Dan's liver transplant

Firstly sorry for the long gap! I spent April in hospital because of my kidneys being poorly and may was a nice quiet rest.

But June well, June was hectic to say the least. Got a call from the royal free at 2.00 am asking me to head down asap as a stand by for a liver that was allocated to someone else but might not be suitable. Obviously the hospital has to treat it like you are the first choice so blood taken, X-ray, ecgs, gown and teds and meeting anaesthetist and surgeons etc. unfortunately after all the prep and being nil by mouth for 14 hours I was informed that the liver had been transplanted into the first choice patient and I could go home.

7 days later again at 2am I got a phone call from the hospital saying that there was a potential liver and to head down but this time to not rush so I grabbed a little sleep and got there at 7 am. Chaos ensued I was told ‘my liver’ had arrived and was being tested, all the same rigmarole again except this time at mid day they took me to theatre for transplant!

I spent 10 days in icu which I hated I was able to go to the ward after 7 but there were no beds. I had some horrible side effects from various drugs, nightmares and hallucinations from anaesthetic and spasms in my back from an anti fungal drip. Then they thought I had an infection. Eventually I got up to 9 north in a side room and the real recovery process started.

I spent 10 days there but I had my own loo, a better bed and specialist nurses. Within a day they had me up and about.

The only issue was my kidneys were struggling, I’d had to have two lots of dialysis in icu once on the ward the doctors changed drugs etc and they slowly started to kick in. They are now back to where they were before the transplant.

I came home on July 3rd and have been working and resting in turn ever since. I feel good and feel like I’m improving all the time 😁

Had a call Wednesday this week at 2:30 am can we get to the hospital for 6/7 am they have a potential liver for us. Couldn’t go back to sleep who can blame us!

So 5:30 we leave and I drop Danny off as agreed as what can I do I need to be busy so I go to work. Danny then texts and says it’s his liver and they will take him down about 11am. Half hour later after the panic sets in he texts back and says “it’s happening now” so at 9:06 off he went.

The transplant was a long process due to all the scar tissue and this being transplant number 2 so he was in for a good 12 hours.

All went well and was in ICU late Wednesday night.

Spent the last two weeks in hospital as my kidney functions were not good crenatine levels are very high and they are trying to lower them. This involves lots of albumin and fiddling with my drugs.

After a couple of goes they now think that the portal vein issue is ultimately what’s causing the issue with my kidneys.

So it’s just a case of sitting and waiting and see what happens next. Transfer to the Royal Free has been mentioned but it’s hard to see an end to this at the minute.

It’s been a while since I posted mainly because there was nothing to say.

I’m back on the list, back being drained every two weeks with the added fun of being anaemic.

So the Docs referred me to the in house psychiatrist to talk to me and see how I’m coping. After going through my last 15 years of medical history she said I have suffered a lot of trauma and should be mindful of my mental health etc. for insight I’m going to list this trauma below.

Peritonitis

2 TIAs

Dislocated shoulder

Broken collarbone

Diabetic retinopathy

Frozen shoulder

Lost sight in left eye

Damage to sight in right eye

Kidney issues

Non alcoholic cirrhosis of the liver

Umbilical hernia

Liver transplant

Portal vein thrombosis

Relisted for liver transplant.

They say this is a lot of trauma and that I should by rights be curled up in bed all day crying. I’m not! I didn’t even consider it as trauma and honestly still don’t really.

It’s just life, you keep going till you can’t.

To quote Rocky Balboa ‘it ain’t about how hard you can hit! It’s about how hard you get hit and keep moving forward!’.

And to quote Granny Weatherwax ‘I ate’nt dead yet!’.

Well it’s been a few weeks since my last update – mainly cos not much has happened. they took me off of the list at the start of December to give the tinzaparin a chance to work and it meant a relatively stress free month as there was no chance of that manic phone call!

