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14th, 15th and 16th June 2011

Paul is recovering slowly but surely. he s going to continue to take antibiotics till we receive a new liver. Hes got to take frebusin protein drinks 3 times a day too. Paul was very downbeat today, Which is understandable, his emotions are all over the place, waiting for a transplant, is an emotional rollacoaster, going to bed and getting up, you always have the thought of is it today, that we'll will get that important call. your whole life is on standby.

 It's a distressing time for everyone, especially for Paul, but were going to be optimistic, this is not going to beat us. PSC is an awful disease, it has a nasty habit of throwing things at you, without any notice.
We had a dietitian visit us today, shes told Paul he has to eat more calories and the importance of having snacks and to ensure he has a snack before bedtime, it was quiet odd for a dietitian to encourage you to have more calories, but with end stage of liver disease, the liver can't store fats, therefore you have to intake on food.
Its upwards and onwards, we will get through this together, and I know there will be days of ups and downs. but it won't beat us.

Positive News 13th June 2011

Paul rang me at 9.37am this morning, his consultant at our local hospital came to see him, very positive news,  Paul is doing well, still on antibiotics and will be in hospital for a while.  He's still jaundice and is still very swollen, but this is part of his PSC, its the livers way of letting you know it can't cope with its job. Waiting for a liver transplant is a very traumatic time and a lot of people end up with infections and become poorly just like Paul, its all part and parcel of the rocky journey.

Paul is being put back on the liver transplant list this afternoon,I can't explain the jubilation I feel. Fingers cross that we find a suitable match, like I have stated in my previous blogs Paul's blood group is o negative, its all upwards and onwards and everyday is going to be precious.

Can't wait for my visit this afternoon, I have been very fortunate to be able to have time off, whilst Paul has been ill, I can go back to work in a few days, knowing that hes recovering slowly but surely. I will have my mobile with me all the time, waiting for that crucial call, that can give Paul a better quality of life.

12th June 2011

Went on my afternoon visit to see my lovely hubby, he  looked very jaundice today and his chest was very wheezy, he also had a temperature. He started back on his oxygen. Feet and abdomen still swollen, he looked very poorly again, I just wish he gets rid of the infections and gets better soon, just want him on transplant list, hes really suffered the past couple of weeks, seeing your love ones go through turmoil is a very sad and distressing time, especially when you can't fix the problem; but just  giving Paul emotional help and support makes it a little easier for me. I do believe in miracles, please mankind don't prove me wrong! Paul's son came to visit him today, hes going to see if he has the same blood group as him, which is 0 negative. It's all a waiting game, but first of all got to get Paul better. Writing this blog, helps me express what I feel and I hope it helps ,other people who are in the same situation. I still get up at night and check to see if I've missed the call, then reality sinks in when I see Paul isn't in bed.. Paul rung me whilst I was writing this blog, he said his feet  have become more swollen, he's raised his feet to see if this will help. Doctor coming to see him in the morning, lets hope all goes well.  As I was leaving the hospital,I bumped him to some people I know, they asked me who I was visiting, I told them it was Paul.  I mentioned he had PSC, which affects the liver, one of them replied "does he drink excessive alcohol!", I felt raged, I told them its not alcohol related and that Paul doesn't drink anyway. I always find myself explaing this. Maybe it's just me, but people shouldn't jump to WRONG conclusions!!!

11TH June 2011

Paul's legs, feet, ankles and stomach are very swollen, Drs have said its fluid which is infected .He's struggling to walk because of this and also getting out of breath very easily and his chest is wheezy too. He still looks very jaundice and it's getting him really down, his whole domain wasn't right today. It's getting him really down, which is understandable, I whinge at the slightest bit of cold, hes going through the mill. He's very strong minded and I know he will get through this testing time, My Skip's a fighter!!!!! Hes having injections in his abdomen, this is to prevent blood clots.

