I can't remember the exact date it was sometime in 2001 that I started to notice that when I went to the toilet.There were specks of blood around the toilet bowl, for the first few occasions I just left it. But as time went on the amount of blood started to increase till I decided to mention it to my wife and we made a appointment to see our Doc.
Our Doc did his checks on me (wont go in to detail but it involved bending over) and decided to send me to hospital for blood tests and to see a Gastroenterologist.
I have since found out in numerous conversations with people, that alot of people can see blood after going to the toilet and tend not to say or do anything about it. Mainly through not feeling comfortable to talk to someone or go to the doc because of feeling embarrased. (which is exactly how I felt)
But I can't stress enough how important it is to see someone straight away if these symptoms start to show.
After my blood tests I was sent an appt to have a colonoscopy under the care of my new consultant Dr Klass at North Manchester General Hospital.
With the letter came a box with 2 sachets of a lemon flavoured drink and the details of what a colonoscopy entailed and instructions for the lovely Lemon drink.
A Colonoscopy is a procedure were a long flexible tube with a camera and light on the end are pushed into your bum and all the way round into your colon.
Also on the end of the tube are a very small pair of sharp what I can only describe as clamps that will clamp on to the lining of your bowel and colon and pull off small samples of tissue for analysis.
The day before your procedure you are not allowed to eat or drink anything apart from the lovely Lemon drink.
One sachet of the drink is emptied into a jug and mixed with 2 litres of water to drink by the glass followed by the 2nd sachet.
After about 3 glasses your tummy starts to make all sorts of gurgling and other strange noises then for the next few hours the toilet will become your new best friend.(happy days)
All this is one to clear the bowel and all connecting bits so when the camera is in the doc can get a clear view of the lining of the Colon and surrounding areas.
On the day of the procedure you are asked to strip and put on a gown that fastens at the back.
I was also asked if I would like sedation or to go ahead without.
At this point I asked the opinion of the nurse who said "she believes the procedure can be uncomfortable, but not painful and said if I didn't have the sedation I could go home more or less straight away if everything went well.(The main problem with this procedure is a small tear to the lining that could cause bleeding however this is very rare) .So with the thought of being able to go home straight away decided to be brave and go without sedation. (BIG MISTAKE).
So I'm lay on a table on my side with my knees up to my chest and waiting for train to enter the tunnel.
Now I'm also able to see the monitor the doc is looking at, as the flexible tube is moved round bend after bend till it reached the Colon.
The really uncomfortable bits are when air is blown from the tube to keep the lens clear so the view is clear, you feel like your tummy is going to blow up and burst, the word uncomfortable was not how I would describe it.
Anyway samples were taken and it was all over in around 25 mins so not too long.
Little did I know that this was the beginning of mine and Naz's 10 year journey to Liver transplant.
Paul Spencer 27.11..11
Sunday 27 November 2011
Thursday 24 November 2011
Its me Skippy!! Finally.
Firstly I would like to thank everybody who has shown me love and support throughout the last 7 years since I was diagnosed with Psc. I include in that Family and friends, everybody at Northern rail my employers and all of you for taking the time to read this and share a small part of my journey to Liver
Transplant.
But thankyou can never express what I owe to the most fantastic wife I could have wished for.
Naz you have got me here, you have picked me up when I was at my lowest, you had faith enough for us both, and the strenghth to be here not only for me but to continue to love and support the rest of our family single handed.
I LOVE YOU X
Over the next few weeks I am going to try to put into words my journey from being diagnosed with Psc to the eventual Liver Transplant, my feelings and emotions so that maybe they can be of help or comfort to anyone who may be suffering the same.
As I write this I remind myself that I am by far from being able to relax within myself as I am barely 5 weeks post transplant and still have a way to go for my first milestone of 1 year. But so far so good.
Paul Spencer. 25.11.11.
Transplant.
But thankyou can never express what I owe to the most fantastic wife I could have wished for.
Naz you have got me here, you have picked me up when I was at my lowest, you had faith enough for us both, and the strenghth to be here not only for me but to continue to love and support the rest of our family single handed.