The clot is still in here and I don’t know yet if the tinzaparin is working to clear it. There are a few signs that it might be though. I get a drain every two weeks and it’s usually around 12 litres, which is the hospital max, with a bit left in me. Well on Christmas Eve we had a drain and there was only 8 litres in there so we hats positive.

I have clinic on Thursday as well as a ct scan and an cardio ultrasound scan. Hopefully these will show that the portal vein is clearing. If not I go back in the list for another transplant.

I really hope the drugs are working as the list is really stressful and the transplant itself is much bigger than I thought and is taking a long time to get over. Even though people point out it’s only been two months! Guess I’m just impatient. Plus hospital food sucks!

Hey guys just an update
Liver is great unfortunately the portal vein is blocked so I’ve been back in the royal free. They can’t unblock the portal vein so as of tomorrow they will have to put me back on the list for a second transplant. So back to having drains and an unknown wait etc. bit of a bummer really.

Ok today is 4 weeks since my transplant. I’ve been home 12 days. Yesterday I went to my weekly clinic appointment and was told that I looked amazing by Dr Patch. He said all the numbers and blood are good and kept smiling ( I’ve never seen him smile in two years!). He reduced my steroids and stopped a few other drugs and then sent me to have my staples removed. 72 in all but that’s because of the hernia op beforehand!

I’m so grateful to so many people- Surgeons, Doctors, Nurses, HCAs, physios and especially the transplant coordinators ( I sent them Krispy Kreme donuts!) they are all so amazing and hard working and if the governments come to their senses they will realise that despite issues the NHS and those who work for it are the greatest thing in this country and they should being paying these guys what they ask for because without them we are all fucked.

Obviously my family are amazing and have been through this all with me and held my hand and dried my eyes when I needed it – I love you guys.

Finally and certainly not least and maybe even the most important. To the donor and your family. I will never know you although now I guess you live on in me. Your choice, your gift, saved my life I can never thank you enough, I could never be as brave and generous as you were and I cannot imagine the pain that you feel in your loss. Please somehow know how grateful I am and that I will not abuse or disrespect your kindness. I will look after my new liver and do everything the Doctors say to make this transplant a successful story.

Thank you so so much.

Well after 15 days in hospital Danny came home on Friday and is doing well. It’s going to take a few weeks to adjust to what our lives will be like but I am so pleased to have him home and not having to spend 3 hours a night travelling and visiting him in hospital (not a bad thing but it wears you down especially when you have a full time job too)

Even when Danny was in hospital he sent me some flowers to work just to say thank you

I am so grateful for the family who donated the liver and possibly other organs I know this wasn’t an easy decision for them so I will be eternally grateful.

It was such a long week emotionally after calling an ambulance Saturday to being transferred to the Royal Free Saturday night. Op on Sunday and slow recovery Monday and Tuesday to them saying we have a liver Wednesday. And seeing Danny in IUC to seeing him today up and more himself.

Now comes the hardest part the long road to full health not just for Danny but the family too. We can hopefully get back to normal and do things as a family and not have to be on stand by waiting for that call. We have all been through so much in the last 2 years or so.

As I said op went very well doctors really happy with Dan. They kept him sedated most of Thursday and I think this due to him having the 2 ops in a short time so it was taking a bit longer to come round.

Melissa one home Thursday from Uni and she and Sarah went up after school and Jack and I went up soon after. He looked so well but so poorly too. We waited for the doctor last to their rounds before we left as we hadn’t been told much. They said they would keep him on the ventilator for the night if he’s breathing didn’t improve but would take it off Friday in the day all being well.

Dan had a letter board so he could talk as he still had tubes in. All he wanted was a drink of water and the tubes to be taken out but this couldn’t happen as his breathing wasn’t where they would want it.

I slept better Thursday after seeing Dan!

