Wednesday 2nd November 2011
Paul has really done well the past few days and Doctors are happy to discharge him, but they have to be satisfied that you know what medication your taking, the dose and why your taking each tablet. It was a little daunting at first, all sorts of questions were arising, but that's just the initial shock. I'm so grateful that Paul has had a second chance to live a normal life. I'm not deluded in the slightest that its all going to be a walk in the park, but its upwards from here, Like I have said in earlier blogs the past two years have been challenging, emotional and very uncertain. Paul deserves a better and healthier way of life.
Just want to say hope all goes well for our friend Ben , who is going on transplant list. your a great bloke. you've got a great wife, mum and Dad who are very supportive.
Wednesday, 2 November 2011
Friday, 28 October 2011
Paul finally gets a liver transplant
Paul got a liver transplant on Sunday 23rd October 2011, It was very emotional for us both. Before I write anymore I would like to say that I will always be in debt to the donors family. Their loved one has given Paul the best gift ever, the gift of life. My thoughts and prayers will be with them forever.
Paul was in theatre for just under5 hrs. It was a huge relief when the consultant rang to say that everything went smoothly. Paul was in ICU for 24hrs. what fantastic people they are each and everyone deserve a medal, Especially Raz and Dean who were Paul's nurse's, they cared and looked after Paul with the utmost respect and clarity. He was then moved to HDU where again he met another angel Elaine. she was so supportive and gave Paul alot of confidence. God bless them all.
Tuesday 25th October
Paul transfered to the Liver unit, the staff on this ward are fantastic they work non stop and still have time to talk and make you feel welcome. Paul had to start his Immuno suppressant Tablets today, he also has painkillers to take as well and still has the epidural. one of his painkillers gave him terrible hallucinations and dreams, The doctors said they would give him a different pain killer. the physios have been around today, they encourage you to do different breathing exercises to prevent you getting any chest infections and gentle walks.
Wednesday 26th October
Paul isn't having a good day,very emotional , hes in alot of pain, and he is feeling very down which is bloody understandable.Hes just been through a big major operation and is on alot of different drugs. but we will take each day as it comes, tomorrows another day. We also became grandparents today, what a week first Paul gets a new liver, Man city thrash Man u (6-1) and then our beautiful Grandson Hayden Paul arrives.
Thursday 27th October
Paul's had a really good day today, his new painkillers have kept him pain free, he was in good spirits. Managed to eat a few spoonfuls of potato Ash I made for him. He mananged to take a few steps to the corridor, hes very tired but is finding it hard to sleep.
Friday 28th October
Paul felt quiet sick this morning, he was given some anti sickness tablets this seemed to do the trick. he had a lovely visit from Bill and Jen from Scarborough, Paul met Bill whilst they were patients on the liver unit. Bill has been an inspiration he has gone through two transplants, and is now leading a normal life. Paul has had his catheter, feeding tube and central line removed to day and even managed a tuna and cheese melt sandwich. The only way is onwards. Doctors are very happy with his progress.
Paul was in theatre for just under5 hrs. It was a huge relief when the consultant rang to say that everything went smoothly. Paul was in ICU for 24hrs. what fantastic people they are each and everyone deserve a medal, Especially Raz and Dean who were Paul's nurse's, they cared and looked after Paul with the utmost respect and clarity. He was then moved to HDU where again he met another angel Elaine. she was so supportive and gave Paul alot of confidence. God bless them all.
Tuesday 25th October
Paul transfered to the Liver unit, the staff on this ward are fantastic they work non stop and still have time to talk and make you feel welcome. Paul had to start his Immuno suppressant Tablets today, he also has painkillers to take as well and still has the epidural. one of his painkillers gave him terrible hallucinations and dreams, The doctors said they would give him a different pain killer. the physios have been around today, they encourage you to do different breathing exercises to prevent you getting any chest infections and gentle walks.