I LOVE YOU X
Over the next few weeks I am going to try to put into words my journey from being diagnosed with Psc to the eventual Liver Transplant, my feelings and emotions so that maybe they can be of help or comfort to anyone who may be suffering the same.
As I write this I remind myself that I am by far from being able to relax within myself as I am barely 5 weeks post transplant and still have a way to go for my first milestone of 1 year. But so far so good.
Paul Spencer. 25.11.11.
Tuesday 22 November 2011
Registering Paul with a Dentist
Monday 21st November 2011
Managed to get Paul registered with a Dentist today. What a friendly bunch they couldn't believe that it was only 4weeks since his transplant.Saffia the Dentist was very professional and put Paul's mind at rest and Kelsey was fantastic too Paul was advised to get any dental work done by the Transplant team before he was discharged. This is because if you need any dental work and its not treated you may get an infection and with Paul's low immune system it's not advisable. They also said whilst hes on anti biotics for the next three months, to get any dental work done. Hes having a couple of fillings next week. he's quiet scared, he says it sounds silly because hes had a transplant and that the dentist should be a walk in the park. But I know a lot of people that are scared of going to the dentist, I'm one of them.
Managed to get Paul registered with a Dentist today. What a friendly bunch they couldn't believe that it was only 4weeks since his transplant.Saffia the Dentist was very professional and put Paul's mind at rest and Kelsey was fantastic too Paul was advised to get any dental work done by the Transplant team before he was discharged. This is because if you need any dental work and its not treated you may get an infection and with Paul's low immune system it's not advisable. They also said whilst hes on anti biotics for the next three months, to get any dental work done. Hes having a couple of fillings next week. he's quiet scared, he says it sounds silly because hes had a transplant and that the dentist should be a walk in the park. But I know a lot of people that are scared of going to the dentist, I'm one of them.
Tremors
Sunday 18th November 2011
Paul had a horrid night the shaking was awful, it actually woke me up. Paul was semi conscious, I remained calm and talked to him, he slowly started waking up. The shakes lasted a lot longer than the ones hes had before. When we was fully awake the shaking continued for a while. but it still remained on his right side. I sat him up and gave him a sip of water.
It settled with time and he went on having a up and down day, his appetite wasn't good. We have learnt to take each day as it comes each day is special to us. Where going to have bad and good days but going to carry on with optimism and positiveness.
Paul had a horrid night the shaking was awful, it actually woke me up. Paul was semi conscious, I remained calm and talked to him, he slowly started waking up. The shakes lasted a lot longer than the ones hes had before. When we was fully awake the shaking continued for a while. but it still remained on his right side. I sat him up and gave him a sip of water.
It settled with time and he went on having a up and down day, his appetite wasn't good. We have learnt to take each day as it comes each day is special to us. Where going to have bad and good days but going to carry on with optimism and positiveness.
A lovely afternoon At Vi's house
Thursday 17th November 2011
We went to see my close friend Vi, shes such a strong, caring and genuine person. She has been very poorly with cancer. But has always kept in regular contact to see how Paul has been doing. It was a fantastic afternoon with good food and company. Poor Paul couldn't have the food that was cooked hes not allowed frozen prawns. He was happy with his coffee and the company. It was so nice to be able to go out and see friends, before the transplant Paul was very fatigued and it wasn't fair to drag him out. It feels fantastic to see Paul happy , alert and his usual bubbly self.
We got home and I could see Paul was getting a little tired, Sometimes I think he forgets what hes had done. managed to get him to take a nap whilst i make his chicken curry for him.
We went to see my close friend Vi, shes such a strong, caring and genuine person. She has been very poorly with cancer. But has always kept in regular contact to see how Paul has been doing. It was a fantastic afternoon with good food and company. Poor Paul couldn't have the food that was cooked hes not allowed frozen prawns. He was happy with his coffee and the company. It was so nice to be able to go out and see friends, before the transplant Paul was very fatigued and it wasn't fair to drag him out. It feels fantastic to see Paul happy , alert and his usual bubbly self.
We got home and I could see Paul was getting a little tired, Sometimes I think he forgets what hes had done. managed to get him to take a nap whilst i make his chicken curry for him.
