Tests before a liver transplant

[marknash67]

Hi everyone. I'm Mark. I'm new to all this. I've been told that I will have a liver transplant. I've been told also that I need test done.... heart.... lungs ect. Can anyone tell me what the test are and length of time doin the tests please. As you can imagine I'm s%%ting it. Lol. Thanks x

[Kji378]

Hi 🙂 Welcome to the Liver Lovers or haters club, *depending which way they view it). 😁

Hopefully some helpful other people will give you more feedback soon.

May I ask what caused you to be put on a transplant list, apart from obviously liver failure? There are alsorts of of reasons ie HEP C, NFALD, Alcohol - plus the other different medical issues.

People can help you further if they know what the reason is. I hope that makes sense.

Don't be scared, we'll done for posting here. You will get more answers soon...hang in in there!

Take good care 😊

[marknash67 in reply to Kji378]

Hi. I'm not ashamed to say it is alcohol related. I was warned and warned and warned but I didn't take heed and carried on. I've always battled with drink and because of that I feel like I shouldn't have a transplant. I've stopped drinking for over a year now and am goin alcoholic anonymous. I know that I'll never drink again. Ever.... and I'm very happy about that. Also I feel bad cos someone eles will pass away so that I can get a second chance. Does that make any sence???

[Kji378 in reply to marknash67]

Yes it all makes complete sense 🤗

I don't know, can only imagine what it is like, but you will receive great support through it all, for the aftercare and with the emotional and guilty feelings. Everyone I have been in contact with for TP, has their own personal journey with the other families loss...but you didn't cause that death, it wasn't your fault so in your own time I'm sure you will be able to harmonise with it all and vice versa.

Its not you're fault, so just focus for now on the great life you can have after receiving your 'gift'. 💞

You have lots of great positive replies, which is brilliant.

STAY STRONG, STAY POSITIVE, STAY focused and I wish you all the best with your new adventure of life.

Take good care and be kind to yourself. 🥰

[joeburger in reply to marknash67]

Hi, Please don't have survivors guilt before you have even been accepted on the transplant list. Ask to speak to someone at the hospital before it gets out of hand.

I suffered with it afterwards because I really didn't want to survive my operation. When I talked to my consultant he put it as only a doctor can and said that person would've died anyway.

Like Kji378 has said think about how you will feel afterwards, it is an amazing feeling.

Good luck and well done for turning your life around everyone deserves a second chance.

[Livaa in reply to marknash67]

no one will pass because of you. We all die all the time for no apparently good reason (well, sometimes we do). Thank your greater powers that the level of medical technology we have that this is an option for us.

[TT-2018]

I think that you might be referring to an assessment, prior to be accepted on a transplant list?

In order to get through a transplant, it’s a massive surgical procedure, you need to be ill enough to need one but well enough to get through the whole process.

Depending on the hospital, it takes several days and they will put you up in accommodation. It’s a good idea for someone to accompany you. Try not to worry too much because the doctors who have put you forward believe that you are suitable, the tests are the last step to confirm this.

Keep trying to exercise, as much as your condition allows. They will check your heart, lungs, have you walking up a couple of flights of stairs etc. Plenty of blood tests, scans, heart monitors etc. There will be a presentation where you are able to meet the transplant coordinators and ask any questions. Be assured that they are not expecting someone to be in great shape but they need to check that you will get through the major surgery.

Good luck with everything, it’s exhausting both physically and emotionally but all being well, the majority of people are accepted the first time.

[Lippy42]

Thinking of you I know you'll get lots of advice here there are some fantastic members with lots of insight 🥰

[marknash67 in reply to Lippy42]

Thank you so much x

[Porcupine_Tree]

Hi,Your questions and concerns have been addressed very well below.

I have just completed my phase 1 assessment which was one day (0930-1530). Meetings with Liver Coordinator; Dietititian and Health care worker in the morning. ECG ; Echocardiogram; Ultrasound and chest XRay in the afternoon. I am now waiting for phase 2 dates, which I was told could be 4-6 weeks. This is over two days and if travelling far, best to stay over night.

You will meet with the "Liver Team" as a group and independently. They will discuss test results from phase 1 and answer any questions/ concerns you may have. Phase 2 is normally on Thurs/ Fri and the MDT will reconvene on Friday to make a decision. The Liver Coordinator will contact you early the following week to give you the details. If you and

the team agree you could be on the list by the end of that week.

MDT- Multi Discipliniary Team.

It is important your partner , carer attend these two days.

Good luck, You will be in safe hands !

[Porcupine_Tree in reply to Porcupine_Tree]

I meant Wed- Thurs for phase 2 !!

[Chasdog]

Hi Mark, whilst the assessment is emotionally exhausting, the tests themselves are not too onerous and well described by others. Having a transplant is obviously a serious and major operation but honestly, the best thing ever 😊👍 It’s not without its challenges, but honestly, you’ll get your life back and start to live again. Good luck and do keep us posted. 🤗

[Arms-1]

Hi been with my partner this week at Leeds for his liver transplant assessment. I suppose all transplant hosp vary. Our experience was;Day 1, 8am met the liver co-ordinators had chat about what would be happening, weight and height and BP, MRSA swabs, blood tests. 8.30am ECG and echo. 10.30 MRI of liver straight after CT of lungs and chest. 11.30 chat with liver surgeons about the op looked at test results. 2pm chat with dietician and strength tests and measuring body fat. Done for the day stayed in the hosp hotel very nice and comfy. Day 2: 10am cpex which was on a bike and other breathing tests. Last app with anaesthetist 3pm, Heptologist on Al so no appt with them and lastly frailty test with coordinator and last q&a time , MDT meeting next Monday with the outcome. Day after home phone call from alcohol nurse who also part of MDT. A very busy 1 1/2 days lots of walking from dept to dept. Everyone we met was friendly and kind, it's ok and informative answered lots of questions ... we was apprehensive too got some fab advice from lovely members on here before we went it's true it's ok !!!. Best wishes to you

[LemonMeringue15 in reply to Arms-1]

Would you mind describing what you discussed with the dietitian and also what the frailty test involved, in general terms. I'm trying to figure out if my ex would qualify on both grounds. Thank you

[marknash67 in reply to LemonMeringue15]

I'm not that far yet. Sorry. X

[LemonMeringue15 in reply to marknash67]

I know, thank you, I was asking Arms. Good luck with your tests.