Friday again I was at work and we went up after everyone had finished work and collage. Jack and I went in to see Dan first and wow so much better tubes out and talking. The girls went in after us and they removed another tube so things are looking good

Saturday Danny’s sister came over and we the girls went to see Dan (Jack went to football a match Dan was looking forward to going to) it was good news yet again. The doctors are impressed with how well the liver is doing they stopped some more stuff and he had eaten all be it cold toast and tea as when that got brought in the doctors then came in. But he’s had food.

Looking like they may move him to a ward from IUC tomorrow or Monday

Hi Nicky here (the wife!)

What a busy week we’ve all just had. As Danny said drain last Friday back to Watford general hospital Saturday transfer to Royal Free Saturday night hernia op Sunday.

I went up to see him Sunday night wasn’t going to as I knew he would need his rest but he was ok and wanted me to come up so I did he was looking so much better than he did Saturday!

Went up again Monday and Tuesday after work took the kids up and they were happy to see him and he was to see them. Was thinking he could be home by the weekend as the doctors were happy with him.

But no Wednesday came and it really went crazy. Doctors came to see him transplant team came to see how he was and then they said “oh we have a liver for you, it will be here in an hour!” Turns out the liver was too big for the first person so Dan was next on the list. I get a call from Danny to say this (I’m at work and needed to leave my manager is very cool with it as I’ve kept them updated) so I go home drop my work stuff off and the puppy as he came to work with me! And off I go to the Royal Free.

I get there and Dan is just sitting on the bed waiting to see what’s going on lady comes in about taking the liver for research we I say we it’s Dans liver but we both have the same views if it helps then take it.

The transplant team come and say 95% match and they can’t see why it shouldn’t go ahead so can you please put the gown on and I’ll come back for you at 6.

And that’s what happened I walked to theatre with Dan had a cry said I love you and good luck then it hit me HE’S GETTING A LIVER!

I went home after confirming with family it really is happening. Had dinner way too much to eat and with that and the worry I was ill. Jack and Sarah looked after me told me off a lot and said I should go to bed and get some sleep.

Midnight I get a call it’s taken longer than what they had hoped to get the liver out of Danny due to the op on Sunday but it’s out and they are half way so to expect a call in a few more hours. 3am all done the doctor called me to say all went well and they would keep him sedated till the morning (it’s safer and were expecting this)

Part 2 to follow

Had my drain on Friday as usual – no problems was home and eating a nice curry by 7.30.

Saturday, however was a different story, started feeling a bit rough, light headed, weak and massive pain in my abdomen. Ended up getting rushed to Watford general at about 3 pm. They did a ct scan and inserted an ng tube up my nose and a catheter up my urethra. Many pains! And vomiting.

Watford called the Royal Free and I was transferred here on Saturday evening. Lots of Morphine and pain relief. Then on Sunday day lunch time they cut me open and fixed me. Luckily the bowel had full blood flow and hadn’t ruptured so the just pushed it back in and sealed it with a mesh.

Today, Tuesday, they’ve moved me from ICU to a ward and removed loads of tubes. I can already stand and use the loo so fingers crossed I’ll be home in a few days.

And the best thing is that my liver Doctor has said i don’t have to be suspended from the list so I’m still queuing for a new liver!

Been a quiet couple of weeks, had my 6 weekly check and my exalt meeting.

Nothing new or exciting in either. Several vials of blood taken again.

This time they sent me the results which is unusual but was interesting as I could see various bits of info. My cholesterol is a little high etc.

Drain again on Friday. Going every two weeks is starting to feel normal and it definitely shouldn’t.

Had my 6 monthly check with my doctor at Watford on Tuesday who told me they had found something unusual on the photos from my endoscopy! So I very nervous 48 hour wait until Thursday when they sent the camera down my throat again to double check. On the plus side more fentanyl!

The endoscopy showed that whatever the unusual thing that they saw has now gone and was nothing to worry about- probably caused by the nausea and vomiting I was having before they prescribed the anti sickness pill.

So that was all good in the end.

Friday was my third visit to Watford general in a week, this time for my two weekly drain.

