What Questions Should We Be Asking The Transplant Team

[Bs1524]

Bit of a long title sorry.

We have the date and time for the “Meet the Team” meeting and the gp yesterday Kevin has an infection in his legs asked if we had our questions written down.

That got me thinking what did you find helpful?

Pam x

[TT-2018]

In my assessment, we had a session with the other patients and their families. The presentation was made by the Transplant coordinator’s and involved a Q&A session that was extremely helpful. But in my case, two things spring to mind. Firstly that they didn’t mention that it could be a false alarm. You get called to the hospital and taken by ambulance, but have to get home under your own steam.

Secondly, there is no preparation about the reality of waking up in ICU. I would ask questions about that and it would definitely help to get a visualisation. Also request that you partner has a notepad in order to try and communicate with the breathing tube inserted.

Best of luck with everything.

[Bs1524 in reply to TT-2018]

Thanks I would not have thought to ask those questions or about using a notepad. X

[Lam1e in reply to Bs1524]

I think TT-2018 is spot on with what to ask! I was called more than once, but I had transport supplied both ways, but then I was going from Plymouth to London, so perhaps it varies! ITU is definitely a very strange place, I kind of felt like I was on the starship enterprise with all the high tech stuff everywhere!

The other thing about ITU is they are not keen on personal items as you leave from the ward to go to theatre and then go to ITU, so perhaps get clarity on that too! It may be different at your transplant centre.

The other thing that would have really helped was to have a bit of a chat with some One who had their transplant, they had hoped someone would come but it just didn’t happen!

If you have questions after the assessment the co-ordinators should be happy to help.

I am sure it will all go well🙏

Lesley

[Hidden]

Hi

Travel is a big one getting there by ambulance is easy

Getting back was not as easy

We were not sure which day it was going to be till the day I left

In the end it was as taxi for 120 miles

ICU the ventilator was removed as soon as I woke up

I found it reassuring as there was always nurses on had

My wife to had to stay as we live along way from the hospital

So accommodation and food for yourself and be prepared for a lot of walking as hospitals are usually large

Think about things at home that may be left for some days

We left the heating on high in the rush and my transplant was done when the beast from the east hit

(Made the ambulance trip fun)

Take a pad to the initial meeting and note names an things so you remember later it may be months before the call

Don’t worry the staff are Incredibly helpful

Lo ok after your selfs

David

[Steak]

Hi i agree with the other replies especially the ones regarding the suitability and false alarms. Also I was taken to icu having been woken up beforehand. The staff hadn't been told that and apparently I pulled my tubes out and alarms went off and my relatives ushered out more worrying for them than me. I think most patients are still sedated when they come to icu so u can come to more slowly but my anesthetic (excuse the spelling)doctor apparently wakes them up as soon after op so they go to icu awake and the nurse hadn't been warned. Another thing 2 ask maybe. I also agree with maybe having a transplanted person at the session as they will be able to answer questions that coordinater doesn't necessarily ask. In my session they were 2 other couples and I made good friends with one couple and we have stayed in touch even though she hasn't required transplant at this stage and is off the list at moment. Try not 2 worry to much everybody is in the same position at these sessions. Take care and keep well. X

[Hidden]

Good morning Bs1524,

The most useful responses will be from your friends here on the forum who have shared this experience.

I have simply added a link to the Patient Charter page - at the very bottom is a section 'questions for your doctor' which may be useful.

britishlivertrust.org.uk/li...

Keep us posted,

Trust9

[Landon11375]

I’m not sure of Kevin’s size but ask them if he is a candidate for a liver from a bigger person. Once they measured around my chest and found out I was, I got the liver transplant call only weeks later when I was still low on the list with a MELD score of 24 (I’m in the USA)

I couldn’t believe it when I got the transplant with that low of a number and I’m sure this had alot to do with it.

Best of luck and I am sending every positive vibe possible your way!

[Whatdowedo]

Hello Pam, my husband had a TP almost 3 weeks ago,. with Covid It is all done ‘remotely’ Which is hard when in the past relatives were able to be in hospital.The TP coordinators were great, kept me updated throughout, and once on ITU I could call direct to the nurse at the bed.

Sometimes the coordinators are dealing with more than one patient and I was promised a phone call at 6pm on the day of the op, but they didn’t ring till 7. My mind was into Negative hyperdrive By then, so don’t panic as I did if they don’t get back to you exactly on time!

My husband had Some bizarre hallucinations when he was in ITU, results of the drugs/ anaesthetic, apparently not uncommon.

We were called in on a Sunday and went Straight to the hospital but there were delays at the donor end. Not quite a false alarm, but at several points we did wonder whether it would happen. In the end the TP op was on the Tuesday morning, the coordinators said it was very uncommon to go like that, but my advice it to be prepared for any eventuality.

There was another education session before he came home - they did it with him rather Than in a group, and I was concerned he might not tell me everything useful to me as his carer on return home, so I would ask the coordinators to take you through what they tell him before he is discharged.

This forum has been really helpful and supportive to me on the few times I have used it, so ask here if anything comes to mind at any time.

Good luck!

Sue

PS the biggest ‘issue’ my husband had Was the hospital food. Pretty grim by all accounts. And he was in hospital for about 10 days after the op, 7 on the ward after ITU. I would check whether you can send him in with some ‘treats’ in his bag. Obviously nothing that can ‘go off’ but something nice to nibble on in those low moments when he’s in discomfort.

