I can't remember the exact date it was sometime in 2001 that I started to notice that when I went to the toilet.There were specks of blood around the toilet bowl, for the first few occasions I just left it. But as time went on the amount of blood started to increase till I decided to mention it to my wife and we made a appointment to see our Doc.
Our Doc did his checks on me (wont go in to detail but it involved bending over) and decided to send me to hospital for blood tests and to see a Gastroenterologist.
I have since found out in numerous conversations with people, that alot of people can see blood after going to the toilet and tend not to say or do anything about it. Mainly through not feeling comfortable to talk to someone or go to the doc because of feeling embarrased. (which is exactly how I felt)
But I can't stress enough how important it is to see someone straight away if these symptoms start to show.
After my blood tests I was sent an appt to have a colonoscopy under the care of my new consultant Dr Klass at North Manchester General Hospital.
With the letter came a box with 2 sachets of a lemon flavoured drink and the details of what a colonoscopy entailed and instructions for the lovely Lemon drink.
A Colonoscopy is a procedure were a long flexible tube with a camera and light on the end are pushed into your bum and all the way round into your colon.
Also on the end of the tube are a very small pair of sharp what I can only describe as clamps that will clamp on to the lining of your bowel and colon and pull off small samples of tissue for analysis.
The day before your procedure you are not allowed to eat or drink anything apart from the lovely Lemon drink.
One sachet of the drink is emptied into a jug and mixed with 2 litres of water to drink by the glass followed by the 2nd sachet.
After about 3 glasses your tummy starts to make all sorts of gurgling and other strange noises then for the next few hours the toilet will become your new best friend.(happy days)
All this is one to clear the bowel and all connecting bits so when the camera is in the doc can get a clear view of the lining of the Colon and surrounding areas.
On the day of the procedure you are asked to strip and put on a gown that fastens at the back.
I was also asked if I would like sedation or to go ahead without.
At this point I asked the opinion of the nurse who said "she believes the procedure can be uncomfortable, but not painful and said if I didn't have the sedation I could go home more or less straight away if everything went well.(The main problem with this procedure is a small tear to the lining that could cause bleeding however this is very rare) .So with the thought of being able to go home straight away decided to be brave and go without sedation. (BIG MISTAKE).
So I'm lay on a table on my side with my knees up to my chest and waiting for train to enter the tunnel.
Now I'm also able to see the monitor the doc is looking at, as the flexible tube is moved round bend after bend till it reached the Colon.
The really uncomfortable bits are when air is blown from the tube to keep the lens clear so the view is clear, you feel like your tummy is going to blow up and burst, the word uncomfortable was not how I would describe it.
Anyway samples were taken and it was all over in around 25 mins so not too long.
Little did I know that this was the beginning of mine and Naz's 10 year journey to Liver transplant.
Paul Spencer 27.11..11
Sunday, 27 November 2011
Thursday, 24 November 2011
Its me Skippy!! Finally.
Firstly I would like to thank everybody who has shown me love and support throughout the last 7 years since I was diagnosed with Psc. I include in that Family and friends, everybody at Northern rail my employers and all of you for taking the time to read this and share a small part of my journey to Liver
Transplant.
But thankyou can never express what I owe to the most fantastic wife I could have wished for.
Naz you have got me here, you have picked me up when I was at my lowest, you had faith enough for us both, and the strenghth to be here not only for me but to continue to love and support the rest of our family single handed.
I LOVE YOU X
Over the next few weeks I am going to try to put into words my journey from being diagnosed with Psc to the eventual Liver Transplant, my feelings and emotions so that maybe they can be of help or comfort to anyone who may be suffering the same.
As I write this I remind myself that I am by far from being able to relax within myself as I am barely 5 weeks post transplant and still have a way to go for my first milestone of 1 year. But so far so good.
Paul Spencer. 25.11.11.
Transplant.
But thankyou can never express what I owe to the most fantastic wife I could have wished for.
Naz you have got me here, you have picked me up when I was at my lowest, you had faith enough for us both, and the strenghth to be here not only for me but to continue to love and support the rest of our family single handed.
