Paul is doing really well, to look at him now you wouldn't even think hes had a liver Transplant.We lit a candle for our unknown Donor and his family. If it wasn't for him, I wouldn't be sat here celebrating Christmas with my husband. They all will be in my thoughts for the rest of my life. I haven't blogged for a while as I haven't been to good, Its the last 18mths catching up with me. Just a little advice to any carers out there, please take some time out for yourselves (easy said than done). I have burnt the candle out at both ends, (but I would do it again). Just going to take things nice and easy will be back to my normal self in no time.
The last time we were at the liver clinic was on the 13th December, we met our dear friend Ben and his lovely mum Sue, he was attending his first Pre Transplant appointment. We all met up for several coffees and doughnuts, well Ben was drinking Coke!! We chatted for ages it was lovely to see them both.I'm so happy that Ben and Paul met, its like when Paul met Bill he was a positive mind set for him. What better person to meet that has already been through the whole process. I really hope Ben gets the crucial call soon ,so he has the better quality of life that Paul is experiencing now.
I would like to wish everyone that has followed our blog a merry Christmas and a healthy, happy and wonderful New Year. Naz x
Monday 26 December 2011
Sunday 11 December 2011
Should I stay or should I go ?
So slowly but surely Ulcerative Colitis started to have an affect on my everyday life at home and work. The first time it really troubled me was while I was at work in 2001 while I was working as customer service Assistant at Victoria station in manchester. I used to work on platforms 4 and 5 right in the centre of the station, the problem with this was that our staff room was on platform 3 which meant if I needed to use the toilet I had to go upstairs, across a bridge, then downstairs and along platform 3; then punch a secure code to access the staffroom altogether about a 3-4 minute walk. On numerous occasions I would get this horrible feeling, that I needed the toilet and that I wouldn't make it over to p3 in time. A really horrible scary feeling. Then sometimes I would race over to the toilet evading people who would try to ask questions about there trains, quickly punch the security code in run into the toilet pull down my pants sit down AND THEN........................................NOTHING.
Why, why was I feeling like this,it's really like your body playing tricks on you its awful. I would then make my way back to p4-5 and wait worrying when my next cramps would start; as this could happen 3 or 4 times a day.
Maybe a year or so after my diagnosis the fatigue started to kick in, feeling really tired and sometimes struggling to get up for work.
Sometimes my stomach felt as though it was jumping around it was a weird and unatural feeling. After I told my GP he prescribed a drug called Mebeverine. Which if my memory has improved since the transplant is an anti spasmodic treatment. I took this for a number of months and it did seem to work as far as the stomach spasms went.
I was still having colonoscopys every 6 months to see how the UC was, thankfully the drugs were keeping it under control, this was always a big relief to me as my big fear was that I may have to have my bowel removed.
Little did I know that UC is quite a big factor in people who go on to develop PSC. I remeber time and time again one word would spin in my head after bouts of feeling poorly............. WHY?.
Paul Spencer 11.12.11
Why, why was I feeling like this,it's really like your body playing tricks on you its awful. I would then make my way back to p4-5 and wait worrying when my next cramps would start; as this could happen 3 or 4 times a day.
Maybe a year or so after my diagnosis the fatigue started to kick in, feeling really tired and sometimes struggling to get up for work.
Sometimes my stomach felt as though it was jumping around it was a weird and unatural feeling. After I told my GP he prescribed a drug called Mebeverine. Which if my memory has improved since the transplant is an anti spasmodic treatment. I took this for a number of months and it did seem to work as far as the stomach spasms went.
I was still having colonoscopys every 6 months to see how the UC was, thankfully the drugs were keeping it under control, this was always a big relief to me as my big fear was that I may have to have my bowel removed.
Little did I know that UC is quite a big factor in people who go on to develop PSC. I remeber time and time again one word would spin in my head after bouts of feeling poorly............. WHY?.