[TT-2018 in reply to Whatdowedo]

Excellent point about the food, I had some energy bars with me and wish I had taken a few more things. The food is definitely terrible.

[Bs1524 in reply to Whatdowedo]

Hi Sue,

Thank you for the information so did you take your husband in and had to leave him there? If it had been a false alarm would you have had to go and collect him. We live quite away from the hospital and I work full time I can see a logistical nightmare unfolding. I am trying to save up my leave so I can be off to take care of him if he makes the list. I have an appointment in London next month and I am wondering if I should cancel it is my annual dental implant check up. There are so many unknown variables with this.

Pam x

[Whatdowedo]

Hello Pam,

Yes, I left him at the hospital, watched him walk through the door with all sorts of emotions.

I do understand your dilemma re practicalities. How is your employer? I spoke to mine quite openly and thankfully have a very understanding boss who is allowing me to work flexibly from home at least up until Xmas when hopefully things will have settled down. I was also able to take him to his appointments pre TP which became more frequent as he got More poorly.

My husband Now has weekly Outpatient check up appointments at the hospital where he had the TP, and in fact his first one was 3 days after discharge. We thought this was a bit soon, but in fact they discovered he had contracted CMV, so they put him on antivirals straight away. Then, 2 days later he got a fever and pains in his chest, so I called the on-call TP coordinator and I took him straight back to the hospital to A&E (again, had to leave him there on his own). they diagnosed an infection and he’s been there for the last4 days on antibiotics.

Apparently this is all quite ‘normal’. I live an hour’s drive from the hospital and on the check up days I end up spending much of the day out with him as they don’t like TP patients to use public transport (quite understandable). I Book parking close to the hospital and take work to do from my car or a local coffee shop as no visitors allowed In the clinics. The hospital visit takes a good part of the day because they need to do bloods about 2 hours ahead of seeing the medical team.

I was lucky as I say, because I discussed the need to do this with my employer and they have given me the flexibility. If they weren’t able or willing to do that I am not sure what I would have done. Apparently, there are some statutory types of leave you are entitled to and your employer might have its own policy on such things so it’s worth investigating those now if you are concerned.

I would Also have a discussion with the TP coordinators about possible/ likely scenarios so you know what might be needed.

In the end, you are right, in my limited experience there are many variables and flexibility is the key word. Juggling is the name of the game For me right now, and it has been exhausting, but hopefully once we are through the early stages, it will settle down. Although I am still on the early stages of our journey, and even with all the many unpredictable logistical and emotional challenges it presents, I am massively thankful that my husband was given the opportunity for a TP.

I hope I haven’t Caused you any extra stress by sharing my experiences to date. Of course, Others may Have different ones from me.

Try to stay Strong and positive.

Much love

Sue

[Bs1524]

Thanks again no you haven’t added to my stress I prefer to know what is expected . I will find out but I think due to the distance to Addenbrookes it is approx one and half hours depending on traffic I believe the follow up appointments are done at Nottingham which is around an hour away or a bit less again depending on traffic.

I am working from home and my employer has been great so far. So check up days are quite long appointments again worth knowing before hand not just for me but Kevin also.

I was hoping that some of the clinics could have been at Grantham but Covid has put paid to that.

Thanks again

Pam x

[Lam1e]

Just another thought. I bought a cheap pay as you go phone and gave that number to the transplant co-ordinators and any health care professionals to do with my transplant . I carried it with me and knew that if it rang this “might” be the call! Just meant I didn’t panic every time my normal mobile rang! You do need to have the phone with you 24/7 as they can ring anytime! Might also be worth asking how far away from home should you be as certainly they were not keen on me being more than 30 minutes away for ambulance reasons! Also if you are planning to go anywhere out of area you might need to let them know!

Hope that is helpful 👍

[Bs1524 in reply to Lam1e]

Good idea,

We never go anywhere apart from GP or Hospital but we live hour and a half away from Cambridge so not a lot we can do about that. I like the idea of a phone number that only they have especially when there are so many scam calls.

Pam x

[Lam1e]

Sorry I meant they wanted me to be no more than 30 mins away from my home, not the transplant centre as they will only collect you from home! I pretty much never really went anywhere other than the hospital or the local shops either👍

[TT-2018 in reply to Lam1e]

I ended up spending 19 months on the waiting list, due to type B blood. If I went anywhere further than near home, I would always let the transplant coordinators know and also check that wherever I was going, had a good phone reception. There are still plenty of areas with poor coverage.

[Lam1e in reply to TT-2018]

I only waited 3 months, but if the first liver had been suitable it would have been about 10 days after my assessment. I had only just sorted out my ‘go bag’! I always had a plan, not that I really went anywhere apart from a friend’s wedding in Cornwall and they took me off the list for one day so I wasn’t stressing👍 I still have a bag packed 🤣🤣

[TT-2018 in reply to Lam1e]

The average wait is 135 days but type B blood has a donor shortage. Therefore the coordinators were very understanding and would make a note of where I was, so they would be prepared, should an ambulance be needed.

I am sure that you were nervous about being off the list, even for the one day?

[Bs1524]

Now it makes sense 😀