Tracolimus goes up and high pottasium
Wednesday 16th November 2011
We got a call from the Transplant team this morning, they said to put the Tracolimus up to 5mg it was 4 last week and that Paul's potassium levels were high, I was quiet shocked as potassium is found in bananas, citrus fruit and juices. Claire also mentioned them, I told her that he hasn't had any of them. All he has for breakfast is cheese toasties and chicken curry for his tea, he's not had any fruit since his transplant. She told me not to worry but to make sure that Paul drinks at least 2 litres of fluid a day water,tea and coffee would be adequate.
Paul is having a good day and is getting use to the changes to his medication. We managed a lovely walk with Hayden in the afternoon. We went into Boots ,our friend Paula works there, she was struck with emotion when she saw Paul, she was so happy that he finally had his transplant and that he was on the road to recovery. It was lovely to see everyone at Boots, they all were really happy for us both. I managed to show my grandson Hayden of too, what a lovely afternoon I had with my two favourite boys. We also went to see Mr Jolly Rodger the lovely man that owns the chippy. He was so chuffed and couldn't believe that Paul was out and about. We met so many people this afternoon and every single one was so overwhelmed and happy for us. A big thank you to you all.
We got a call from the Transplant team this morning, they said to put the Tracolimus up to 5mg it was 4 last week and that Paul's potassium levels were high, I was quiet shocked as potassium is found in bananas, citrus fruit and juices. Claire also mentioned them, I told her that he hasn't had any of them. All he has for breakfast is cheese toasties and chicken curry for his tea, he's not had any fruit since his transplant. She told me not to worry but to make sure that Paul drinks at least 2 litres of fluid a day water,tea and coffee would be adequate.
Paul is having a good day and is getting use to the changes to his medication. We managed a lovely walk with Hayden in the afternoon. We went into Boots ,our friend Paula works there, she was struck with emotion when she saw Paul, she was so happy that he finally had his transplant and that he was on the road to recovery. It was lovely to see everyone at Boots, they all were really happy for us both. I managed to show my grandson Hayden of too, what a lovely afternoon I had with my two favourite boys. We also went to see Mr Jolly Rodger the lovely man that owns the chippy. He was so chuffed and couldn't believe that Paul was out and about. We met so many people this afternoon and every single one was so overwhelmed and happy for us. A big thank you to you all.
Second clinic visit at Leeds
Paul was weighed and we were first seen by the Dietitian, what a lovely lady, she jotted down what Paul was managing to eat, she said if he wants curry everyday so be it, hes still getting the necessary proteins. She advised Paul to increase the calories, that put a smile on my face, I love baking and have baked a few Lemon Drizzle cakes recently .Paul has had the odd half slice, which was a shock as before he would easily manage several slices. he reassures me my baking is still spot on. Before his Transplant he had a very sweet tooth but his taste buds have changed, we were told it could take some time before they come back. She also told Paul to continue with his fresubin drinks and his energy shots as they are very important in the healing process and count towards his calorie intake.
We were seen by Dr Attia today, he asked with Paul had any fevers or rigors (shaking or exaggerated shivering ). I mentioned that he had some tremors had the weekend but his temperature was fine. He said his last blood results had shown white blood cells, which could be signs of the new liver trying to reject. He told us to keep an eye on his temperature but apart from that he was happy with his progress.we were both taken back with this, but remained calm and took everything on board. Claire one of the Transplant nurses took the rest of Pauls stitches out, they were done in seconds. We handed our letter for the donors faily, Claire had a read and said it was perfectly wrote. I hope they are going to be okay with the letter, the last thing we want to do his add more pain.
We went to get Paul's blood taken and this week got it right, blood first then the Tacrolimus and coffee.
We were seen by Dr Attia today, he asked with Paul had any fevers or rigors (shaking or exaggerated shivering ). I mentioned that he had some tremors had the weekend but his temperature was fine. He said his last blood results had shown white blood cells, which could be signs of the new liver trying to reject. He told us to keep an eye on his temperature but apart from that he was happy with his progress.we were both taken back with this, but remained calm and took everything on board. Claire one of the Transplant nurses took the rest of Pauls stitches out, they were done in seconds. We handed our letter for the donors faily, Claire had a read and said it was perfectly wrote. I hope they are going to be okay with the letter, the last thing we want to do his add more pain.