Paul Spencer 11.12.11
Saturday 10 December 2011
Friday 9th December 2011
Paul is feeling under the weather today, got a temperature and looks like hes full of the flu. This is dreadful as Paul's got a very low immune system and it can make him very poorly. If I had it my body could fight against it more easily.
We went to see Dr Kumar who is always happy to see Paul, he told him as a precautionary he would prescribe him with Amoxicillan,an extra helping hand for his body to fight any infection.He also said if he gets Rigors( A rigor is an episode of shaking or exaggerated shivering which can occur with a high fever.)To go straight to the hospital.As it could be a sign of Bacterial Infection.
When we got home he looked really tired, I gave him his dinner (chicken Curry) and then he had all his mediction and went off to bed. He had quiet a rough night, as he had a temperature and he was shaking and was cold. He took paracetomal, it helped to some degree.His Temperature has gone down but he still isn't himself. Hes going to stay in bed today and rest and get lots of pampering ( he always gets that anyway) well maybe a little more than usual.
When you have low immune system, its very hard for your body to helf fight of any infection, thats why its important that you go to your Doctors if your feeling under the weather, so the problem can be dealt with quickly.
I have also noticed quiet alot of people looking at our blog, which is fantastic,If you want to leave any comments or ask any questions, please don't hesitate to do so.
We went to see Dr Kumar who is always happy to see Paul, he told him as a precautionary he would prescribe him with Amoxicillan,an extra helping hand for his body to fight any infection.He also said if he gets Rigors( A rigor is an episode of shaking or exaggerated shivering which can occur with a high fever.)To go straight to the hospital.As it could be a sign of Bacterial Infection.
When we got home he looked really tired, I gave him his dinner (chicken Curry) and then he had all his mediction and went off to bed. He had quiet a rough night, as he had a temperature and he was shaking and was cold. He took paracetomal, it helped to some degree.His Temperature has gone down but he still isn't himself. Hes going to stay in bed today and rest and get lots of pampering ( he always gets that anyway) well maybe a little more than usual.
When you have low immune system, its very hard for your body to helf fight of any infection, thats why its important that you go to your Doctors if your feeling under the weather, so the problem can be dealt with quickly.
I have also noticed quiet alot of people looking at our blog, which is fantastic,If you want to leave any comments or ask any questions, please don't hesitate to do so.
A very busy day
We got to Leeds quiet early as we had to get back to Manchester for 2'oclock. Talk about trains planes and automobiles.Our lovely friend Jen from Scarborough was waiting to greet us outside clinic. Poor thing has just had an operation quiet recently. Bill her husband has been called in to have some test and biopsy, his blood test have shown some abnormalties, hope he's okay such a wonderful couple who have been through two transplants and now more test.
It was very busy in clinic as alot of the team were down in Theatre as a Transplant was taking place. That brought back some memories. The Dr was pleased with Pauls last blood test and said they would probably decrease the Predisolone next week. Paul explained to the Dr that he has experienced numbness and shaking in both his hands and fingers. The Dr said it was one of the side affects of Prograf Tracolimus. It's an awful experience watching your loved one have these side affects, but like Paul says it's a small price to pay for a better quality of life.
We went to get Pauls bloods done, this happens every clinic visit, but the queue was horrendous, so we went to see lovely Bill in the Liver unit. It was lovely to see him, still his same jolly self. He was waiting to go down for his Biopsy, hope everything comes back good for Bill, hes been through enough, I notice that he had the dreadful itch all over his arms, I hope its not the PSC coming back. We said our goodbyes and told Jen to keep us informed.
Mad rush back to Manchester, we met a lovely guard called Preston, we got talking as Paul also does the same job.Paul said he was on sick because he had a liver Transplant. Preston was very intrigued by our Psc story then follwed by our Transplant story. What a nice bloke, I gave him our blog address so he could have a look.
Once we got to our local hospital in Manchester, we had quiet a walk to the Max team ( they deal with all dental work).We met the porter who had ferried Paul around when he had septicemia, he was so happy that paul had finally got his Transplant. He was fantastic to Paul ,when he was seriously ill back in June.
