Primary Sclerosing Cholangitis (PSC)
In primary sclerosing cholangitis (PSC), the bile ducts inside and outside the liver become inflamed and scarred. As the scarring increases, the ducts become blocked. The ducts are important because they carry bile out of the liver. Bile is a liquid that helps break down fat in food. If the ducts are blocked, bile builds up in the liver and damages liver cells. Eventually, PSC can cause liver failure.
Researchers do not know what causes PSC. Among the theories under investigation are the possible role of bacteria, viruses, and immune system problems. PSC appears to be associated with ulcerative colitis, a type of inflammatory bowel disease.
The disease usually begins between ages 30 and 60 and is more common in men than women. PSC progresses slowly, so a person can have the disease for years before symptoms develop. The main symptoms are itching, fatigue, and jaundice, which causes yellowing of the eyes or skin. An infection in the bile ducts can cause chills and fever.
PSC is diagnosed through cholangiography, which involves injecting dye into the bile ducts and taking an x-ray. Treatment includes medication to relieve itching, antibiotics to treat infections, and vitamin supplements, as people with PSC are often deficient in vitamins A, D, and K. In some cases, surgery to open major blockages in the common bile duct is also necessary. Liver transplantation may be an option if the liver begins to fail.
Wednesday 31 August 2011
Bone Density Scan
Wednesday 31st August 2011
Paul had a bone density scan today at Oldham royal hospital. This was arranged by the hepatologist Dr in Leeds,.As Paul has had alot of pain in his ribs and knees, this will also rule out Osteoporosis.The Radiographer was absoultely lovely, she admired Paul's optimstic attitude. We have met so many lovely professions through our journey with PSC. our experience with the NHS has been fantastic, we have met genuine, caring people. I want to thank each and everyone,they have treated Paul with dignity and clarity, god bless them all.
Paul is in need of a transplant as soon as possible. He is deteriorating, its one of the hardest things I have ever come across, jaundice, very fatigued, loss of appetite and the itching is dreadful, but thats PSC and end stages of liver. But he still hasn't lost his lovely personality, he still makes everybody laugh , our daughter Natasha brought her boyfriend Karl round last week and he can't believe how funny Paul is. A true inspiration!!!
Why Measure Bone Density?
Osteoporosis is a condition where bone is more porous than normal and therefore more prone to fracture.The condition is symptomless until a bone is broken and so it is difficult to pinpoint which indiviuals have fragile bones proir to fractures occuring.
With advances in technology and the development of bone densitometry it is now possible to assess bone density. Since low bone density is linked to increased fracture risk,Osteoporosis can now be diagnosed prior to bones breaking, giving indivuals the oppurtunity to take treatment and adopt lifestyle changes to reduce this risk of breaking bones.
Paul had a bone density scan today at Oldham royal hospital. This was arranged by the hepatologist Dr in Leeds,.As Paul has had alot of pain in his ribs and knees, this will also rule out Osteoporosis.The Radiographer was absoultely lovely, she admired Paul's optimstic attitude. We have met so many lovely professions through our journey with PSC. our experience with the NHS has been fantastic, we have met genuine, caring people. I want to thank each and everyone,they have treated Paul with dignity and clarity, god bless them all.
Paul is in need of a transplant as soon as possible. He is deteriorating, its one of the hardest things I have ever come across, jaundice, very fatigued, loss of appetite and the itching is dreadful, but thats PSC and end stages of liver. But he still hasn't lost his lovely personality, he still makes everybody laugh , our daughter Natasha brought her boyfriend Karl round last week and he can't believe how funny Paul is. A true inspiration!!!
Why Measure Bone Density?
Osteoporosis is a condition where bone is more porous than normal and therefore more prone to fracture.The condition is symptomless until a bone is broken and so it is difficult to pinpoint which indiviuals have fragile bones proir to fractures occuring.
With advances in technology and the development of bone densitometry it is now possible to assess bone density. Since low bone density is linked to increased fracture risk,Osteoporosis can now be diagnosed prior to bones breaking, giving indivuals the oppurtunity to take treatment and adopt lifestyle changes to reduce this risk of breaking bones.
Friday 26 August 2011
Two fantastic days
23rd and 24th August 2011
We have had a lovely couple of days, one at Bakewell and one of our favourites is Scarborough were our lovely friends Bill and Jenny live.But Paul is becoming very weak, his acities (swollen Stomach) and Endema (Swollen legs, ankles and legs). We urgently need the call. I have started a campaign to make people aware of signing the organ donor register.
His Itching has become frequent, its awful to see, its spread all over his hands, There isn't much comfort in anything we have tried, Bill has recommended a cream called Aquias with menthol, he used this when he had PSC. fingers crossed this will bring some relief.
One thing my Skip hasn't lost is his wicked personality, he still has us all laughing with his funny jokes and wind ups.
Upwards and onwards is the only way!!!