We went to get Paul's blood taken and this week got it right, blood first then the Tacrolimus and coffee.
Writing to the Donor family which was very emotional
Saturday 12 and Sunday 13th November 2011
Paul is having a nice quiet day today so its a proper pyjama day for us. Hes slept quite alot today, which was much needed. He still has some shaking in his hands but mostly his right hand. we will mention this on Tuesday. I was trying to draft a letter to the Donor family,There were more tears than words, it's such a tough thing to do. We don't want to upset them and I cant imagine what it would be like receiving this letter that were writing them. They are and always will be in our thoughts and prayers. It has taken me several hours to draft the letter. will show Paul and we will amend it together, a very emotional day.
Paul had a good nights sleep and the shaking wasn't anywhere near last nights. I felt physically, mentally and emotionally drained today. It's still worrying and tiring after transplant but it's a different kind of emotion. I've got to keep on form, Coffee has become my new friend.
We both looked at the letter I drafted yesterday, Paul was taken back with emotion, He said it was a very heart felt letter and we added a few things on. I finally manged to finish the letter and put it away in my bag to hand over to the Transplant team. God bless all of your family.
Paul is having a nice quiet day today so its a proper pyjama day for us. Hes slept quite alot today, which was much needed. He still has some shaking in his hands but mostly his right hand. we will mention this on Tuesday. I was trying to draft a letter to the Donor family,There were more tears than words, it's such a tough thing to do. We don't want to upset them and I cant imagine what it would be like receiving this letter that were writing them. They are and always will be in our thoughts and prayers. It has taken me several hours to draft the letter. will show Paul and we will amend it together, a very emotional day.
Paul had a good nights sleep and the shaking wasn't anywhere near last nights. I felt physically, mentally and emotionally drained today. It's still worrying and tiring after transplant but it's a different kind of emotion. I've got to keep on form, Coffee has become my new friend.
We both looked at the letter I drafted yesterday, Paul was taken back with emotion, He said it was a very heart felt letter and we added a few things on. I finally manged to finish the letter and put it away in my bag to hand over to the Transplant team. God bless all of your family.
lovely afternoon and evening but horrid night
Friday 11th November 2011
Paul is still having chicken curry for his dinner every evening, I have tried to see if anything else might take his fancy, but no chance. I don't care as long as he is eating it doesn't matter. We invited our friend Cath round for lunch, she was in her element about having homemade chicken curry for lunch. We had such a relaxing afternoon, feels like the old days when we use to entertain our friends. Great to see Skip being alert and his usual funny self. we laughed so much.
Later that evening Di and Simon were calling round for dinner and guess what, Chicken curry on the menu. I had made curry in the morning and now again this evening. made a few other dishes too, but I don't mind, when Paul had PSC he had no appetite and I couldn't relax in the kitchen, where as now its a honour to cook and bake for him. I can't tell you the feeling I have when I see him eat and enjoy his food, we had a great evening full of banter and laughs. I did notice that Paul was getting tired which is understandable, So when everyone left, I gave him his medication and we went to bed.
At about 3.30am, I noticed that Paul was shaking vigorously, I was shocked and felt very scared. I took a deep breath and tried to wake him up, it took several minutes it was heartbreaking, Paul soon came round and the shaking gradually stopped. this then continued about 6.30 am, I was alot calmer has its one of the side affects of the anti rejection tablets.
I rang the Transplant team and explained what happened, they said it was the side affect.s of the Tac I told them I take his temperature everyday and I had noticed it had gone up slightly.
I gave him so painkillers and made him feel assured that everything would be okay.
Paul is still having chicken curry for his dinner every evening, I have tried to see if anything else might take his fancy, but no chance. I don't care as long as he is eating it doesn't matter. We invited our friend Cath round for lunch, she was in her element about having homemade chicken curry for lunch. We had such a relaxing afternoon, feels like the old days when we use to entertain our friends. Great to see Skip being alert and his usual funny self. we laughed so much.
