mattymoo33]

Hiya. I've been there and it is a little overwhelming. The Addenbrookes team are nice. I'm sure there will be familiar faces in the room. I think there were about 10 when I had mine, but perhaps fewer at the moment.

I wish you the best of luck 😃

[Bs1524]

Thank you, first appointment tomorrow has been moved to 16.50 due to staff shortages caused by sickness. I am hoping we don’t get stuck in too much traffic coming home. The assessment appointments are at Queens Medical in Nottingham. Not sure when we or if we go to Cambridge. I need to check out the route it has been a long time since I have been in Cambridge.

[Hidden in reply to Bs1524]

Your assessment will be in the Gateway centre at the hospital. The best way is by train to Nottingham then take the Tram this will drop you outside the Gateway centre on the correct floor level. Best of luck they are a marvelous team.

[Bs1524 in reply to Hidden]

Hi, I drove in the end my Kevin wasn’t up to travelling any other way. This appointment was for an for an echocardiogram in the West Block. The next one well the next one so far is for a lung function test I am guessing others will be coming through. I need to allow more time it took him twenty minutes to walk from car park one to the main entrance or I might try to get a wheelchair, he needs new knees but they have taken a back seat..

[Hidden in reply to Bs1524]

Hope all goes well for you. It seems a long process but they are making sure Kevin will be fit enough for the operation. I began to feel as though all the tests would never end. If you need a wheelchair get in touch with your doctor and they can arrange a long term loan through the red cross for free. I had my transplant at Addenbrookes last Christmas, the support and help you receive is brilliant. Any questions you have feel free to ask.

All the best.

[alfredthegreat]

Hi Pam.

Be prepared for some holdups on the way back due to the work going on at the Clifton Bridge. We wnt to Queens Med a week ago. The hold up wasn't too bad for us as we left for home at 3.30 but I would imagine it could be more of a hold up nearer to tea time

[Bs1524 in reply to alfredthegreat]

Thanks for the heads up I had forgotten about Clifton Bridge ☹️ I had considered taking the train from Newark Castle and getting a taxi from Nottingham Station that way we would have access to toilets but He doesn’t feel up to that so that’s why I am driving. I was going to leave early as I am not entirely sure of where I am going and also parking at the hospital I think at this rate I will be setting out at lunchtime just in case😀

[alfredthegreat]

Also don't rely on the cafe at the treatment centre to get a drink as it closes at 3pm but there was coffee on offer when we went through to the inside waiting room where the weighing and BP test takes place.

Hope all goes well,

Alf

[Bs1524 in reply to alfredthegreat]

Thanks again for the heads up I was going to take water with us depending on traffic and what time we get out we may kick our heels for a bit as we done want to be stuck in traffic and he needs the loo as you know when you gotta go you gotta go. I am hoping that traffic levels are not ack to pre Covid 19, fingers crossed.

[FlyingArrow]

Good Luck for today Pam! My fingers shall be tightly crossed for no traffic hold ups!

Love

FlyingArrow x

[Bs1524 in reply to FlyingArrow]

Thank you so much x

[FlyingArrow]

😘🏹

[Bs1524 in reply to FlyingArrow]

Well it rained all the way there and all the way back all went well apart from at one large roundabout I ended up at the wrong lights and had to go round again and then I must have wavered a bit and a very nice man in a pick up type thing showed me how load his horn is and then waved at me 🙄

[FlyingArrow]

I'm happy that you both arrived home OK in the end!

🏹x

[Lam1e]

That is great news👍

Does your husband have a Liver Nurse Co-ordinated that could perhaps help? In my area the assessment was done over 2 days which saved so much time and energy, especially when you are not feeling well! The Specialist Nurse arranged it all and I know from other people’s experiences it was the same for them. The nurse also arranged reasonably priced accommodations near by for people that had a distance to travel! I understand every area is different, but it might be worth asking.

Thd 2nd part of my assessment was at King’s as that is our transplant centre! That was over 3 days, I was admitted to the ward for that but again, the Social Worker arranged accommodation for family.

Hope it all goes well for you both🙏

Lesley

[Bs1524 in reply to Lam1e]

Hi Lesley

Well he has three nurse specialists now but I think with Covid it has been difficult for,them to organise the tests close together she had hoped to do it over one day two at the most but so far we have had two tests on two different days and I guess there are more to come. Hopefully my work will be ok with me disappearing at short notice as she mentioned a meet the teams on the 29th September.

As I understand it if he makes the list then it would be Cambridge for the transplant in which case I am going to carry out a recce drive so I know where I am going.

Pam

[alfredthegreat in reply to Bs1524]

Hi Pam.

It sounds like your work up tests are being done in the Notts area like mine were. Mine took just over a week. At the end of all the tests done locally my wife and I then spent 2 days at Addenbrookes (accomodation provided free on the hospital site). You get to meet all the medical staff individually that are involved in the transplant, from the surgeon, anaesthetist,right through to nutritionist. I think that we saw about a dozen people in all. They will explain their part in the operation and aftercare etc.

They were all lovely caring people and I cannot praise them highly enough.

There will usually be blood tests etc so they know right up to the minute how you are doing healthwise.

The first day was a very busy day and we went home about lunchtime on the 2nd day.

Then you will hear about 2 days later in a phone call if your hubby is on the list. If he is accepted on the list you will recieve all the paperwork to sign through the post.

I'll warn you that my paperwork took over a week to reach me. Although they had phoned and told me that I was accepted on the list it was still an anxious time witing for that paperwork to drop through the letter box. Thought I'd just mention that to stop you going through any worries that perhaps they've forgotton or even changed their minds (as if!) but the mind can come up with all sorts of possibilities when you are feeling stressed.

When I recieved my paperwork, I read it, signed it and I sent it staight back that day through registered post. That shows you how anxious I was

I was only 10 weeks on the transplant list and was transplanted at the first call.

I realise now that I was stressing myself out needlessly Hindsight is a wonderful thing!

Wishing you and your hubby all the very best and everything is crossed for you here.

Alf

[Bs1524 in reply to alfredthegreat]

Thanks for this my husband is a bag of nerves he is terrified he won’t make the list. I don’t honestly know what to say to him, would they explain why if he doesn’t?

[alfredthegreat in reply to Bs1524]

If he didn't make the list for any reason it would be explained very thouroughly why not. He's in a very stressful place right now as I know only too well.

Tell him that all these test that he's having for work up and all the time the transplant team will spend talking to him and explaining everything to him comes at a huge cost to the NHS. They don't take all that time and effort to easily turn anyone down. He has been put forward for assessment because in their opinion he is a suitable candidate for transplant. They want to make his life better for him and they would only turn him down if they thought that a transplant wouldn't improve his quality of life.

Hope that helps Pam.

[Bs1524]

It really does thank you so much x

[Hidden]

Hi, the response from Alfredthegreat is exactly how it happens, the only difference is we actually drove down to Addenbrookes to return the signed documents. As put in the previous reply they only refer you if you are a suitable candidate for a transplant. The team are great and will answer any questions you have.

I hope all goes well for your hubby and yourself.

[Bs1524]

Thank for your encouraging words x

[Laura009]

Good luck to you both

Lx