We finally arived at the max clinic and were seen by Dr Sweet, he was superb and caring. He said Paul looked fantastic for someone who was 6 weeks post transplant. He took down all of Pauls medication and said he was happy to extract his tooth. On the day of his appointent Paul will have to double up on his steriod tablets. This is to help the blood to clot.
Its been a very long day but it doesn't stop there for me, its time to start cooking pauls fav dish AGAIN chicken curry. Ever since he came home thats all he wants to eat, I don't mind at least its home made and its nutrious.
It was very busy in clinic as alot of the team were down in Theatre as a Transplant was taking place. That brought back some memories. The Dr was pleased with Pauls last blood test and said they would probably decrease the Predisolone next week. Paul explained to the Dr that he has experienced numbness and shaking in both his hands and fingers. The Dr said it was one of the side affects of Prograf Tracolimus. It's an awful experience watching your loved one have these side affects, but like Paul says it's a small price to pay for a better quality of life.
We went to get Pauls bloods done, this happens every clinic visit, but the queue was horrendous, so we went to see lovely Bill in the Liver unit. It was lovely to see him, still his same jolly self. He was waiting to go down for his Biopsy, hope everything comes back good for Bill, hes been through enough, I notice that he had the dreadful itch all over his arms, I hope its not the PSC coming back. We said our goodbyes and told Jen to keep us informed.
Mad rush back to Manchester, we met a lovely guard called Preston, we got talking as Paul also does the same job.Paul said he was on sick because he had a liver Transplant. Preston was very intrigued by our Psc story then follwed by our Transplant story. What a nice bloke, I gave him our blog address so he could have a look.
Once we got to our local hospital in Manchester, we had quiet a walk to the Max team ( they deal with all dental work).We met the porter who had ferried Paul around when he had septicemia, he was so happy that paul had finally got his Transplant. He was fantastic to Paul ,when he was seriously ill back in June.
We finally arived at the max clinic and were seen by Dr Sweet, he was superb and caring. He said Paul looked fantastic for someone who was 6 weeks post transplant. He took down all of Pauls medication and said he was happy to extract his tooth. On the day of his appointent Paul will have to double up on his steriod tablets. This is to help the blood to clot.
Its been a very long day but it doesn't stop there for me, its time to start cooking pauls fav dish AGAIN chicken curry. Ever since he came home thats all he wants to eat, I don't mind at least its home made and its nutrious.
Monday 5 December 2011
Dentist the dreaded filling!!!!!!!!!!
Paul had some fillings done today, which he was dreading but it wasn't as bad as he thought it would be. He's got to have an extraction but this will be done at the local hospital; as Paul has to be very careful about infections and they will sedate him. I wish we got all of Paul's dental work done while he was waiting for his transplant.
My advise to anyone waiting for transplantation is; to make sure you get any dental treatment done as soon as you can. It also eliminates any infections that could arise if you need fillings or extractions, believe me it's a stress you don't need.
Paul is doing really well, I feel like I have got my old hubby back which is great. We're back for Paul's weekly clinic appointment at Leeds tomorrow morning. Then back to Manchester for an appointent with the surgical team for his extraction.
Sunday 4 December 2011
Saturday 3 December 2011
Get in touch!!
I have been looking at the stats of how many people are viewing or reading our story and am really suprised at the numbers and the range of nationalitys all around the world.
It made me think about why people would want to read about us, but i also remember when i was told i may need a transplant that i spent hours on the internet trying find storys that had successful outcomes to give comfort through stressful and worrying times. I also know that relatives of loved ones who are inpoor health maybe looking for answers on these sites.
Having looked i was suprised to see followers from all over the UK,Usa,Russia,Canada,Slovenia,Germany and Hong kong so my message to you all is stay positive and try not to dwell on the negatives to much and speak about your feelings. If you feel alone get in touch, leave a comment we would be more than happy to respond and help in anyway we can. I do belive in alot of ways it was harder for Naz than it was for me as it must be awful to watch a loved one suffer and not be able to do much to help there pain.