Later that evening Di and Simon were calling round for dinner and guess what, Chicken curry on the menu. I had made curry in the morning and now again this evening. made a few other dishes too, but I don't mind, when Paul had PSC he had no appetite and I couldn't relax in the kitchen, where as now its a honour to cook and bake for him. I can't tell you the feeling I have when I see him eat and enjoy his food, we had a great evening full of banter and laughs. I did notice that Paul was getting tired which is understandable, So when everyone left, I gave him his medication and we went to bed.
At about 3.30am, I noticed that Paul was shaking vigorously, I was shocked and felt very scared. I took a deep breath and tried to wake him up, it took several minutes it was heartbreaking, Paul soon came round and the shaking gradually stopped. this then continued about 6.30 am, I was alot calmer has its one of the side affects of the anti rejection tablets.
I rang the Transplant team and explained what happened, they said it was the side affect.s of the Tac I told them I take his temperature everyday and I had noticed it had gone up slightly.
I gave him so painkillers and made him feel assured that everything would be okay.
Weekly out patients out patient (every Tuesday)
Tuesday 8th November 2011
We have to attend Leeds every Tuesday for the next three months, this was our first appointment. We decided to take the train, Paul met alot of his colleagues and friends at the station. They were all taken back at how well he was looking. One of his bosses was overwhelmed , bless her, it was so lovely to see that my Skip is missed and thought of so much.
We arrived at Leeds and were greeted by our favourite Secretary Karen, she's a star and is fantastic at her job, always makes us feel at ease. We then met Claire one of the Transplant nurses, shes lovely too, feel so at ease with her, they all are incredible. We then met one of the Surgeons and he was happy with Paul's progress and told him to reduce his predisonole(steriod) to 15mg he was originally on 20mg. He had a look at Paul's abdomen and said that it was healing well and that one of the nurses would remove the remaining staples. Claire took out the staples and asked Paul if he wanted to keep any, Paul said he didn't but he knows somebody that will, I'm sad I know, but I have kept all his name bands. She also told us a little about our Donor, it was very emotional, god bless him and all his family. We're going to write a letter to the family., that is going to be so hard, emotional and heartbreaking.
We said our goodbyes to the team, they have become like family, Paul can't take his Tacrolimus (Prograf) on the day of clinic till he has seen the Dr and has had his bloods taken. We were on our way to the bloods department the queue was horrendous so we thought we would take a ticket and grab a coffee. We sat down and were enjoying our coffee. Paul hadn't taken any of his medicines this morning so he asked if I would give him his medicines. I gave him his medicines total of 31, as he took the Tacrolimus I remember putting my hand over my mouth. Paul looked stunned he said whats wrong ,I couldn't speak at first, then I replied " I don't believe it I have just given you your Tac and you haven't had your blood test. I haven't seen him move so fast, he said " don't worry I will go and get my bloods done now". He went upstairs to see one of the Phlebotomist and explained what had happened, He was fine about it and took Paul's blood and said to go and let the Transplant nurses know what had happened.
Paul went to see Claire, she said it was okay and that he did the right thing, she couldn't stop laughing. I was relieved. I'm going to make sure, that next week he takes all his other tablets at home and take the Tacrolimus after blood test.
We went to say hello and drop some presents of to the staff on ward 83, ICU and Dr Davies. It was lovely to see everyone and they were very pleased to see that Paul is making good progress. It sounds bizarre but we enjoyed our day, it feels like we have extended family.Even made friends with Adele who works in the newsagents in the hospital, shes got a lovely personality.
As we got home our Grandson was here perfect end to a happy day. Paul is doing really well.
We have to attend Leeds every Tuesday for the next three months, this was our first appointment. We decided to take the train, Paul met alot of his colleagues and friends at the station. They were all taken back at how well he was looking. One of his bosses was overwhelmed , bless her, it was so lovely to see that my Skip is missed and thought of so much.
