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.
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