And of course nothing ever goes smoothly. First the blood taken was rejected for testing for some reason. So they took it again resulting in being stabbed in both arms.

Then, when the drain was being inserted we had the registrar, a junior doctor and three students observing. Unfortunately the first attempt failed leaving me with a big old bruise and a hole in my right side. Eventually they managed to fit it on the left side. 12 litres again. Albumin once again took ages to prepare so I spent two hours being drained and four waiting for the infusion.

I’m bloody knackered!

Just a drain last week! No appointments or urgent calls etc.

Have noticed that the blood thinners mess with zits, scratches or the littlest of knocks. Bumped into the door and had a bruise on my side like I’d been thrown across the room!

4th call! As a standby as the donor liver might’ve been too big for the number one receiver!

I was in Clacton visiting my parents and had only been there half an hour! Raced back to the Royal free went through the process again, ecg, blood, Covid test, mrsa test and so on.

Then the news it was too big for the original recipient, unfortunately it was manky and no good for anyone. ☹️

Still got to keep hoping that the next call is the one.

Had my third call last night. Different from the last two as the donor was still alive but brain dead. I got to the hospital at 11:30pm and started the routine tests- 10 bottles of blood, ascetic tap, ECG, chest X-ray, covid and mrsa test. Got to my bed at 3am. At 3:30 they told me that although the donor had passed there had been a delay harvesting his heart which meant that the liver and other organs had deteriorated too much to be used.

Gutted.

Yesterday I had an endoscopy because of the nausea and vomiting.

I was gonna say not fun but to be honest it was very quick and straightforward.

They numb your throat with some spray then sedate you with a bit of fentanyl- this stuff is great by the way!

By the time the camera goes down I was so out of it I missed the whole exam and only really came to in the recovery room.

They said there’s some swelling and have given me some anti sickness medication to combat the issues. I get to go back in 8 weeks and do it all again!

Yesterday was drain day. Now, usually when I have a drain for every 3 litres I get a drip for a bottle of albumin. I was told this is to protect your kidneys and prevent your blood pressure dropping. Yesterday they told me that there’s a national shortage of blood products and that they were only prescribing 1 bottle of albumin for every 5 litres drained. Now my kidneys are in good shape and my blood pressure is also good so it doesn’t affect me much but I had a google and bloody hell we are low on everything and there are alert warnings and rations in place for all blood products especially type O.

So here’s the link if you can spare an hour and a pint of blood or plasma or platelets or all three the please sign up and donate. You’ll save lives and they give you a cup of tea and a biscuit.

https://www.blood.co.uk/

Yesterday was my third six week check up and all seems good they are going to book me and appointment for a camera down my throat to make sure everything is ok and still working.

Only four bottles of blood taken this time!

However, there was one wrinkle in the visit when the nurse told me my daughter could wait there. The daughter in question being my 43 year old wife whom only two years younger than me! How old must I look?

Made Nicky’s day though!

This week started off with a massive shooting pain in my side and on calling the transplant coordinator they advised me to go to A&E.

Apparently I have a grumpy gall bladder and they won’t do anything about it because they take it out when they do the liver transplant! So lots of pain killers and stuff it is.

Then yesterday was drain day where the doctor who inserted the drain – who I’d seen many times before decided to give me a sermon on not relapsing into alcoholism after the transplant. He was very sheepish when I pointed out if he’d read my notes that he would see my liver failure has nothing to do with alcohol but diabetes and virus and bad luck of genetics.

Idiot.

Today marks my 100th day on the waiting list. On googling the figures the average wait in the uk is 150 to 240 days so I’m still inside the average waiting period.

There is also around 650 people on the liver transplant list in the uk so I’m guessing I probably have a bit of a wait 😢

Firstly I am 100 percent behind the junior doctors striking. They deserve so much more money than they get and it’s ridiculous to think an MP gets paid more.

I just wish they’d stop booking the strikes on days I’m supposed to have a drain! So I’m delayed till Tuesday. No biggy it’s just 4 days.

