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.
I do try to write a blog about my journey and it can be found at 1liver1life.wordpress.com
As it states, it will be part funny, part madness, part sad, but always with a smile.