The strange thing is we may all be different in our ways and cultures but the same things affect us when it comes to our health.
To all of you out there in the world i wish you strength and courage to get through and hope you have found a little comfort in our experience.
It made me think about why people would want to read about us, but i also remember when i was told i may need a transplant that i spent hours on the internet trying find storys that had successful outcomes to give comfort through stressful and worrying times. I also know that relatives of loved ones who are inpoor health maybe looking for answers on these sites.
Having looked i was suprised to see followers from all over the UK,Usa,Russia,Canada,Slovenia,Germany and Hong kong so my message to you all is stay positive and try not to dwell on the negatives to much and speak about your feelings. If you feel alone get in touch, leave a comment we would be more than happy to respond and help in anyway we can. I do belive in alot of ways it was harder for Naz than it was for me as it must be awful to watch a loved one suffer and not be able to do much to help there pain.
The strange thing is we may all be different in our ways and cultures but the same things affect us when it comes to our health.
To all of you out there in the world i wish you strength and courage to get through and hope you have found a little comfort in our experience.
Thursday 1 December 2011
Colonoscopy THE RESULTS !!!
A week or so after my first colonoscopy me and Naz received a letter to see Dr Klass regarding the results.
The meeting with him seemed to pass very quickly and everything he said to us seemed to be very hard to take in and we left feeling we didn't really understand what everything meant.
Dr Klass basically said that small parts of my bowel and colon were showing inflamtion and this would be the reason why when I used the toilet there were drops of blood as sometimes the inflamation could lead to bleeding in the bowel. I think alot of what he was telling us seemed to be lost in translation but he did tell us that from the biopsy results it was his opinion I had Ulcerative Colitis. He went on to say that there wasn't really a cure but that it could be controlled with drugs that would include steroids and anti-inflammatory. Like I say alot of what was said was very hard to take in as I had not until this point in my life (36 yrs old) suffered from any poor health even catching colds or coughs and the usual run of the mill ailments.
The thing that stunned us both were the words long term he may have to have is bowel removed !!
So it was with these words whizzing round in our heads we left the hospital for the 15 minute walk home, its strange that although it was 10yrs ago I remember the weather was a lovely sunny but cool afternoon.
We didn't speak much as I think we were both in a little bit of shock and I know that I felt this can't be right as I was feeling in quite good health at the time.
Before we went home we called into the pharmacy with the prescription that Dr Klass gave us for Messalazine(asacol) and Prednisolone (steroid).
Still find it very strange that I had gone through 35yrs of my life with any ailments of note and now I was told of something that would affect the rest of my life.
Also that there was no cure and that they didn't really have any idea what causes Ulcerative Colitis.
All I knew was that from this day forward I was going to be taking medication long term.
The meeting with him seemed to pass very quickly and everything he said to us seemed to be very hard to take in and we left feeling we didn't really understand what everything meant.
Dr Klass basically said that small parts of my bowel and colon were showing inflamtion and this would be the reason why when I used the toilet there were drops of blood as sometimes the inflamation could lead to bleeding in the bowel. I think alot of what he was telling us seemed to be lost in translation but he did tell us that from the biopsy results it was his opinion I had Ulcerative Colitis. He went on to say that there wasn't really a cure but that it could be controlled with drugs that would include steroids and anti-inflammatory. Like I say alot of what was said was very hard to take in as I had not until this point in my life (36 yrs old) suffered from any poor health even catching colds or coughs and the usual run of the mill ailments.
The thing that stunned us both were the words long term he may have to have is bowel removed !!
So it was with these words whizzing round in our heads we left the hospital for the 15 minute walk home, its strange that although it was 10yrs ago I remember the weather was a lovely sunny but cool afternoon.
We didn't speak much as I think we were both in a little bit of shock and I know that I felt this can't be right as I was feeling in quite good health at the time.
