Acute temperature and pain 3 months after transplant.

[Alicja_mb]

I thought everything was going well but at 4am this morning I woke in agony with a sharp pain on my right side just below my ribs and on my back. My partner got me a hot water bottle on my back and I fell back asleep. Then this morning about 7am I woke and my partner got the thermometer and my temperature reached 39.6 and has been the same even as I type. Getting a headache. I can actually touch where it hurts. Don't know what to do? I have felt tired last few days but this is scaring me. I had my transplant in April and thought I'd got my life back. Xx

[AyrshireK]

Ring your T/P co-ordinators today - this may need checking. Hopefully just a blip.

[jules45]

Hi Alicija, best to contact Freeman Hospital and get yourself checked asap

Love julie xxxx

[dizzime]

You must phone the transplant consultants immediately. They should get you back in hospital to check. Please don't worry but you must get it checked.My transplant was in the August and I had to go back in by the October as thet said I was rejecting. They upt my steroids changed some of my meds about and everything was ok and that was nearly 3 years ago. Don't hesitate and dont worry but do phone. All the very best. X stay strong and positive.

[Alicja_mb]

Thank you for the messages. Feels reassuring, I'm a bit upset as it had been going so well and came on very suddenly. I rang the ward at the Freeman and they said to go to A&E, had to get an ambulance as I couldn't stand up without fainting. I'm at Manchester Royal infirmary having checks, so far I need a blood transfusion and it looks like I may have a bile duct infection. Luckily the liver tests came back OK. Perhaps I came off my antibiotics post transplant too quick. They reduced the predsiolone so said it was safe to come off them last week. Going to go back on IV antibiotics again me thinks and looks like staying here a few days. Xx

[Hidden in reply to Alicja_mb]

How did you get Cirrhosis? I have read some of your older posts and it seems so odd. Is it from the blood disorder ? Was your pregnancy the cause? I have heard of some women getting Liver problems after pregnancy, but not during or at least not enough of a problem to get full blown Cirrhosis.

god bless.

[Alicja_mb in reply to Hidden]

The blood condition was the underlying cause amplified during pregnancy . I have HHT and had AVMs (these are like shortcuts in blood flow that the blood travels/leaks through instead of the normal capillaries) in pregnancy your body produces lots of extra blood to cater for the growing baby. This extra blood meant more pressure on the AVMs which I had in my liver and still in my lungs and hence I had liver and heart failure leading me to have an emergency c section and being considered for a triple transplant. The leaked blood in my lungs caused pneumonia which was resolved with antibiotics and embolisation of some of the AVMs, but liver was damaged from the liver failure where I got terrible swelling and HE, I got an infection of abscesses in the liver from where the blood leaked but they couldn't drain them as they would normally as they were surrounded by these AVMs. If the tried to drain I would of bled badly (I was on antibiotics for months but they only slowed the process rather than cure it) and transplant became the only option. I was lucky that they decided not to go for the triple transplant... I was terrified! But the most scary thing is the possibility of not getting a transplant at all when you end up too sick) which became a possibility when I did absymal the first time I did the bike test) They said it was a quite a unique situation. For example I wasn't put the waiting list with a UKELD score, instead all the liver transplant units in the UK do a vote and majority Yes approved it. Hope I explained it OK I'm confused by it all myself sometimes . I did find out the author Catherine Cookson had HHT and donated to the Freeman Liver ward. Xx

[Alicja_mb]

Has anyone else got portal hypertension post transplant? I'm not entirely sure what it is. Thank you in advance for your help! Xx

[AyrshireK in reply to Alicja_mb]

This is what DC Kimberly has and it is causing her repeated ascites issues even post transplant. Portal Hypertension is due to blockages in the liver causing a back up of pressure in the portal vein and is what causes varices, ascites and HE in those with cirrhosis.

If they are saying you perhaps have portal hypertension post transplant it is perhaps due to a blockage within blood vessels of the new liver which is not uncommon post transplant due to the transplant procedures of obtaining and preserving the donor liver. They'll need to explore this potential blockage, pre-transplant they would perhaps give a beta blocker medicine to treat the PH in post transplant it might need some minor surgical intervention (they talk about shunts and stuff).

Hope you get some answers and some comfort soon,

Katie x

[Alicja_mb]

Thank you Katie, I sometimes feel that they don't go into detail or explain at the hospital as they don't want to scare me. I just read it on my discharge letter, says biliary sepsis and portal hypertension. I don't have ascites apart from some round my ankles. Hope to not get HE again. I don't like the idea of more surgery as I've had a few in the last few months but if it solves and prevents future problems I'll ask my consultants in Newcastle next week what they plan to do about it. I've read a few of Kim's posts but didn't realise it was portal hypertension causing problems. It must be frustrating to get the same problems post transplant as before xx