Wednesday 26th October
Paul isn't having a good day,very emotional , hes in alot of pain, and he is feeling very down which is bloody understandable.Hes just been through a big major operation and is on alot of different drugs. but we will take each day as it comes, tomorrows another day. We also became grandparents today, what a week first Paul gets a new liver, Man city thrash Man u (6-1) and then our beautiful Grandson Hayden Paul arrives.
Thursday 27th October
Paul's had a really good day today, his new painkillers have kept him pain free, he was in good spirits. Managed to eat a few spoonfuls of potato Ash I made for him. He mananged to take a few steps to the corridor, hes very tired but is finding it hard to sleep.
Friday 28th October
Paul felt quiet sick this morning, he was given some anti sickness tablets this seemed to do the trick. he had a lovely visit from Bill and Jen from Scarborough, Paul met Bill whilst they were patients on the liver unit. Bill has been an inspiration he has gone through two transplants, and is now leading a normal life. Paul has had his catheter, feeding tube and central line removed to day and even managed a tuna and cheese melt sandwich. The only way is onwards. Doctors are very happy with his progress.
Saturday, 22 October 2011
Fourth Transplant Call .22nd October 2011
We got the fourth call at 11. 32pm, I was getting ready to go to bed, Paul's mobile phone rang, we both looked at each other, we both knew it was the transplant Team, They asked us to get to the hospital for 1.30am. We both were very calm, I got our bags from upstairs, telephoned the kids, family and friends. I think we both were and still are in shock. We arrived at the hospital and were greeted by a nurse. we got our own private cubicle,Paul got his blood sugar, blood pressure and had bloods done. He also had an ERCG. We will know for sure if the transplant goes ahead at 6.30, if everything goes to plan Paul will go down to theatre at 8.30. My thoughts are with the donors family.
We waited for 12 hours until we were told that it was definitely going ahead. The twelve hours were the longest hours ever ,can't explain the emotions, at one point I just wanted to take him home, but deep down you do want it to go ahead, its just human nature to feel apprehensive. Suddenly the theatre trolly appears from know where. The walk down alongside Paul was such an emotional rollcoaster, but it seemed that I was walking for hours down to theatre. My brother and I just broke down, Its hard not to. we said our goodbyes, That was one of the hardest goodbyes ever. But what kept me going was that when I see my gorgeous Skippy again, he will be free of the dreaded PSC!!!!!!!!!!!
Friday, 14 October 2011
Third Call For Paul Friday 14th October 2011
We received a call at 17.10 telling us that they may have a suitable match for Paul, we were on our way to buy a washing machine. Just goes to show how u can just get a call , whilst your just going about your everyday routine. It was emotional but at the same time relief. My friends Diane and Simon god bless them drove us to Leeds, Our children followed in the next car. Paul was upbeat and the journey passed by as Paul was his usual mischievous funny self. We got to the hospital and were greeted by a nurse to showed us to Paul's cubicle. He had some bloods taken and shortly after a Dr came and told us that the transplant co-ordinator's wanted to speak to Paul, I knew then ,that it was very unlikely that the transplant would commence.
They explained the reasons, I had mixed emotions as this is our third unsuccessful call. But if it wasn't for people like the donor last night: then people like Paul wouldn't have any hope. God bless all donors and their families.
Our thoughts are with the Donors family.
We received a call at 17.10 telling us that they may have a suitable match for Paul, we were on our way to buy a washing machine. Just goes to show how u can just get a call , whilst your just going about your everyday routine. It was emotional but at the same time relief. My friends Diane and Simon god bless them drove us to Leeds, Our children followed in the next car. Paul was upbeat and the journey passed by as Paul was his usual mischievous funny self. We got to the hospital and were greeted by a nurse to showed us to Paul's cubicle. He had some bloods taken and shortly after a Dr came and told us that the transplant co-ordinator's wanted to speak to Paul, I knew then ,that it was very unlikely that the transplant would commence.
They explained the reasons, I had mixed emotions as this is our third unsuccessful call. But if it wasn't for people like the donor last night: then people like Paul wouldn't have any hope. God bless all donors and their families.
Our thoughts are with the Donors family.