I LOVE YOU X
Over the next few weeks I am going to try to put into words my journey from being diagnosed with Psc to the eventual Liver Transplant, my feelings and emotions so that maybe they can be of help or comfort to anyone who may be suffering the same.
As I write this I remind myself that I am by far from being able to relax within myself as I am barely 5 weeks post transplant and still have a way to go for my first milestone of 1 year. But so far so good.
Paul Spencer. 25.11.11.
Tuesday, 22 November 2011
Registering Paul with a Dentist
Monday 21st November 2011
Managed to get Paul registered with a Dentist today. What a friendly bunch they couldn't believe that it was only 4weeks since his transplant.Saffia the Dentist was very professional and put Paul's mind at rest and Kelsey was fantastic too Paul was advised to get any dental work done by the Transplant team before he was discharged. This is because if you need any dental work and its not treated you may get an infection and with Paul's low immune system it's not advisable. They also said whilst hes on anti biotics for the next three months, to get any dental work done. Hes having a couple of fillings next week. he's quiet scared, he says it sounds silly because hes had a transplant and that the dentist should be a walk in the park. But I know a lot of people that are scared of going to the dentist, I'm one of them.
Managed to get Paul registered with a Dentist today. What a friendly bunch they couldn't believe that it was only 4weeks since his transplant.Saffia the Dentist was very professional and put Paul's mind at rest and Kelsey was fantastic too Paul was advised to get any dental work done by the Transplant team before he was discharged. This is because if you need any dental work and its not treated you may get an infection and with Paul's low immune system it's not advisable. They also said whilst hes on anti biotics for the next three months, to get any dental work done. Hes having a couple of fillings next week. he's quiet scared, he says it sounds silly because hes had a transplant and that the dentist should be a walk in the park. But I know a lot of people that are scared of going to the dentist, I'm one of them.
Tremors
Sunday 18th November 2011
Paul had a horrid night the shaking was awful, it actually woke me up. Paul was semi conscious, I remained calm and talked to him, he slowly started waking up. The shakes lasted a lot longer than the ones hes had before. When we was fully awake the shaking continued for a while. but it still remained on his right side. I sat him up and gave him a sip of water.
It settled with time and he went on having a up and down day, his appetite wasn't good. We have learnt to take each day as it comes each day is special to us. Where going to have bad and good days but going to carry on with optimism and positiveness.
Paul had a horrid night the shaking was awful, it actually woke me up. Paul was semi conscious, I remained calm and talked to him, he slowly started waking up. The shakes lasted a lot longer than the ones hes had before. When we was fully awake the shaking continued for a while. but it still remained on his right side. I sat him up and gave him a sip of water.
It settled with time and he went on having a up and down day, his appetite wasn't good. We have learnt to take each day as it comes each day is special to us. Where going to have bad and good days but going to carry on with optimism and positiveness.
A lovely afternoon At Vi's house
Thursday 17th November 2011
We went to see my close friend Vi, shes such a strong, caring and genuine person. She has been very poorly with cancer. But has always kept in regular contact to see how Paul has been doing. It was a fantastic afternoon with good food and company. Poor Paul couldn't have the food that was cooked hes not allowed frozen prawns. He was happy with his coffee and the company. It was so nice to be able to go out and see friends, before the transplant Paul was very fatigued and it wasn't fair to drag him out. It feels fantastic to see Paul happy , alert and his usual bubbly self.
We got home and I could see Paul was getting a little tired, Sometimes I think he forgets what hes had done. managed to get him to take a nap whilst i make his chicken curry for him.
We went to see my close friend Vi, shes such a strong, caring and genuine person. She has been very poorly with cancer. But has always kept in regular contact to see how Paul has been doing. It was a fantastic afternoon with good food and company. Poor Paul couldn't have the food that was cooked hes not allowed frozen prawns. He was happy with his coffee and the company. It was so nice to be able to go out and see friends, before the transplant Paul was very fatigued and it wasn't fair to drag him out. It feels fantastic to see Paul happy , alert and his usual bubbly self.
We got home and I could see Paul was getting a little tired, Sometimes I think he forgets what hes had done. managed to get him to take a nap whilst i make his chicken curry for him.