He had a surprise visitor today, Andy who he use to work with years ago came to see him, its ironic as I'm friends with his sister and we work together, lovely family. Visiting times are very precious to me, you can visit in the afternoon 3-4 and evening 6.30 8.00pm. He's had lots of visitors, The whole day drags waiting to go and see Paul,but the visits just fly by.

Paul's had no appetite for weeK, I took him a bowl of potato Ash, he managed to eat it, I was really happy, as I he hasn't been eating. He seemed more upbeat at the evening visit. Lets see what tomorrow brings!!!!!

Things no better 9th June 2011

I stayed at the hospital with Paul last night, he was very poorly, his ankles and stomach are very swollen. They took lots of bloods and Paul went for an abdominal scan which showed that his colitis was active. They also took samples of the fluid on his stomach, they are going to see if any bacteria grows in the next 24hrs. Paul has been passing urine and the drs think his kidneys are affected, they going to put a catheter to help.He looks so tired,poorly and lifeless. Hes had no appetite for a week, Drs  and nurses have been fantastic at the local hospital, Dr Mcfarlane, who is one of the gastro drs came to see Paul, he was very professional and said they will carry on with antibiotics, pain relief and albumin drips. He also said he had arranged for Paul to be put on the Gastro ward.

We said our goodbyes the medical unit staff, they were all fantastic, especially Liz, Kerry and Janice, they all treated him with the utmost care and clarity. Even Derek who ferried Paul around for his scans was fantastic.

We arrived at D6, the staff were very friendly quiet a few remembered us from the last time Paul was in, he continued with all medication for the day before, visiting time was coming to a close, I hate that part, but I was coming bk in 2hrs, it feels like a life time!!!!. As I left the hospital, the Drs came to see Paul. they said that they had grown the bacteria and it shows that Paul has septicemia, I felt as somebody had given me a huge slap. Why was this happening to my Skip ? ( that's Paul's nickname) They put him on more antibiotics.


Friday 10th June 2011
Paul is still very poorly, no appetite, feet, legs and abdomen very swollen, The drs are taking bloods to see if Albumin levels have improved, Paul is very tired today, coughing and wheezing too..
Please god get him better, whilst Paul is poorly, he has been suspended from the liver transplant list. what I have learnt the past few yrs, mths and weeks is my Skip, is an inspiration, not once has he complained, what ever life throws at him, he deals with it, hes not lost his happy go lucky attitude and not forgetting his great personality.

One of the worst days of my life 7th June 2011

I noticed Paul had a Temperature today, he looked really poorly, I gave him his usual medicines and he tried to get some sleep, but it was very uncomfortable for him, as not only had his feet and stomach swollen; he was complaining of chest, lower arm ache, he had the shivers and was finding it difficult to speak. I rung 999 straight away the ambulance was here in mins, they quickly assesed him, and were concerned with his observations. we got to the hospital and Paul was in alot of pain, the staff were fantastic and put a drip on him, they gave him morphine for his pain. a doctor came and assesed him,he said they would send him for a xray, after getting the results of both bloods and xray they said Paul has pneumonia.
He was put on a medical unit, they gave him antibiotics and pain relief through a drip. Paul's protein levels were very low too, they gave him albumin too.

I've never seen my husband so unwell, even when he had his variceal bleed, its been such a tough and painful time.

3rd, 4th , 5th and 6th June 2011 Paul still is still unwell

The past three days have been tough, the swelling is still there, rang the hospital, they said to carry on with protein drinks, Paul hasn't been out for a week, he looks very jaundice and very tired, still not sleeping, He actually said ,he wished that we could get the call, its all awaiting game. If anything his feet and abdomen look very swelled. going to wait till tomorrow and try and get to this root problem.

2nd June 2011

Paul isn't feeling good at all, his ankles and abdomin are very swollen, hes very jaundice, no energy, hes had his feet up to reduce the swelling, fingers crossed things will improve, hes a rough day today can't sleep due to discomfort.

Waiting Liver Transplant

Waiting for that crucial call, which could be anytime. It's a sad time knowing that a family will be losing a loved one: To enable lots of people like Paul to have a second chance of a healthier and better way of life.