Not Good News

[Bs1524]

Addenbrookes have called and they are not willing to go ahead due to the condition of Kevin’s artery they have advised us to go for a second opinion which we have agreed to.

[Laura009]

Good luck Pam. Stay calm and think positive. You have lots of suport here. L xx

[Bs1524 in reply to Laura009]

Thanks Laura, I was offered Leeds. London or BIrmingham so picked Leeds I don’t know if I did right or not x

[AyrshireK in reply to Bs1524]

I wonder if you are able to get hubby to see a cardiologist for the artery issue, just in case there is something they can perhaps offer to remedy the artery making the transplant team a little happier about the chances of a successful outcome.

Best wishes.

Katie x

[Bs1524 in reply to AyrshireK]

I wondered if that would be suggested but the consultant never mentioned that only saying to go for a second a opinion as other centre may not be so conservative.

[Hidden in reply to Bs1524]

I am properly biased as I had my transplant there at Birmingham they are amazing and the major liver centre and have a large and very experienced team, its where my consultant advise me to go

I know lots of people have used Leeds as well and have received superb results.

Consider the travel as if accepted it can become a real issue, it was a 100 mile trip for us and even that builds up a fare amount of cost and takes most of a day each time

Either way good luck

David

[Bs1524 in reply to Hidden]

Hi David

Thanks, I went with Leeds as I was put on the spot so picked on travel it is about one and half hours travel time A1 and M62 I thought it would be easier then London although BIrmingham isn’t that bad a trip from here. Really though at this stage it all hinges on the opinion of the transplant team if they are will to proceed. I guess if they are willing to try I think Kevin would rather try then carry on living what is no love at all.

[Hidden in reply to Bs1524]

Its a very difficult question to answer, I know how I felt when I was told I had about 6 weeks left, its a very individual thing.

I know without the Birmingham Hospital I would no be here, its new and fully equipped in many areas of treatment

Its just my feeling of having a transplant that may be colouring my view of Birmingham

Check carefully Leeds experience and speciality's. I know they are a major centre, it's your choice and nothing is set on stone.

This was the advice given to me by a consultant, find the best specialist you can

I am sorry I am sure you have chosen right, I can only go on my experience, and I wish you only the very best.

David

[Bs1524 in reply to Hidden]

Thanks David, but right now it is whether any centre would be willing to do the transplant. Cambridge feel the risk is too high although without one it would seem Kevin has the same risk. x

[Blossom14 in reply to Bs1524]

Hi Leeds is an excellent choice. My husband was refused heart surgery by the NHS. I paid for a second opinion, he has a quadruple bypass by a LGI surgeon went without a hitch. The heart surgeon was all you could wish for. I really feel for you having been in a not dissimilar situation. LGI has an excellent reputation.

[Robbie21 in reply to Blossom14]

Hi Blossom did you mind if I PM you

[Blossom14 in reply to Robbie21]

Not at all. Look forward to hearing from you. C.

[Laura009 in reply to Bs1524]

Hi Pam. Addenbrooks was on our local news last week as they are greatly under achieving so l would definately try the hospitals which have been recommended by those here who have been through it. Good luck L x

[Flowergirl24]

Hi, like David. I had my transplant at Birmingham. I’m sure all the hospitals who provide liver transplants offer the best and highest standards of care & duty. I was sent to Birmingham by my consultant. They have an incredible team from assessment, coordinations through to the surgical team. The aftercare is fantastic. It was a 100 mile trek one way but worth every mile. By suggesting a second opinion is still hope for Jevin. Do not give up.

With best wishes

Caroline

[Hidden in reply to Flowergirl24]

We both want him the best possible result like we did

[Bs1524 in reply to Flowergirl24]

Hi thanks well there isn’t a lot in it mileage wise approx 75 to Leeds and 93 to BIrmingham. I am not sure how to check centres out the consultant from Ca,bridge just offered the choice of London, Leeds or BIrmingham and didn’t offer an opinion. I can try to reach Dr James at Nottingham to see if he would offer an opinion. x

[Hidden in reply to Bs1524]

All can say I would give Birmingham a Google 5* review

Not wanting to say I would hope they would be your best chance

But I repeat I can only say how they worked for me

David

[ThreeSmiles]

Hi Pam

So sorry to hear it has got to this point 🙁.

I am sure that most, if not all, people would recommend the Hospital where they had their Transplant. I’m like David and Caroline and had my TP at QEHB as well. So of course I think it was brilliant as well....

However, wherever you decide to go I hope it works out well for both Kevin and you.

Really really wish you good luck and I am keeping my fingers very tightly 🤞 for both of you.

Milesxx

[Bs1524 in reply to ThreeSmiles]

Thank you Miles it is hitting me more and more now and what this could mean. I am sure all the transplant centres are of an excellent at what they do. My worry is what if I have picked one that issue less conservative and then I worry what it would mean risking surgery where there is doubt about his artery, or is it better to at least try.

[ThreeSmiles in reply to Bs1524]

Pam - I think that if you find a Hospital that is in agreement to do the Transplant then you could rest assured knowing they would only do that if there was a good chance that the outcome would be successful. So it is, imho, much better to at least give it a try.

Of course none of us here can predict the outcome of their evaluation but let us all hope that Leeds do indeed come up with something positive for you.

Milesxx

[Bs1524 in reply to ThreeSmiles]

I am finding it hard to believe that if one centre raise a concern that another centre would go against it. It would be cruel to suggest getting a second opinion knowing that they would not contradict one and other. It wasn’t that we disagreed with them they suggested we go for a second opinion.

