Just received my latest letter from Royal Free following an appointment at their HCC clinic.
By way of background i was diagnosed with HCC in March 14, had a resection, and then a recurrence in March 15. (Promise I don't suffer from March syndrome).
I have had my third Hepatic embolization last week as my tumour had grown to 29mm, and another 2 tumours had been discovered which really needed dealing with. Other than an increased feeling of lethargy and the ability to sleep for 12 hour stints, a little bit of nausea, things seem to have gone to plan. I will not know for sure for 6 weeks once I have had a follow up MRI.
Anyway back to this mornings letter, which states - "We have also discussed that he is an internal priority, but we are waiting to be offered a suitable donor liver that would match his size and cannot be a marginal donor due to his previous abdominal surgery".
The last part has been explained as due to my previous resection a non-breathing donor would not be a suitable match as it will take too long to effectively prepare me. Is that correct, if so I get and understand that, although the comedian in me would think "Just use a sharper knife".
So my question is purely what would make a suitable donor organ for someone like me. I am thinking blood group "O", would be a great start as that sorts out the blood match nicely. The big unknown for me is the size of the donor organ, and as much as I can accept a very small liver probably wont quite do the job, what are the parameters thereafter.
I weigh today 105kgs from a maximum weight of 156kgs. I know you think he must be a giant, but only when lying down. I am a mammoth 170cm tall. I think the medical term was "Short and Fat". So that's nearly a third of my body weight gone. Am I looking at people who have a minimum and maximum weight or BMI, or am I looking for someone who is as close to a body size match as me. Could my options be a good healthy organ (that would be a good start) from a donor who is anything from 75kg up or is it actually more precise.
What does an "internal priority" mean? I have been on the list for 10 months now, and feel that I have been drip fed information on what seems like a "need to know" basis. In October my hepatologist said we will see you just before Christmas, but hopefully you will have been transplanted by then, to March being told I am an Internal Priority. That's like someone telling you the toilets are going to be fixed at work sometime soon.
This is the part they don't quite give enough credence to when you are being tested for suitability for a transplant. You might think you are strong enough, but your head will certainly interpret things differently.
Sorry if this all sounds crazy, it wasn't meant to, but if you could throw some light, opinion, or even experience on this subject, I am sure it will help me and plenty of others.
Hi Ray. There are quite a few transplant patients better equipped than me to answer you, but while you wait for them to come along, I did find a document recently that had some useful info.
It seems there are 4 categories of liver transplant patient and HCC patients have their own category:
3. Metabolic liver disease (including liver based inborn errors of metabolism)
4. Liver cancer (HCC)
I would assume, but others better qualified will correct me if not, that the super urgent acute liver failure patients will always have priority over 2,3 and 4, unless your cancer moves you into category 1 - i dont know, just guessing.
There are 2 main types of donated organ i think:
Donation after Circulatory Death (DCD)
and
Donation after Brainstem Death (DBD) donors.
Have your team said you are more likely to be eligible for one over the other?
There was a thread on here recently that discussed transplants using the Organ Ox machine, which keeps the circulation going in a donor organ, but I dont know which centres use this (QE Birmingham does) and I dont know how they select the patient.
Have they said whether in your case UKELD applies?
Guidelines suggest you should be in contact with the transplant team at least every 3 months to re affirm consent. Have you asked them what you have just asked us?
TBH, its out of your hands in a way. If you were offered an organ, and the team were happy to transplant it, even if they say its not 100% perfect in some way. would there be anything that would make you refuse the surgery?
You are correct, I am only eligible for DBD donation as that would allow me to be better prepped before the machine was turned off and the organ extraction took place. This type of donation accounts for about 60% of all transplants currently.
I also understand that it is not a possibility to transfer from 2,3 & 4 into the super urgent category and have access to the national list either.
UKELD has never even been discussed with me, and at the assessment meeting last May, when outlining the potential outcomes for the group, they were told there were three possible outcomes, you were listed immediately, you were not listed because you are too unwell or unfit, or you are sent home to be monitored and would be listed as things got worse.
As I had no other medical issues, I asked would that be a possibility for me, and the nurse laughed. Apparently HCC is a straight yes or no. The others may well have been assessed using UKELD as an indicator of health, but mine was simple are you well enough, and do you meet the Milan criteria. Happily for me it was a yes to both.
I get that it is out of my hands and I could never foresee an occasion where a slight second would make me think twice about it.
Its the terminology, which changes from meeting to meeting which is my bugbear, what does an "Internal Priority" actually mean. She never used those words in front of me, she actually said "You are now top of our list, and as soon as a suitable organ becomes available we will be calling you".
If they mean the same thing "great", if not someone please interpret, doctor speak for me. The rest is just gaining a greater understanding around "suitability". What does it look like for me, in terms of the donors profile, minimum and maximum height, weight & BMI. Once I have this info I will be able to pass it on to the next person et etc.
I fully understand that this is a very inexact science as we are dealing with humans here, but there must be an average that can be sourced from somewhere. eg: you weigh 100kgs+ = your donor will be 85-100kgs,
You weigh 90kgs = your donor will weigh between 75-85kgs" or something like that.
Hello Ray, I cant answer any of your questions but would like to thank you for making me stop feeling sorry for myself. I have had the flu since Thursday which ruined a long awaited weekend away, you are going through much more than I am.
I also got that short and fat diagnosis, which somewhat p***ed me off, but now I am managing to do something about that, well not the short bit. I hope you get some answers
What is that old saying a problem shared is a problem halved. Funnily enough I always feel better when I have unloaded the crapfest that can go on between my ears into something even mildly readable.
There is definitely something cathartic about it.