We arrived at Leeds and were greeted by our favourite Secretary Karen, she's a star and is fantastic at her job, always makes us feel at ease. We then met Claire one of the Transplant nurses, shes lovely too, feel so at ease with her, they all are incredible. We then met one of the Surgeons and he was happy with Paul's progress and told him to reduce his predisonole(steriod) to 15mg he was originally on 20mg. He had a look at Paul's abdomen and said that it was healing well and that one of the nurses would remove the remaining staples. Claire took out the staples and asked Paul if he wanted to keep any, Paul said he didn't but he knows somebody that will, I'm sad I know, but I have kept all his name bands. She also told us a little about our Donor, it was very emotional, god bless him and all his family. We're going to write a letter to the family., that is going to be so hard, emotional and heartbreaking.
We said our goodbyes to the team, they have become like family, Paul can't take his Tacrolimus (Prograf) on the day of clinic till he has seen the Dr and has had his bloods taken. We were on our way to the bloods department the queue was horrendous so we thought we would take a ticket and grab a coffee. We sat down and were enjoying our coffee. Paul hadn't taken any of his medicines this morning so he asked if I would give him his medicines. I gave him his medicines total of 31, as he took the Tacrolimus I remember putting my hand over my mouth. Paul looked stunned he said whats wrong ,I couldn't speak at first, then I replied " I don't believe it I have just given you your Tac and you haven't had your blood test. I haven't seen him move so fast, he said " don't worry I will go and get my bloods done now". He went upstairs to see one of the Phlebotomist and explained what had happened, He was fine about it and took Paul's blood and said to go and let the Transplant nurses know what had happened.
Paul went to see Claire, she said it was okay and that he did the right thing, she couldn't stop laughing. I was relieved. I'm going to make sure, that next week he takes all his other tablets at home and take the Tacrolimus after blood test.
We went to say hello and drop some presents of to the staff on ward 83, ICU and Dr Davies. It was lovely to see everyone and they were very pleased to see that Paul is making good progress. It sounds bizarre but we enjoyed our day, it feels like we have extended family.Even made friends with Adele who works in the newsagents in the hospital, shes got a lovely personality.
As we got home our Grandson was here perfect end to a happy day. Paul is doing really well.
Removal of the staples
Monday 7th November 2011
We went to our local clinic to have Paul's Staples removed. The nurse called us in and was taken back at how well Paul was doing, 15 days post transplant. While she was getting all the necessary equipment ready, she asked Paul if he was a drinker and is that why he had the transplant. Well you can imagine my respond. I told her that Paul actually had a dreadful disease called PSC (I explained what it was) and THAT IT IS NOT ALCOHOL RELATED. I also mentioned people might need a liver Transplant for other reasons too. She was apologetic.
Just want to state that I'm still promoting organ and blood donation and always will do.
The nurse took a couple of Paul's Staples out has we back in Leeds tomorrow and she felt it would better if they took the rest of them out.
After having some of his staples out, Paul said his stomach felt very heavy again. He felt a little apprehensive which is understandable.
We went to our local clinic to have Paul's Staples removed. The nurse called us in and was taken back at how well Paul was doing, 15 days post transplant. While she was getting all the necessary equipment ready, she asked Paul if he was a drinker and is that why he had the transplant. Well you can imagine my respond. I told her that Paul actually had a dreadful disease called PSC (I explained what it was) and THAT IT IS NOT ALCOHOL RELATED. I also mentioned people might need a liver Transplant for other reasons too. She was apologetic.
Just want to state that I'm still promoting organ and blood donation and always will do.
The nurse took a couple of Paul's Staples out has we back in Leeds tomorrow and she felt it would better if they took the rest of them out.
After having some of his staples out, Paul said his stomach felt very heavy again. He felt a little apprehensive which is understandable.
Sunday 6 November 2011
Sunday 6th November 2011
We have had a lovely Sunday just chilling in our pyjamas and enjoying each others company, just like the good old days. I made the kids a roast dinner but Paul wanted a homemade chicken curry, the kids find it bizarre with his new love of curry. as long as hes enjoying it nothing else matters.
Bedtime for us soon , hes having his staples removed at the clinic first thing. There's just under a hundred hope hes going to be alright. Hes brave but like he says with the things hes had done it's just another hurdle to get over.
Bedtime for us soon , hes having his staples removed at the clinic first thing. There's just under a hundred hope hes going to be alright. Hes brave but like he says with the things hes had done it's just another hurdle to get over.
Friday 4th November and Saturday 5th november 2011
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
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
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.
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