[Arms-1 in reply to LemonMeringue15]

Hiya lemonMeringue 15 yes the dieticians same advice as the local dieticians he's been under for a yr. talked about eating little and often breakfast, snack , lunch , snack, Dinner, snack and a carb snack before bed very important. He has been prescribed protein shots but very unpalatable for him. Lost a lot of muscle mass coming out of hosp Jan 21. It's come back a bit, so excercise weight building is very important for him for his upper body and arms. The fraility test was short walk. Standing on one leg and putting one foot in front of the other keeping balance. Hope this helps

[LemonMeringue15 in reply to Arms-1]

Thank you, that does help

[Huggy7614]

Hi Mark,

Others have described the process well, although the structure varies from centre to centre, the principles are the same.

Just remember, you’re being offered the assessment because people feel you may need it. They are genuinely looking to see if it’s right for you. None of the tests are invasive, and the whole process is informative.

But as chasdog said, should you be ready for transplant, and receive one, it really will change your life!!

Good luck with it.

Andy

[Bikafella]

Nothing to add to the others except you may not be allowed a partner to be with you (COVID). You will find out how fit you are and if there are any medical issues that need attention such as likelihood of bone density test, varices, brain and heart function including balance. I saw people on the transplant ward who were very unfit for the operation and lived a poor lifestyle. With little chance of getting the transplant unfortunately. So your good health is critical.

[Kristian]

Hi Mark

You've got some good replies already, but, at the transplant assessment stage the tests are not much different to what you may have had before. In the main they are all pretty unintrusive and dont take too long to do. The main time is just waiting for your turn, lol.

[Dogbot]

Hi Marknash67 just as everyone has told you it’s just to make sure you are fit enough to go through the operation, one of the tests I had to do was cycling and I have arthritis so my hands and feet are sore. While I was on the cycle my hands gave up first and was so sore I had to change position of my hands and at one time sit up and cycle no hands. The team there gave me flying colours pass because I kept going and they could monitor me, so not exactly Chris Hoy but I aloud them to finish the test . You see you don’t have to be superman just hart , lungs and mind good for the operation. Good luck and don’t worry about it to much just do your best, they know how bad your liver is 👍.

[qwertyuser in reply to Dogbot]

Can you tell me more about the cycling test? How long did it last? Was it zero resistance?

[Dogbot in reply to qwertyuser]

I think it’s about 10/15 minutes they do put a little resistance on it, but they take into your age, health and change the test for every individual. Really don’t worry about it to much they will help you as much as they can, I think the main thing is they want you to finish the test so they can get a proper result. You will be out of breath and probably well knackered at the end but that’s what they want . Good luck just go with it they are not there to trick you or anything like that, you will find them really nice and friendly 😀👍.Stay Safe All

Dogbot 🐶🌈Dave

[Lam1e]

Hi Mark

You have had some really good replies which will hopefully have answered most of your questions.

Only thing I can add is find out if there is a local or regional support group. This site is fabulous, but one of the best things for me was getting support locally too. We have Zoom chats and a Facebook page and now we are starting to meet up👍

When I was assessed I just thought about each assessment individually and then moved to the next one. Everyone was lovely and so supportive 💜👍

[andy-g]

I had a great time when I was tested brilliant staff at Addenbrookes. We managed laugh a lot. Yes it is scary but it means you may be lucky to be one of the fortunate few who get that second chance at life. I am already more than 5 years past transplant and thankyou every day to still be here. Good luck.

[A9KSY]

Not trying to worry you in any way, the assessment is pretty extensive you will have all sorts of tests both physicall and psychological my assessment was over 5 days after which I was rejected as they thought I still had a problem with alcohol despite not having drunk alcohol for 2 years prior to this I honestly felt like I had been handed a death sentence.However about 9 months later and by this time I was really ill and was reassessed and was put on the transplant list this was the Wednesday and got a call on the Friday telling me that a liver was on its way and to make my way in.

Here I am 4 years later still alive and loving my second chance, never give up.

[Oldbits]

One thing that I hadnt noticed to be mentioned is they ask you when you last went to the dentist. I went with my husband last july. Covid lockdown or no covid they wanted to meet me as his carer after the op should it go ahead. We went to kings in london and they put us up for the three days . The tests are not invasive but there is a lot of sitting around so take a good book and a well charged phone , plenty of snacks etc. Write all your questions down so you dont forget any and write the answers too. No question is a silly one they've heard them all before. Good luck

[qwertyuser in reply to Oldbits]

Do you know why they ask about the dentist? It’s one part that makes no sense to me…

[Oldbits in reply to qwertyuser]

I believe that it's to do with infections if you have problems with your teeth and the type of antibiotics that they use to treat them. Also alcoholics can have problems with tooth decay and consequently antibiotics. Also that untreated infections can cause sepsis and with a weakened immune system after the op you dont need extra problems.

[qwertyuser in reply to Oldbits]

Good to know, thanks!!

[Hidden]

Hi Mark and welcome,

It is great to see what supportive replies you have received. In addition, here is our information on Liver Transplantation that has a great FAQ section that may be helpful;

britishlivertrust.org.uk/in...