Before we went home we called into the pharmacy with the prescription that Dr Klass gave us for Messalazine(asacol) and Prednisolone (steroid).
Still find it very strange that I had gone through 35yrs of my life with any ailments of note and now I was told of something that would affect the rest of my life.
Also that there was no cure and that they didn't really have any idea what causes Ulcerative Colitis.
All I knew was that from this day forward I was going to be taking medication long term.
Sunday 27 November 2011
And in the beginning
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
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
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.
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.
Wednesday 31 August 2011
Primary Sclerosing Cholangitis
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.
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.
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.
Saturday 30 July 2011
Friday 29 July 2011
Just a thank you to our family and friends
Since starting the blog, my intentions were to write everyday, but its easy said than done, I just wanted to thank people that we have met along our journey. Paul met a lovely gentleman called Bill from Scarborough, what an inspiration he has been to us, especially to Paul, He's been through the horrid disease, had setbacks when hes had the call and finally has had his transplant. He rings Paul every other day and it's lovely because he can actually understand what Paul's going through. Our kids have been fantastic and I don't think I could of coped without them, when we got the call a couple of days ago. Mebs my brother has been a rock, emotionally and financially, can't thank him enough.My cousin Taz has always been there for us, Paul's boss Gary and Michele are lovely people they have been very supportive, My boss Gudrun has been supportive along with all my friends at work too. Cath our Dr's secretary has been a great support, salt of the earth. All our friends and family that I haven't mentioned,a big thank you to all of you as well, Just going to mention Mick and Maz, poor Mick is in Leeds going through a liver transplant assessment, stay strong both of you.
Wednesday 27 July 2011
An Emotional Night
27th July 2011
A day I will never forget, it started off positive, my baby neice was born today, it was nice to celebrate such happy news. Paul and I had our tea around five, we then had Mikey our son and his girlfriend Aimee visit us and we were all in high spirits. We offered them a lift home, as we were leaving Paul asked if I had my fone, which I did, as we got to Mikey's house my fone was ringing , I didn't realise the number and when I answered ,I knew straight away, the nurse asked for Paul, It was a strange, emotional and heartfelt feeling, we both burst into tears, the nurse was lovely and told us it was tentative that the transplant would go ahead, but to make our way to the Leeds. We got home and contacted our nearest and dearest, It was very emotional, we have been waiting for the call, but nothing can prepare you, mixed feelings spin around. I actually said a pray for the donor family, my heart goes out to them. Cameron, Mikey and Chantelle came to the hospital with us, this was a very personal and emotional journey, We arrived at the hospital and waited in the television room. A short while later a doctor came to see us, He apologised to us and said that the transplant wouldn't go ahead as the donor 's liver wasn't suitable. I felt relieved and saddened at the same time, The past couple of hours were a roller coaster,we were told that this can happen when we had the liver assessment. It's another journey we have had with this horrible disease. we're going to stay optimistic. My heart goes out to the donors family, people like them make a huge difference to people like Paul.
A day I will never forget, it started off positive, my baby neice was born today, it was nice to celebrate such happy news. Paul and I had our tea around five, we then had Mikey our son and his girlfriend Aimee visit us and we were all in high spirits. We offered them a lift home, as we were leaving Paul asked if I had my fone, which I did, as we got to Mikey's house my fone was ringing , I didn't realise the number and when I answered ,I knew straight away, the nurse asked for Paul, It was a strange, emotional and heartfelt feeling, we both burst into tears, the nurse was lovely and told us it was tentative that the transplant would go ahead, but to make our way to the Leeds. We got home and contacted our nearest and dearest, It was very emotional, we have been waiting for the call, but nothing can prepare you, mixed feelings spin around. I actually said a pray for the donor family, my heart goes out to them. Cameron, Mikey and Chantelle came to the hospital with us, this was a very personal and emotional journey, We arrived at the hospital and waited in the television room. A short while later a doctor came to see us, He apologised to us and said that the transplant wouldn't go ahead as the donor 's liver wasn't suitable. I felt relieved and saddened at the same time, The past couple of hours were a roller coaster,we were told that this can happen when we had the liver assessment. It's another journey we have had with this horrible disease. we're going to stay optimistic. My heart goes out to the donors family, people like them make a huge difference to people like Paul.