Thursday, 6 October 2011
Thursday 6th October 2011
Waiting for a healthier and better way of life for my gorgeous SKIP
I haven't blogged for sometime, Paul's still waiting for a transplant, he's had an Gastroscopy and colonoscopy. Results show Varices , Anemia and Scarring of the bowel .Paul's health is poor, he has Endema (swollen feet,legs and ankles). He was recently diagnosed with Osteoporosis and has to take a tablet once a week, an hour before he gets up. He says its an awful experience and he suffers from alot of nausea.
Hes getting very tired and is very depressed, which is understandable. The transplant nurses have recommended anti-depressants. Paul doesn't want to go down this route, just wish I could do more. He can't sleep, hes got no appetite. even my lemon drizzle cake isn't working!. The itching is horrendous.
Like I said in my earlier blogs, its a waiting game. I'm in the middle of trying to promote the importance of blood and organ donation.
Sunday, 4 September 2011
The itchy and sratchy show
Itching and PSC go hand-in-hand. If you have PSC and haven't experienced itching yet, you probably will in the future. I personally consider it one of the worst symptoms because it tends to come and go for years and there is very little you can do to stop it.
As most PSC patients know, the disease involves inflammation of the liver's bile ducts. The ducts are unable to process and breakdown bile, so the bile gets into your bloodstream. The result? Itching (among other things).
Paul has tried all sorts of creams, but there s no relief in any thing he's tried. We were told by our friend Bill who use to have PSC, to try Aqueous menthol cream. That didn't give relief and with Paul's skin being broken we had to stop applying it.
Unfortunately, there is really nothing your doctor can do to make the itching disappear (and on a side note, Antihistmines are not going to help as the itching is not skin or allergy-related). The medication Urso is often prescribed to PSC patients and in some patients it helps manage the symptoms on the disease, but it is really hard to quantify. Paul is on Urso . I think it did help to some degree, but doesn't eliminate itching altogether. Another patient's experience might be completely different.
It's part of the dreadful PSC disease and Paul is at the end stages of this heartbraking illness.
The only thing that cure him of this, is a Transplant .
As most PSC patients know, the disease involves inflammation of the liver's bile ducts. The ducts are unable to process and breakdown bile, so the bile gets into your bloodstream. The result? Itching (among other things).
Paul has tried all sorts of creams, but there s no relief in any thing he's tried. We were told by our friend Bill who use to have PSC, to try Aqueous menthol cream. That didn't give relief and with Paul's skin being broken we had to stop applying it.
Unfortunately, there is really nothing your doctor can do to make the itching disappear (and on a side note, Antihistmines are not going to help as the itching is not skin or allergy-related). The medication Urso is often prescribed to PSC patients and in some patients it helps manage the symptoms on the disease, but it is really hard to quantify. Paul is on Urso . I think it did help to some degree, but doesn't eliminate itching altogether. Another patient's experience might be completely different.
It's part of the dreadful PSC disease and Paul is at the end stages of this heartbraking illness.
The only thing that cure him of this, is a Transplant .
Saturday, 3 September 2011
Paul urgently needs a Transplant
Sunday 3rd September 2011
Paul has had a dreadful few days, the itching is beyond ridiculous and it's heartbreaking to watch. This is end stage of liver failure. The Ascities and Endema have come along like parasite's. as if he hasn't got enough happening to him. I wish I could fix this horrendous disease, It's a heartbreaking position to be in, as theres nothing I can do, just to stay positive and have an optimistic attitude, very easy said than done.
I just want relief and a better way of life for Paul.I can see its getting unbearable for him.
Please god give him some relief.
Paul has had a dreadful few days, the itching is beyond ridiculous and it's heartbreaking to watch. This is end stage of liver failure. The Ascities and Endema have come along like parasite's. as if he hasn't got enough happening to him. I wish I could fix this horrendous disease, It's a heartbreaking position to be in, as theres nothing I can do, just to stay positive and have an optimistic attitude, very easy said than done.
I just want relief and a better way of life for Paul.I can see its getting unbearable for him.
Please god give him some relief.
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