9th August 2011
Paul is feeling really down today, not seen him this down before. He also looks very jaundice and the itching is very severe. Its a dreadful feeling when your whole lives on hold and that the person you love is getting poorly, but theres nothing you can do about it.
10th August 2011
Ascites have started on Paul's ankles and legs, back on protein drinks, he's slept for most of the day, still very lethargic. He's had no appetite the past couple of days, it's heartbreaking but got to keep strong.
Wednesday, 10 August 2011
Picking ourselves up
7th August 2011
Paul and I didn't have much sleep, we both we're deflated and it just gets you down, but I have picked my self up, I need to be strong for both of us. Our beloved Mancity are playing today, we have invited my brother Mebs, his fiance Selina and her two lads Lewis and Dale. It will do us good to let of steam watching the match. City lost to United but it was only a friendly,(well thats what the united fans were saying).
We had a lovely afternoon with everybody, lots of chats and laughter, Its great to see that my Skip hasn't lost his sense of humour. But I could see that the Fatigue was setting in, thats part and parcel of PSC, things happen rapidly.
Paul and I didn't have much sleep, we both we're deflated and it just gets you down, but I have picked my self up, I need to be strong for both of us. Our beloved Mancity are playing today, we have invited my brother Mebs, his fiance Selina and her two lads Lewis and Dale. It will do us good to let of steam watching the match. City lost to United but it was only a friendly,(well thats what the united fans were saying).
We had a lovely afternoon with everybody, lots of chats and laughter, Its great to see that my Skip hasn't lost his sense of humour. But I could see that the Fatigue was setting in, thats part and parcel of PSC, things happen rapidly.
Saturday, 6 August 2011
Got a second call but didn't go ahead.
Saturday 6th August 201
We got a second call today at 11.22 am, ten days since the first, The Transplant co- ordinator told us that the liver is initially for someone else, but they may be to poorly for the op, but to get to the hospital in the next hour so they can prep Paul, But Dr's are still going to decide if the other patient is going to be well enough to receive the transplant. We were both stunned, but started to get ready and informed our family.
I felt really numb but I had to be strong for Paul and I was calm and collective. Paul was still in shock but was ready. Just as we were setting off, Paul's mobile started to ring, it was the hospital, My heart was in my mouth, I could tell by the reaction on Paul's face that it wasn't going to go ahead. The other patient was going to have the transplant. I had mixed feelings because they rung us at 11.22am and then 11 42am to say it wasn't going to happen, the emotions that we both were going through are hard to describe. We both burst into tears, its one hell of a rocky road. We both are thinking of the other patient and their family, we're not angry with anyone, just frustrated with PSC and the two knock backs. Paul and I are strong (stronger than we think), we will just get on with our lives and enjoy every second together until we receive another call.
We got a second call today at 11.22 am, ten days since the first, The Transplant co- ordinator told us that the liver is initially for someone else, but they may be to poorly for the op, but to get to the hospital in the next hour so they can prep Paul, But Dr's are still going to decide if the other patient is going to be well enough to receive the transplant. We were both stunned, but started to get ready and informed our family.
I felt really numb but I had to be strong for Paul and I was calm and collective. Paul was still in shock but was ready. Just as we were setting off, Paul's mobile started to ring, it was the hospital, My heart was in my mouth, I could tell by the reaction on Paul's face that it wasn't going to go ahead. The other patient was going to have the transplant. I had mixed feelings because they rung us at 11.22am and then 11 42am to say it wasn't going to happen, the emotions that we both were going through are hard to describe. We both burst into tears, its one hell of a rocky road. We both are thinking of the other patient and their family, we're not angry with anyone, just frustrated with PSC and the two knock backs. Paul and I are strong (stronger than we think), we will just get on with our lives and enjoy every second together until we receive another call.
Dreaded itch and fatigue :(
Thursday 5th August 2011
Paul had a great morning, but then started to feel very fatigued and the dreaded itch had aggravated, its horrible to see your love one feel so tired all of a sudden. He's slept like a baby for hours, but feels very week, no appetite today, just had sips of water.