Friday 17 June 2011
Back on Transplant list
14th, 15th and 16th June 2011
Paul is recovering slowly but surely. he s going to continue to take antibiotics till we receive a new liver. Hes got to take frebusin protein drinks 3 times a day too. Paul was very downbeat today, Which is understandable, his emotions are all over the place, waiting for a transplant, is an emotional rollacoaster, going to bed and getting up, you always have the thought of is it today, that we'll will get that important call. your whole life is on standby.
It's a distressing time for everyone, especially for Paul, but were going to be optimistic, this is not going to beat us. PSC is an awful disease, it has a nasty habit of throwing things at you, without any notice.
We had a dietitian visit us today, shes told Paul he has to eat more calories and the importance of having snacks and to ensure he has a snack before bedtime, it was quiet odd for a dietitian to encourage you to have more calories, but with end stage of liver disease, the liver can't store fats, therefore you have to intake on food.
Its upwards and onwards, we will get through this together, and I know there will be days of ups and downs. but it won't beat us.
Paul is recovering slowly but surely. he s going to continue to take antibiotics till we receive a new liver. Hes got to take frebusin protein drinks 3 times a day too. Paul was very downbeat today, Which is understandable, his emotions are all over the place, waiting for a transplant, is an emotional rollacoaster, going to bed and getting up, you always have the thought of is it today, that we'll will get that important call. your whole life is on standby.
It's a distressing time for everyone, especially for Paul, but were going to be optimistic, this is not going to beat us. PSC is an awful disease, it has a nasty habit of throwing things at you, without any notice.
We had a dietitian visit us today, shes told Paul he has to eat more calories and the importance of having snacks and to ensure he has a snack before bedtime, it was quiet odd for a dietitian to encourage you to have more calories, but with end stage of liver disease, the liver can't store fats, therefore you have to intake on food.
Its upwards and onwards, we will get through this together, and I know there will be days of ups and downs. but it won't beat us.
Monday 13 June 2011
Positive News 13th June 2011
Paul rang me at 9.37am this morning, his consultant at our local hospital came to see him, very positive news, Paul is doing well, still on antibiotics and will be in hospital for a while. He's still jaundice and is still very swollen, but this is part of his PSC, its the livers way of letting you know it can't cope with its job. Waiting for a liver transplant is a very traumatic time and a lot of people end up with infections and become poorly just like Paul, its all part and parcel of the rocky journey.
Paul is being put back on the liver transplant list this afternoon,I can't explain the jubilation I feel. Fingers cross that we find a suitable match, like I have stated in my previous blogs Paul's blood group is o negative, its all upwards and onwards and everyday is going to be precious.
Can't wait for my visit this afternoon, I have been very fortunate to be able to have time off, whilst Paul has been ill, I can go back to work in a few days, knowing that hes recovering slowly but surely. I will have my mobile with me all the time, waiting for that crucial call, that can give Paul a better quality of life.
Paul is being put back on the liver transplant list this afternoon,I can't explain the jubilation I feel. Fingers cross that we find a suitable match, like I have stated in my previous blogs Paul's blood group is o negative, its all upwards and onwards and everyday is going to be precious.
Can't wait for my visit this afternoon, I have been very fortunate to be able to have time off, whilst Paul has been ill, I can go back to work in a few days, knowing that hes recovering slowly but surely. I will have my mobile with me all the time, waiting for that crucial call, that can give Paul a better quality of life.
