Paul had a good start to the morning, but later in the afternoon he started with Tremors, first his hands and then it continued down his leg on the right hand side. Before he came out of hospital he had numbness on his finger tips and some mild tremors; the doctors said it was the side affects of the Tacrolimus. I was aware of this but I was taken back by this. I just held his hand and with time it eased off.
This happened again around about 6 am Saturday morning, Paul was sleeping the shaking woke me up, I froze for a minute then I just put my hand on to Paul's and tried to comfort him as he was shaking quiet violently, He was finding it difficult to come round, I stayed Calm and eventually the tremors stopped, it was an awful experience for us both especially Paul, I rang the hospital they said it's the side affects and just to keep an eye on him.
Since being home I take Paul's temperature everyday and jot down each reading so far so good.
He then went on to have a good day and had his favourite chicken curry again. I love him, he's my star.
We even manged to go to Selina's house (my brothers lovely girlfriend) to watch our beloved City, which was really nice as we had been restricted before the transplant. They won which was fantastic then our son Mikey rang up to see if we would look after baby Hayden, he didn't have to ask twice.
We dropped Mebs,Selina and lewis off at Heaton Park and then went home straight home. As soon as we got in Hayden was dropped off, he's such a gorgeous happy baby. It was the perfect end to the day. Granma, Grandad and Hayden Paul
Sunday, 6 November 2011
Thursday 3rd November 2011
Wow can't believe Paul actually is up and alert, he's full of life, which I haven't properly seen for nearly two years, he's more alert and the the whites of his eyes are glowing (this may sound bizarre but Paul was very jaundice and his eyes were very yellow when he had PSC). HE came shopping to Tesco's with me I was worried thinking it was to much for him,but he was adamant that he was coming in rather than wait in the car.
I know he hated being restricted to staying indoors, as he was unable to walk and became out of breath very easily. It was a lovely feeling knowing that my hubby was coming back, we always use to do everything together, but the last 8months were difficult and heartbreaking.
Paul's second day back at home and he has a new favourite meal Chicken curry, He liked curry before his transplant but not everyday, I don't care if he wants a homemade curry everyday it's a pleasure to see him eat. He use to have a sweet tooth, but it doesn't take his fancy anymore.
Paul is on a total of 31 Tablets a day, 3 being anti rejection tablets (Prednisolone, Mycophenolate and Tacrolimus), Omeprazole which is for anti-acid, Co-Trimoxozole which is a Prophalatic Antibiotic, Aspirin which thins the blood, Calceos which is a calcium and vitamin supplement, Asacol which is for Paul's Ulcerative Colitis, Dihydrocodiene and paracetamol are for pain relief and Alendromic Acid once a week for his Osteoporosis. Frebusin energy drinks and shots for energy.
He's had a superb day,everyday is a special one and we will take each day as it comes.
I know he hated being restricted to staying indoors, as he was unable to walk and became out of breath very easily. It was a lovely feeling knowing that my hubby was coming back, we always use to do everything together, but the last 8months were difficult and heartbreaking.
Paul's second day back at home and he has a new favourite meal Chicken curry, He liked curry before his transplant but not everyday, I don't care if he wants a homemade curry everyday it's a pleasure to see him eat. He use to have a sweet tooth, but it doesn't take his fancy anymore.
Paul is on a total of 31 Tablets a day, 3 being anti rejection tablets (Prednisolone, Mycophenolate and Tacrolimus), Omeprazole which is for anti-acid, Co-Trimoxozole which is a Prophalatic Antibiotic, Aspirin which thins the blood, Calceos which is a calcium and vitamin supplement, Asacol which is for Paul's Ulcerative Colitis, Dihydrocodiene and paracetamol are for pain relief and Alendromic Acid once a week for his Osteoporosis. Frebusin energy drinks and shots for energy.
He's had a superb day,everyday is a special one and we will take each day as it comes.
Wednesday, 2 November 2011
Paul comes home 10 after transplant
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.
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.
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.
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