However, I also got a message to say I had an appointment for a fibroscan. Ok cool can arrange that. 1.20pm. At 10.30 am I get a call to ask me to go earlier at 12.30. Ok juggle things about rearranged my lift and left home at 12. At 12.10 I get another call to say ‘actually you aren’t having a fibroscan it’s all a mistake as I was supposed to see the specialist liver nurse who is off sick so come in on Tuesday for your drain and they will see you then!’

It’s never straight forward is it!

Weak, tired, achy and sore but not alone! Found some help and suggestion on of all places a Facebook forum!

Several recommendations of things to try later and I’m on the protein shakes and high protein recipes- lots of salmon, eggs, chicken and veg and I’m not kidding on the last two days I’m starting to feel stronger and more awake. Not like one of those gym bros but I now feel like I can walk round the shops without a rest or a nap after making a sandwich.

It’s a positive and I’m happy to take it! Thank you Liver transplant group on Facebook and thanks family for helping. Bring on the transplant.

8.00am – Went to the education talk at The Royal Free yesterday with all 3 kids. Danny was still waiting on Renal when it started so he joined us halfway though. There is ALOT of info to take in so much so they said they can email that over which I think would be good.

On the way home i think everyone was tired as in the car no one was talking and for anyone who knows Sarah this is not like her!

When we got back I had a chat with Melissa – she made me laugh she said she could see me processing everything that was said like oh I get that or oooo thats not good.

Text Danny this morning as hes going to have the TIPS widened again – under local but i dont think thats good as last time he was there for 2.5 hours and he had to go again under general as it failed.

Right should start work!

10.10am – I have just spoken to my manager about yesterday and some of the stuff that was discussed and I’m feelking very overwelmed, all I want to do is cry just to have that release of emotions. As its not just Danny that’s going though this its the whole family and it’s us that normally get forgotten about.

Danny has just text to say hes being taken down to pre op so he will text when back in the real world.

Yesterday I went to work and held it together well only had a few tears at the end of my day and as someone said some really nice stuff to me and that ment alot to me.

I should have gone to bed earlier than what I did as today I’m really tired so early one tonight.

Danny has had a few assessments this morning and we only needs to go next Thursday the day i have my MOT booked in for but we shoukld be home by then (fingers crossed)

Kept Sarah (our youngest) off school today so she can come with us today for the information day (her school have said they will support us while this is going on)

Just getting ready to go to The Royal Free but he girls (Melissa and Sarah) went out and the dog Finn was very vocial last night not sure if she knows something is up.

Hi my name is Nicky and I’m Danny’s wife.

The reason I am writing this this to give you my side of the story as everyone seems to forget there is more than the person going though this there is always someone else that is having to go though this too so this is my side of what has been going on .

I started to hand write this as this is better for me, so now I am typing this all out. ( I know more work for me but it’s just me)

So this all started back in 2022 Christmas where we thought Danny was consitpated so we called the doctors and explained this and he had tried all the normal methods but that didnt work. So by now its January 2023 and sometime in Jan we went to A&E and we sat for hours on end we were seen and we decided it best for me to go home and get some sleep as there was nothing I could do. It would be a ruff few days I think he spent the week on Cassio ward in Watford General where they found the cause of the bloting and this is where the long journey starts. Many drains and hospital stays.

Danny has had 2.5 TIPS and we were waiting for the 3rd at the time I first wote this. The 1st one didnt work well 2nd failed (thats th 0.5 mone) so the 2nd full TIPS worked and the drains after this one were every 3 weeks and not evry 2 weeks. But because the 2nd TIPS worked but not as well as we hoped Danny was still producing more than the day unit could drain so one more stay in hospital to get fully drained and back to 2 weekly drains.

Over the last year we have been to The Royal Free a few times mainly to have the TIPS done and to talk about the TIPS. But this year back in January we sae Dr Patch’s team and this is where it was decided that we needed to head down the transplant routefor liver and possibly kidney. We kind of knew this was on the way as the liver nurse in Watford had talked to Danny about this at one of the visits when he was having a drain. She used to work on the transplant team so could answer a few questions which was really nice.