Sunday 12 June 2011
12th June 2011
Went on my afternoon visit to see my lovely hubby, he looked very jaundice today and his chest was very wheezy, he also had a temperature. He started back on his oxygen. Feet and abdomen still swollen, he looked very poorly again, I just wish he gets rid of the infections and gets better soon, just want him on transplant list, hes really suffered the past couple of weeks, seeing your love ones go through turmoil is a very sad and distressing time, especially when you can't fix the problem; but just giving Paul emotional help and support makes it a little easier for me. I do believe in miracles, please mankind don't prove me wrong! Paul's son came to visit him today, hes going to see if he has the same blood group as him, which is 0 negative. It's all a waiting game, but first of all got to get Paul better. Writing this blog, helps me express what I feel and I hope it helps ,other people who are in the same situation. I still get up at night and check to see if I've missed the call, then reality sinks in when I see Paul isn't in bed.. Paul rung me whilst I was writing this blog, he said his feet have become more swollen, he's raised his feet to see if this will help. Doctor coming to see him in the morning, lets hope all goes well. As I was leaving the hospital,I bumped him to some people I know, they asked me who I was visiting, I told them it was Paul. I mentioned he had PSC, which affects the liver, one of them replied "does he drink excessive alcohol!", I felt raged, I told them its not alcohol related and that Paul doesn't drink anyway. I always find myself explaing this. Maybe it's just me, but people shouldn't jump to WRONG conclusions!!!
11TH June 2011
Paul's legs, feet, ankles and stomach are very swollen, Drs have said its fluid which is infected .He's struggling to walk because of this and also getting out of breath very easily and his chest is wheezy too. He still looks very jaundice and it's getting him really down, his whole domain wasn't right today. It's getting him really down, which is understandable, I whinge at the slightest bit of cold, hes going through the mill. He's very strong minded and I know he will get through this testing time, My Skip's a fighter!!!!! Hes having injections in his abdomen, this is to prevent blood clots.
He had a surprise visitor today, Andy who he use to work with years ago came to see him, its ironic as I'm friends with his sister and we work together, lovely family. Visiting times are very precious to me, you can visit in the afternoon 3-4 and evening 6.30 8.00pm. He's had lots of visitors, The whole day drags waiting to go and see Paul,but the visits just fly by.
Paul's had no appetite for weeK, I took him a bowl of potato Ash, he managed to eat it, I was really happy, as I he hasn't been eating. He seemed more upbeat at the evening visit. Lets see what tomorrow brings!!!!!
He had a surprise visitor today, Andy who he use to work with years ago came to see him, its ironic as I'm friends with his sister and we work together, lovely family. Visiting times are very precious to me, you can visit in the afternoon 3-4 and evening 6.30 8.00pm. He's had lots of visitors, The whole day drags waiting to go and see Paul,but the visits just fly by.
Paul's had no appetite for weeK, I took him a bowl of potato Ash, he managed to eat it, I was really happy, as I he hasn't been eating. He seemed more upbeat at the evening visit. Lets see what tomorrow brings!!!!!
Friday 10 June 2011
Things no better 9th June 2011
I stayed at the hospital with Paul last night, he was very poorly, his ankles and stomach are very swollen. They took lots of bloods and Paul went for an abdominal scan which showed that his colitis was active. They also took samples of the fluid on his stomach, they are going to see if any bacteria grows in the next 24hrs. Paul has been passing urine and the drs think his kidneys are affected, they going to put a catheter to help.He looks so tired,poorly and lifeless. Hes had no appetite for a week, Drs and nurses have been fantastic at the local hospital, Dr Mcfarlane, who is one of the gastro drs came to see Paul, he was very professional and said they will carry on with antibiotics, pain relief and albumin drips. He also said he had arranged for Paul to be put on the Gastro ward.
We said our goodbyes the medical unit staff, they were all fantastic, especially Liz, Kerry and Janice, they all treated him with the utmost care and clarity. Even Derek who ferried Paul around for his scans was fantastic.
