Liver Transplant assessment

[Alicja_mb]

Hi all, I'm currently in Manchester hospital but got the news that I'm being transferred to Newcastle for transplant assessment. If a bed is available I'll be taken by ambulance tomorrow. What are the tests like? Has anyone had experience of transplant at Newcastle?

[AyrshireK]

Good luck Alicja, hope it all goes well. You are a pretty unique case Alicja since it is your major health problem which is causing you to perhaps need transplant rather than full on liver failure due to cirrhosis. The tests you need may be very different from someone with advanced liver failure because you may (I guess) be looking at a potential multiple organ transplant since from your earlier posts your liver, lungs and heart may all be affected.

In a 'normal' liver transplant assessement they test your need for transplant, your overall other health to ensure your lungs and heart are strong enough to endure the surgery and recovery, tests to make sure you have no other health issues which might rule out the surgery such as cancers outwith the liver or dangerously sized tumours within the liver. There is often some involvement of the social work team, psychiatrists, lots of discussion with transplant co-ordinators, surgeons, anaesthetists, dietician and such like.

Yours is a pretty unique case so the transplant assessment may be completely different though the Freeman has an excellent reputation in transplant procedures and care so you will be in very good hands.

Wishing you the very, very best of luck, hope all goes smoothly for you.

Katie xx

[Jahida]

Good luck Alicja. You are a very strong woman. It is so hard to have a liver transplant but you need so many organs in one go. I unfortunately do not know what tests you go through didn't go through the typical route? I was put on the super urgent list whilst being in hospital really unwell.

Wishing you all the best and hoping you are put on the list and everything is done quickly for you! I will honestly be praying for you and your health for your two beautiful children xxxx

[Alicja_mb]

Thank you all for the information, I'm praying I only need a liver. It's all very real now, bed ready ambulance booked in the morning. I'll let you know how it goes. In terms of unique I have actually been told I may have a one of a kind condition! Xx

[Bolly in reply to Alicja_mb]

Thinking of you Alicja and wishing you well. Keep in touch and continue to be so strong and brave. 😘

[cazer]

Good luck.cazer.x

[dizzime]

Good luck Alicja-Hope everything goes ok-tests not that bad as already been said in other posts. great news that you have a bed. fingers crossed for you. Stay strong and positve x

[Alicja_mb]

Thank you for the words of support. Hard being 4 hours drive away from my family and going to service stop in my pjs on the ambulance journe wasn't great. But I am grateful to be in such a nice attentive hospital as apparently rare to be transferred so quick. In MRI I'd see a doctor once a week now its every day, everything including staff much nicer. Unfortunately my temperatures still spiking badly probably due to the abscesses. I might not nessarily be getting multiple I'm praying tests show just the liver if my lungs can pass the test. Testing starts Monday. Not sure what happens next as I'm deteriorating each day. Not sure if it makes me a high priority or not. So worried it would be too late for me if put low down or even rejected because of the temperatures. Xxx

[Jahida in reply to Alicja_mb]

It can't be the most glamorous of journey and certainly hard being 4 hours away from family. However you remain strong and positive because this will see you through believe me. Of course have a vent and let your emotions out but do not let it bring you down.

I'm praying you do not need a multiple transplant either. Lots of best wishes for you x

[Alicja_mb]

I'm so worried, tests start tomorrow. Been told might be bike and stair test but I've been in hospital for 4 months with muscle wastage I am wobbly on my feet plus get out breath quick. My oxygen levels are always a little low too. It looks like a triple I'm so gutted. Xx

[Bolly in reply to Alicja_mb]

Hang in there Alicja and see how you get on with the tests. I'm sure they have come across patients before who are physically as weak as you are. Good luck and stay in touch.

[PCBnPBC]

Good luck Alicja, I had a liver at Newcastle in Nov 2014, live 1 hour away from manchester into N. Wales, so a good 4 hours away, it was / is a bit strange when I end up in a bed in Newcastle (both pre and post transplant) when family find it difficult to visity due to the long distance involved, Newcastle staff are superb, ward 12 ? if so you are lucky! Love them all.

[Alicja_mb in reply to PCBnPBC]

Great hope it all was a smooth ride for you, and guessing it was successful yep ward 12 in a side room until they decide I'm not contagious from the Manchester ward.

Found out there's a charity for liver patients family staying providing accommodation for only £5 a night. Only thing is not everyone can visit due to work etc...

Looks like they are exploring various options guess I'll find put what they decide next week as despite my abscess my liver functions improved but I know it it fluctuates.

[PCBnPBC in reply to Alicja_mb]

is that abcess on / in the liver?

good luck, you are in good hands.

my xplant was good, but I have a bile duct issue post tx,( Ischemic Cholangiopathy) (had PBC bile duct issue as cause of TX) that I am told may cause absesces in liver, and could cause me to revisit a transplant #2.... currently I am well! dont take this the wrong way, but I hope not to meet you in Ward 12 !!

yes, my wife stayed in the room you talk about. still a long way from home! how come you not in Leeds?

Charlie

[Alicja_mb in reply to PCBnPBC]

Sounds scary hopefully won't come to that! how long did it take to recover? My abscess is inside the liver but they can not drain it due to my AVMs caused by hereditary haemorrhagic telangiectasia, if they hit one I'd bleed to death! Same reason no biopsy.

After 5 weeks not responded to antibiotics. I have a poorly lung with AVMs.

I think they referred me here as I have a rare condition, in fact most the doctors have not met someone with hht. There is also possibility I need a lung transplant too.

I'm hoping just liver but they are even thinking keeping me on iv antibiotics 3 months. This worries me as my liver has a tendency to fluctuate, sometimes I appear well then a few hours later I callapse with fever and scream in pain.

Glad thst your well at the moment, maybe they are just considering worse case so you're prepared?

[peteingloster]

Just had my 2nd assessment at Birmingham QEH, and they simply review the results from previous bloods, scans, ecg's, cat scans etc and if they look ok all systems are go! But all the very best anyway and all our good wishes for the future.