We have had a lovely couple of days, one at Bakewell and one of our favourites is Scarborough were our lovely friends Bill and Jenny live.But Paul is becoming very weak, his acities (swollen Stomach) and Endema (Swollen legs, ankles and legs). We urgently need the call. I have started a campaign to make people aware of signing the organ donor register.
His Itching has become frequent, its awful to see, its spread all over his hands, There isn't much comfort in anything we have tried, Bill has recommended a cream called Aquias with menthol, he used this when he had PSC. fingers crossed this will bring some relief.
One thing my Skip hasn't lost is his wicked personality, he still has us all laughing with his funny jokes and wind ups.
Upwards and onwards is the only way!!!
Tuesday 16 August 2011
A lovely day meeting Bill and Jenny Burns
16th August 2011
We had an appointment at St James today, was a little odd as we were only there last week, so when we arrived, one of the transplant nurses spoke to Paul, she apologised as it shouldn't have been sent out, but it was okay, he had a quick chat with Dr Aldersley and was given a slip for blood test. I was in the waiting room, then I heard the liver transplant social worker, Jacqui Gouge ( what a lovely individual always willing to help and advise, unfortunately shes leaving at the end of September, we will both miss her)she was walking along the corridor with a couple, Then couldn't believe my eyes, It was Bill who had become friends with Paul and I, along with his lovely wife Jenny.I was overwhelmed and we both greeted each other with a hug, I also gave Jacqui a big squeeze, shes been fantastic with us and I met Jenny for the first time, I instantly knew we would get along.
Bill had just attended his appointment and was going for his bloods, he said as he hadn't heard from Paul he was going to see if he was admitted to hospital. Paul then came out from his brief appointment, he was really happy to see Bill, (Bill has been a rock for Paul, as Bill also had Psc and has been through liver transplantation), its fantastic to know such lovely, warmth and friendly people. Paul and Bill went off for their blood test, Jenny and I went down to the cafe, we talked so much, it was lovely to share things that we both have experienced, meeting Jenny today has been really good for me, because she has and still going through things that I am experiencing. I felt like we both had know each other for years, but infact it was the first time I had ever met Jenny and we got on like a house on fire, we're going to see Bill and Jenny in a couple of weeks, which will be lovely. Its sad that were all going through this awful time, the one good thing is we have met a lovely ,genuine and admirable couple.
I got lots of ideas from Jenny, on sharing the importance of becoming Donors and letting people know more about PSC. Jenny has raised over £6000 doing various charity work and this has been donated to the Liver unit.
Paul is having an Endoscopy tomorrow morning, poor man it's always something. Hes had a few good days apart from the fatigue and the dreaded itch which is constant all day, no relief as nothing seems to work.
Going to stay optimistic, will finish with the famous words upwards and onwards!!!!!!
We had an appointment at St James today, was a little odd as we were only there last week, so when we arrived, one of the transplant nurses spoke to Paul, she apologised as it shouldn't have been sent out, but it was okay, he had a quick chat with Dr Aldersley and was given a slip for blood test. I was in the waiting room, then I heard the liver transplant social worker, Jacqui Gouge ( what a lovely individual always willing to help and advise, unfortunately shes leaving at the end of September, we will both miss her)she was walking along the corridor with a couple, Then couldn't believe my eyes, It was Bill who had become friends with Paul and I, along with his lovely wife Jenny.I was overwhelmed and we both greeted each other with a hug, I also gave Jacqui a big squeeze, shes been fantastic with us and I met Jenny for the first time, I instantly knew we would get along.
Bill had just attended his appointment and was going for his bloods, he said as he hadn't heard from Paul he was going to see if he was admitted to hospital. Paul then came out from his brief appointment, he was really happy to see Bill, (Bill has been a rock for Paul, as Bill also had Psc and has been through liver transplantation), its fantastic to know such lovely, warmth and friendly people. Paul and Bill went off for their blood test, Jenny and I went down to the cafe, we talked so much, it was lovely to share things that we both have experienced, meeting Jenny today has been really good for me, because she has and still going through things that I am experiencing. I felt like we both had know each other for years, but infact it was the first time I had ever met Jenny and we got on like a house on fire, we're going to see Bill and Jenny in a couple of weeks, which will be lovely. Its sad that were all going through this awful time, the one good thing is we have met a lovely ,genuine and admirable couple.
I got lots of ideas from Jenny, on sharing the importance of becoming Donors and letting people know more about PSC. Jenny has raised over £6000 doing various charity work and this has been donated to the Liver unit.
Paul is having an Endoscopy tomorrow morning, poor man it's always something. Hes had a few good days apart from the fatigue and the dreaded itch which is constant all day, no relief as nothing seems to work.
Going to stay optimistic, will finish with the famous words upwards and onwards!!!!!!
Wednesday 10 August 2011
Ascites and Jaundice
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.
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.
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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