We arrived at D6, the staff were very friendly quiet a few remembered us from the last time Paul was in, he continued with all medication for the day before, visiting time was coming to a close, I hate that part, but I was coming bk in 2hrs, it feels like a life time!!!!. As I left the hospital, the Drs came to see Paul. they said that they had grown the bacteria and it shows that Paul has septicemia, I felt as somebody had given me a huge slap. Why was this happening to my Skip ? ( that's Paul's nickname) They put him on more antibiotics.
Friday 10th June 2011
Paul is still very poorly, no appetite, feet, legs and abdomen very swollen, The drs are taking bloods to see if Albumin levels have improved, Paul is very tired today, coughing and wheezing too..
Please god get him better, whilst Paul is poorly, he has been suspended from the liver transplant list. what I have learnt the past few yrs, mths and weeks is my Skip, is an inspiration, not once has he complained, what ever life throws at him, he deals with it, hes not lost his happy go lucky attitude and not forgetting his great personality.
We said our goodbyes the medical unit staff, they were all fantastic, especially Liz, Kerry and Janice, they all treated him with the utmost care and clarity. Even Derek who ferried Paul around for his scans was fantastic.
We arrived at D6, the staff were very friendly quiet a few remembered us from the last time Paul was in, he continued with all medication for the day before, visiting time was coming to a close, I hate that part, but I was coming bk in 2hrs, it feels like a life time!!!!. As I left the hospital, the Drs came to see Paul. they said that they had grown the bacteria and it shows that Paul has septicemia, I felt as somebody had given me a huge slap. Why was this happening to my Skip ? ( that's Paul's nickname) They put him on more antibiotics.
Friday 10th June 2011
Paul is still very poorly, no appetite, feet, legs and abdomen very swollen, The drs are taking bloods to see if Albumin levels have improved, Paul is very tired today, coughing and wheezing too..
Please god get him better, whilst Paul is poorly, he has been suspended from the liver transplant list. what I have learnt the past few yrs, mths and weeks is my Skip, is an inspiration, not once has he complained, what ever life throws at him, he deals with it, hes not lost his happy go lucky attitude and not forgetting his great personality.
One of the worst days of my life 7th June 2011
I noticed Paul had a Temperature today, he looked really poorly, I gave him his usual medicines and he tried to get some sleep, but it was very uncomfortable for him, as not only had his feet and stomach swollen; he was complaining of chest, lower arm ache, he had the shivers and was finding it difficult to speak. I rung 999 straight away the ambulance was here in mins, they quickly assesed him, and were concerned with his observations. we got to the hospital and Paul was in alot of pain, the staff were fantastic and put a drip on him, they gave him morphine for his pain. a doctor came and assesed him,he said they would send him for a xray, after getting the results of both bloods and xray they said Paul has pneumonia.
He was put on a medical unit, they gave him antibiotics and pain relief through a drip. Paul's protein levels were very low too, they gave him albumin too.
I've never seen my husband so unwell, even when he had his variceal bleed, its been such a tough and painful time.
He was put on a medical unit, they gave him antibiotics and pain relief through a drip. Paul's protein levels were very low too, they gave him albumin too.
I've never seen my husband so unwell, even when he had his variceal bleed, its been such a tough and painful time.
3rd, 4th , 5th and 6th June 2011 Paul still is still unwell
The past three days have been tough, the swelling is still there, rang the hospital, they said to carry on with protein drinks, Paul hasn't been out for a week, he looks very jaundice and very tired, still not sleeping, He actually said ,he wished that we could get the call, its all awaiting game. If anything his feet and abdomen look very swelled. going to wait till tomorrow and try and get to this root problem.
2nd June 2011
Paul isn't feeling good at all, his ankles and abdomin are very swollen, hes very jaundice, no energy, hes had his feet up to reduce the swelling, fingers crossed things will improve, hes a rough day today can't sleep due to discomfort.
Sunday 5 June 2011
Waiting Liver Transplant
Waiting for that crucial call, which could be anytime. It's a sad time knowing that a family will be losing a loved one: To enable lots of people like Paul to have a second chance of a healthier and better way of life.
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