Well that conversation hit really hard to hear it from the doctor in person.

We have had a few more drains since then but 3rd March i dropped Danny off at The Royal Free in the Pears building as tomorrow he starts all the tests to see if he can cope with a transplant and to see how his general health is.

I have to say the Pears building is very nice its just like a hotel and not feeling like a building connected to a hospital, so please dont worry when your time comes.

So all week I have been feeling OK about next week but now I have left Danny there I am worried and anxious yes I know this is all normal, it’s the not knowing what will happen and what the out come will be I just hate not knowingand not in control BUT we knew this anyway and by we I mean me and this is something I am working on and this blog will be one way of dealing with things.

So for now I’m done for tonight I have work in the mornin g and need to get ready.

I’m tired, I mean mentally and physically exhausted, this is I’m told completely normal and to be expected but it really puts a damper on your day, especially when you want to sleep for 12 to 16 hours but have a life to be getting on with! Roll on universal basic credit then we can all afford to be sick and pay rent still!

One of the reasons for the tiredness is that it’s a side effect of several drugs I’m on. One of them has 44 possible side effects, none life threatening but on our last count I can claim 17 of these including tiredness, itchy eyes, flatulence, frequent urination, cramp, aches etc. my wife though has been disappointed by the fact that I haven’t suffered from ‘frequent, unexpected and prolonged erections’ admittedly I don’t have the energy even if I did!😂

There’s not much to update really, nothings happening.

Still haven’t prescription issues with the GP. And still having a two weekly drain – next one tomorrow.

Trying to keep positive and thinking good thoughts but after a flurry of activity in April with calls etc May has been quite tame. Which should be nice but to be honest it’s a bit deflating.

Still tired and still waiting….

Ok. No more warfarin because it doesn’t get a chance to work if I stop it every two weeks when I have a drain! This means I stay on timzaparin. This is not fun as it involves daily injections into my stomach.

On top of this it’s almost impossible to get a prescription for it as you have to get past Cerberus at the GP’s reception to try and talk to a doctor.

I don’t mind waiting for a transplant but bloody hell they should issue a warning about the lack of communication and in some cases empathy between various departments and teams. One GP I talked to hadn’t even read my notes so just rejected the prescription request as he didn’t see why I needed it.

Urgh stress.

Not even kidding wake up on Saturday go to the loo – it’s looks like a scene from a gore movie in the bowl. Dial 111 and off to A&E again. 5 hours later they tell me you have blood in your urine because you’re on blood thinners! No shot sherlock! I told you that 5 hours ago! Now have to keep an eye on it till Tuesday for the next warfarin clinic. Really not a fun day!

Sounds better than warfarin.

Finally got an appointment and the first lit of blood taken. Now have to wait for the results later today to find out what dosage to take. They’ve given me a few different ones. They also give you a card to show you are on warfarin in case you have accident. Plus you can get nose bleeds and brain bleeds and god knows what else. If you bash your head you have to go to A&E just in case.

I also have to go every Tuesday and Thursday for blood tests to check the levels in my blood.

This is so tiring.

And I’m sure it’s only going to end up with more but urgh what a butt ache.

Until last week I took:

Metfornin

Apixiban

Fluoxetine

Amlodipine

Ciproflaxin

Co-amilifruse

Empagliflozin

And hux d3 20000 (vitamin d).

Most of these prescribed by the specialists at the hospital.

Last week my hepatology consultant stopped the apixiban and prescribed timzaparin injections until they can get me a warfarin clinic.

Timzaparin is a bloody great injection once a day. When I had to take insulin it was easy cos it was in any epipen and you just changed the needle each time.

Timzaparin needle is about an inch long and you have to inject into a fatty part on your abdomen. It hurts and bruises and leaves me feeling knackered. I really hope the warfarin is in epipen form!