[ThreeSmiles in reply to Bs1524]

There are times when a second opinion is a good thing, isn’t it - and better still from the point of view that they suggested and not you. No “battles” to fight in asking for it then as you can quote what Addenbrookes said.

[Robbie21 in reply to Bs1524]

My husband was refused a transplant from Birmingham on the grounds he had cardiac issues and wouldn't survive the surgery. They did that off his results and didn't see him in person.

He had been working full as an ICU charge nurse till weeks before. We where devastated to say the least. Once we got over the shock of seeing it in a very blunt letter, which suggested pallatation was the only option. I pulled myself together and contacted his parent liver team who had not been informed and where very shocked. They asked us how we wanted to move forward & were in full support of a second opinion. They warned of the diminishing rate of a positive outcome with every opinion.

We chose Leeds for Ed's second opinion.

He was put through the mill and initally warned he would have little chance of survival. But at that stage he would die within months without the transplant We tried to focus on nutriction and keeping him as fit as physically possible. When they did the assessments they were surprized he flew through them no problem.

Ed was thankfully accepted on the list.

There were some very frank conversations about mortality and the many potential problems that could occur intra operatively. One was death on the table. But we accepted the risks.

It helped that we were both senior ICU staff and could understand the risks , but this also greatly added to the stress.

It was not easy to convince them that Ed was worth giving a chance.

It could have easily been another outcome. But I think keeping postive and focusing on the goal really helps. It became all consuming.

Thankfully Ed had his transplant within 5 days of going live in the list after 3 calls.

Ed does have some cardiac issues as a consequence of the reperfusion stage of the op. But otherwise he is fit and well. Walks 5 miles a day and enjoys life. So that is small consequence for the benefits of life that he recieved from the transplant.

We acknowledge that we are very fortunate as he was so high risk, but he beat the odds.

Ed recieved his transplant just over a year ago. The care he recieved from Leeds was second to none.

Leeds is a great choice and I hope your husband gets a postive outcome.

See post family and friends from 3 months ago regarding Leeds.

Sorry for the long response, but I was helped very much by someone during Ed's assessment and I truely believe that you can only appreciate the situation if you have stood in someone's else's shoes.

If you want to PM me feel free.

[Bs1524 in reply to Robbie21]

Thank you so much for your insightful message

[bantam12 in reply to Bs1524]

Be very careful seeking out the result you so desperately want, it may not be the right move !My husband was turned down for surgery by 2 specialist heart hospitals so I did all the research and we actually ended up at Addenbrookes who accepted him, got him in quickly and did the op, he died a horrible slow death in ITU a month later.

If we had accepted the decisions not to do the surgery he would still be here today so I blame myself for wanting to find a surgeon willing to take the risk.

[Bs1524 in reply to bantam12]

I am so sorry to hear what happened to your husband. The consultant told me that without the transplant we could be looking at 6 to 12 months so I think we should at least try x

[bantam12 in reply to Bs1524]

It's a horrible dilemma and so diffcult knowing what to do, we expected the best from Addenbrookes and they failed, badly.I so hope things work out better for you and your husband.

x

[Bs1524 in reply to bantam12]

I am sorry to hear that. x

[Laura009 in reply to bantam12]

So sad. I'm so sorry x

[Hidden]

Supporting Miles a transplant is not a black and white decision, there are a team of surgeons involved, specialist equipment and so many variables, It may be that Addenbrookes feel that a differently equipped Hospital with acess to different resources may consider it safe.

From their comments I would assume that they consider it worth trying, in a hospital world getting second opinions is normal

[Bs1524 in reply to Hidden]

He did tell me that the surgical team had had “their fingers burnt” and had lost patients on the table.

[Hidden in reply to Bs1524]

Its not all unusual for people to try many different hospitals, look at those that pay to go to America for treatment

You have to search for the the surgeon that will do it, I am sure there are a few out there

Its not a black and white situation, a real pain all the hassle especially right now

David

[Bs1524 in reply to Hidden]

Without the team reviewing the tests etc there is no way of knowing I am guessing a second opinion is exactly that and we won’t be able to have third and fourth opinions. I have read that Leeds is the third largest centre and also have a live donor programme I believe the first to do so. So they may be more experimental.

[Hidden in reply to Bs1524]

Bolsoms reply seems to look positive for Leeds.

I believe you can try as many as you like, it is down to very individual consultants and hospital policy's

[FlyingArrow]

Hi Pam I've been reading through everyone's lovely replies which I know is alot for you to consider plus I'm presuming is causing you lots if sleepless nights on which route to go down.

I cannot add or advise, however I've read lots of sucessful TP's stories carried out at the QE Hospital Birmingham since joining this forum almost 3 years ago!

Before I go Pam, I'm sending you some positive healing strength to help you focus on the road ahead plus a hug!

Love Trish x

PS ! Here's a hug for hubby too ! 🤗

[Bs1524 in reply to FlyingArrow]

Thank you so much Kevin’s Heptologist is calling on Thursday. I have had a chat with a friend who works in the NHS who has advised Leeds but we will take guidance from Dr James. I am not sure that the referral will amount to anything to be honest the nurse specialist I spoke hadn’t had any of her patients who had been sent for second opinions go on to transplant she did have colleagues who had though.

Thank you for your hugs here’s one right back at ya x