Short and Fat huh. I went into a shop in the states once and it was called "Long and Short" or something like that. They had trousers with 80 inch waists and 48 inch inside legs. I said to the salesperson you should change the name of the shop to Giants and Dwarves, apparently not PC so I was asked to leave. Have actually walked into a famous fashion brand in the UK and asked a sultry salesman do you have anything that would fit me, he said "Sir, the scarves are over there".
Now I am so called normal size, my personality has outgrown my body, so guaranteed to say the wrong thing at any moment. Remember the old saying "Sticks and Stones ........."
Hi Ray, by the sounds of it they are waiting for a whole brain deceased donor liver for you who will be an appropriate size match - this matters due to the lining up of the 'plumbing' during transplant so that there is less chance of blockages or issues at the joining of the pipework.
You arn't eligible for a live, split or cardiac deceased liver as you need the best of the best available due to your size and your earlier issues & of course there is huge demand for the best and sometimes the 'best livers' are actually used for split liver donation as they are the most suitable for splitting and giving an adult and a child the best chance of survival.
Blood group O is the most common so technically there should be more O livers available but it is also the longest waiting list as there will be the most folk waiting for an O.
Internal priority means you are high up or the highest up on the list for your transplant centre.
Each transplant centre has a core group of hospitals from which they receive donations - when they receive a liver from any of these hospitals your co-ordinators will see check their lists to see who is an appropriate match and that patient will then get the call. IF there is no one who is a suitable match on their list then the organ will get offered elsewhere - to the next nearest centre so no suitable organ goes to waste.
Overriding all this though is a super urgent list which basically means there is a UK list where those whose lives are in immediate danger get offered any suitable organ first - this generally means these folks have under 48 hours to live so they take priority over anyone else.
Sadly when my hubby was listed we got mixed messages, some doctors were using the phrases "If you're not transplanted by then!" and others were telling him he didn't actually meet the transplant criteria so like you we left clinics in a total spin & especially so after 10 months on the list when he actually got delisted because his bloods improved thereby taking him out of the criteria for transplant (even though his health remained the same).
It is a really stressful time for all involved and I hope you get your call sometime soon, if they are saying you are internal priority then it is just a case of waiting for that suitable matched liver for you and no one can actually say how long that will take. Keep looking after yourself - are you on supplements to try and keep your weight up?
I do wish you all the best and hope your call comes soon.
Both your 'the scarves are over there' post and Annew's post made me laugh out loud, in a twisted way, as that was a horrible thing to say to you (but it was funny, sorry).
I remember watching a transplant doctor from - probably Kings but it could have been Addenbrookes, am a sucker for any tv documentary to do with health or the liver - and he explained that since the tightening up of the seat belt legislation the 'quality' (stop reading now if you are easily offended) of organs has gone down as there are no longer large numbers of young men killing themselves in road traffic accidents leaving lots of healthy body parts for donation.
The chances are you will more likely be offered an organ from someone older with pre existing health issues. And that same organ will be less than perfect, but will 'do'. Sounds awful I know, but that's what the transplant teams are dealing with in a way, making the best of what they have to give people the chance of an extended life.
Some transplant centres receive more organs than others, dont ask me why, it just happens that way. There may be some statistics out there for the centre where you will be treated.
Also I hadnt realised til i signed up to the register myself that organs are only retrieved from people who die in hospital - not at home, not 'out and about' etc, so that reduced the numbers of available organs again.
And very well explained. You have answered all of my current questions, now its just back to waiting and hoping and praying that before its too late the magical call comes in.
I will only drop off the list if my tumours breach the Milan Criteria, and as a matter of course I am regularly scanned, and embolised as required to as much as possible avoid the Armageddon scenario.
Pat of being on the list is I have to be extremely careful about my weight and more specifically my BMI. It must at all times be <40, and although I have fluctuated and been up as high as 39.5 whilst on the list, I am 35.5 today, and always looking to reduce sensibly as this will aid recovery.
I am on no medication other than Lansoprazole 30mg once a day, and I have been on this for decades now.
It is the not knowing what they are saying that drives me mad, but it appears on this occasion they are effectively saying the same thing.
Thanks again, my mind is beginning to slow down now.
Hi Ray, Sounds like good news is on the way. Out of curiosity would you be able to please tell me what your albulmin and bilirubin are? And whether you suffer from ascites which I assume you dont if you are only on Lansoprazole. Also, I cant remember but what caused the HCC?
It's just that you are so lucky getting the embolization treatment to keep the HCC down and that had always been refused to my husband. I was wondering whether it was because he had poor blood results and a decompensated liver and they said embolization would be too much for it.
Thank you Ray, for answering that. My husbands albumin was down to 25 and Bilirubin in the 40s i think it was - and he did have ascites - that had been the only thing that really had alerted our attention to there being any problem at all!- and even then we thought it was digestive wind issues - so it all came as a big horrible shock and simply too late. That was last March 2015 - and it was found he had a very active hepatitis B so I suppose for all those reasons they didnt do the embolizations. Sometimes I wish they had at least 'tried' because at the end of the day ( October) the battle was lost - they were waiting for the blood tests to improve before any treatment and waiting for in their words " a Window of opportunity" ...........Well, I would like to smash their ***** window of opportunity as they never opened it for him.
having said that rant over! i suppose they did try their best and act in what they 'though't his best interest......
Sorry Ray for this outburst! when all you did was kindly answer my question!
AND
I hope they HURRY UP and find the right shape and size liver for you AS SOON AS possible -
You can rant all you want. This is the perfect place. People understand and can empathise. The only guarantee we are given along with the diagnosis is normally " not everyone's story will have a happy ending" that as you can testify to is so so true. I hope that your experience is something we can draw strength from as we patiently if not perfectly sit and wait.
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