On top of all this every time I have to ask for a repeat prescription I have to call my gp and argue over what’s been prescribed because they can’t check the notes or blood results because they are Beds and Herts nhs and the Royal Free isn’t!

I know they are just doing their jobs but they really know how to make things more difficult unnecessarily!

Oh well another drain tomorrow….

Got a second call last night at 7.15.

Came down to the royal free had all the blood tests and stuff again and then had to wait to see if the donor liver was good enough.

At 9.30 this morning it was decided that it wasn’t good enough and everything is cancelled again.

I’m gutted but I knew what to expect. I really wish the coordinators would stop trying to cheer me up as it’s just making me feel worse.

Just waiting for the paperwork and then I’m going home to eat and sleep.

So after today’s drain I got a call from the liver specialist nurse asking me to book some blood tests for next week. No worries booked in and ready. I told her about my ‘trial run’ last week and she seemed surprised and said ‘it’s good you had a trial run and that you’ve had one already probably means you won’t be on the list very long!’

This is positive news and made me happy.

An hour later I got a call from the royal free and my consultant there wanted to discuss my medication. I’m on apixiban blood thinners and he wants to change it to warfarin because it’s easier to reverse. Now my Nan was on warfarin and it’s a pain in the arse you have to have weekly clinics and blood tests and you get nose bleeds and stuff. However his reasons made me even more positive, he said ‘apixiban is difficult to reverse if you are waiting for surgery so I’d like you on warfarin and I’m gonna write to your GP etc to set that up, but the reason for this is because warfarin can be reversed easily with and injection so won’t hamper major surgery and since you are close proximity to the hospital and because of your blood type etc I expect you to be transplanted sooner rather than later!’

So that’s two experts in one day saying they don’t think I’ll be waiting long for the transplant.

Watch how I’m still waiting in a year 😂

Yesterday was my 2 weekly drain day and as usual it was a palarva.

The unit which does the drain has a policy of only having a drain in place for 4 hours or until 12 litres is drained, which ever is first. This is normally not a problem but there was an issue with my last drain meaning they only took 6 litres. So yesterday when the drain was put in the doctor said ‘continuous drain 6 hours’ now normally the nurses follow the doctors notes and leave me to drain away emptying the bag and transfusing me with albumin every 2 to 3 litres. However the nurse was unhappy with the doctor going against the units policy and after I hit 12 litres in 2 hours clamped the drain and wanted to remove it. Now when you’re being drained you can feel how much is in you and if you are carrying quite a lot. I asked could the drain stay on for the standard 4 hours because there wasn’t loads left. This led to an argument between the nurse and the doctor. The nurse wanted to stick to protocol and would only leave the drain in place of the doctors documented it because she didn’t want to get in trouble. Anyway it was sorted and the drain stayed in for 4 hours and drained just under 15 litres of ascetic fluid.

Its important to understand that both the nurse and doctor are trying to do what’s best for the patient but it seems sometimes they are finding their hands tied by out of date and rigid protocols which end up causing the patient to suffer more than is necessary.

Still ive been emptied out and get to go again in two weeks!

Got a call at 10:30 this morning and it was the royal fee. They had a liver for me. At this point they said that they had to run tests on it to confirm it was viable so the chances of the transplant happening today were 50/50.

I grabbed my bag and shot down there, then the wait began. I saw the anaesthetist and I had three lots of blood taken a total of 18 vials, I had a chest X-ray and a tap done on the ascetic fluids. At 4:30 the surgeon came to tell me that the liver wasn’t viable and that there would be not transplant today.

To be honest 5 hours was a short wait time and I’ve only been on the list for a month so it’s not a massive blow but I won’t lie and say I’m not gutted that it isn’t happening today. In my head I was already planning things I could do again in the summer!

Oh well still could all be done before then.

hello this is just a test post to see if i can figure out how to get things working and allow you all to comment.