We received a phone call from the transplant team, to inform us that Paul's blood results had shown that his blood wasn't clotting as it should, he went for blood test and we're awaiting results.
Paul had a great morning, but then started to feel very fatigued and the dreaded itch had aggravated, its horrible to see your love one feel so tired all of a sudden. He's slept like a baby for hours, but feels very week, no appetite today, just had sips of water.
We received a phone call from the transplant team, to inform us that Paul's blood results had shown that his blood wasn't clotting as it should, he went for blood test and we're awaiting results.
A good day for Paul
Wednesday 3rd August 2011
Paul went swimming today, I was a worried at first, thinking he may do more harm than good, how wrong was I, he really enjoyed himself, surprising how little things we take for granted mean so much. I could see he was taking his time, years ago he would be off like a shot, but who cares were having such a fantastic day. Times like these are priceless.
Paul went swimming today, I was a worried at first, thinking he may do more harm than good, how wrong was I, he really enjoyed himself, surprising how little things we take for granted mean so much. I could see he was taking his time, years ago he would be off like a shot, but who cares were having such a fantastic day. Times like these are priceless.
Tuesday, 2 August 2011
Appointment with Transpalnt Team in Leeds
We had an appointment with transplant team today, they always check to see if Paul's muscles are weaking, they do this with a hand grip, Paul's seems to go down every time , it was 26 today, the last time it read 28. There going to send him for a bone density test. They are happy with his weight and the dietitian advised us to carry on with more protein, carbohydrates and protiens. He also had routine blood test. We met the lovely nurse who rang us for the call last week, she was sincere and optimistic, god bless them all.
On the way back home we went to see my old boss/ good friend, shes had a tough two years, but is doing really well, shes an inspiration, had a great afternoon full of laughter, quotes and history!!!!!. Paul and I really enjoyed ourselves.
Paul's going swimming in the morning, I think this will do him the world of good, I know it gets him down staring at 4 walls constantly. The Dr has said just to take it slowly with the swimming and I will make sure theres a homemade cherry cake and a lemon drizzle cake for when we get back, can't afford for him to be burning of calories!!!!!!!!:))
On the way back home we went to see my old boss/ good friend, shes had a tough two years, but is doing really well, shes an inspiration, had a great afternoon full of laughter, quotes and history!!!!!. Paul and I really enjoyed ourselves.
Paul's going swimming in the morning, I think this will do him the world of good, I know it gets him down staring at 4 walls constantly. The Dr has said just to take it slowly with the swimming and I will make sure theres a homemade cherry cake and a lemon drizzle cake for when we get back, can't afford for him to be burning of calories!!!!!!!!:))
Take each day as it comes
Sunday 31 June
Paul has had a great day today, seemed his normal, happy go lucky self. Had Friends round and we haven't laughed so much in months, It was fantastic and a real boost for me, to see him like that. Surprising how things ,we take for granted mean so much at difficult and testing times.
Monday 1st August
Its a fact with PSC no two days are the same, you have to take each day as it comes, Paul's itching has started, its awful because theres no release, no creams or medicines work, he became very fatigued this afternoon and started with a slight temperature, fortunately it went down later on in the night. We can't afford for Paul to have any infections, his immune system as you would expect with the disease is non existent.
Paul has had a great day today, seemed his normal, happy go lucky self. Had Friends round and we haven't laughed so much in months, It was fantastic and a real boost for me, to see him like that. Surprising how things ,we take for granted mean so much at difficult and testing times.
Monday 1st August
Its a fact with PSC no two days are the same, you have to take each day as it comes, Paul's itching has started, its awful because theres no release, no creams or medicines work, he became very fatigued this afternoon and started with a slight temperature, fortunately it went down later on in the night. We can't afford for Paul to have any infections, his immune system as you would expect with the disease is non existent.
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