Tracolimus goes up and high pottasium
Wednesday 16th November 2011
We got a call from the Transplant team this morning, they said to put the Tracolimus up to 5mg it was 4 last week and that Paul's potassium levels were high, I was quiet shocked as potassium is found in bananas, citrus fruit and juices. Claire also mentioned them, I told her that he hasn't had any of them. All he has for breakfast is cheese toasties and chicken curry for his tea, he's not had any fruit since his transplant. She told me not to worry but to make sure that Paul drinks at least 2 litres of fluid a day water,tea and coffee would be adequate.
Paul is having a good day and is getting use to the changes to his medication. We managed a lovely walk with Hayden in the afternoon. We went into Boots ,our friend Paula works there, she was struck with emotion when she saw Paul, she was so happy that he finally had his transplant and that he was on the road to recovery. It was lovely to see everyone at Boots, they all were really happy for us both. I managed to show my grandson Hayden of too, what a lovely afternoon I had with my two favourite boys. We also went to see Mr Jolly Rodger the lovely man that owns the chippy. He was so chuffed and couldn't believe that Paul was out and about. We met so many people this afternoon and every single one was so overwhelmed and happy for us. A big thank you to you all.
We got a call from the Transplant team this morning, they said to put the Tracolimus up to 5mg it was 4 last week and that Paul's potassium levels were high, I was quiet shocked as potassium is found in bananas, citrus fruit and juices. Claire also mentioned them, I told her that he hasn't had any of them. All he has for breakfast is cheese toasties and chicken curry for his tea, he's not had any fruit since his transplant. She told me not to worry but to make sure that Paul drinks at least 2 litres of fluid a day water,tea and coffee would be adequate.
Paul is having a good day and is getting use to the changes to his medication. We managed a lovely walk with Hayden in the afternoon. We went into Boots ,our friend Paula works there, she was struck with emotion when she saw Paul, she was so happy that he finally had his transplant and that he was on the road to recovery. It was lovely to see everyone at Boots, they all were really happy for us both. I managed to show my grandson Hayden of too, what a lovely afternoon I had with my two favourite boys. We also went to see Mr Jolly Rodger the lovely man that owns the chippy. He was so chuffed and couldn't believe that Paul was out and about. We met so many people this afternoon and every single one was so overwhelmed and happy for us. A big thank you to you all.
Second clinic visit at Leeds
Paul was weighed and we were first seen by the Dietitian, what a lovely lady, she jotted down what Paul was managing to eat, she said if he wants curry everyday so be it, hes still getting the necessary proteins. She advised Paul to increase the calories, that put a smile on my face, I love baking and have baked a few Lemon Drizzle cakes recently .Paul has had the odd half slice, which was a shock as before he would easily manage several slices. he reassures me my baking is still spot on. Before his Transplant he had a very sweet tooth but his taste buds have changed, we were told it could take some time before they come back. She also told Paul to continue with his fresubin drinks and his energy shots as they are very important in the healing process and count towards his calorie intake.
We were seen by Dr Attia today, he asked with Paul had any fevers or rigors (shaking or exaggerated shivering ). I mentioned that he had some tremors had the weekend but his temperature was fine. He said his last blood results had shown white blood cells, which could be signs of the new liver trying to reject. He told us to keep an eye on his temperature but apart from that he was happy with his progress.we were both taken back with this, but remained calm and took everything on board. Claire one of the Transplant nurses took the rest of Pauls stitches out, they were done in seconds. We handed our letter for the donors faily, Claire had a read and said it was perfectly wrote. I hope they are going to be okay with the letter, the last thing we want to do his add more pain.
We went to get Paul's blood taken and this week got it right, blood first then the Tacrolimus and coffee.
We were seen by Dr Attia today, he asked with Paul had any fevers or rigors (shaking or exaggerated shivering ). I mentioned that he had some tremors had the weekend but his temperature was fine. He said his last blood results had shown white blood cells, which could be signs of the new liver trying to reject. He told us to keep an eye on his temperature but apart from that he was happy with his progress.we were both taken back with this, but remained calm and took everything on board. Claire one of the Transplant nurses took the rest of Pauls stitches out, they were done in seconds. We handed our letter for the donors faily, Claire had a read and said it was perfectly wrote. I hope they are going to be okay with the letter, the last thing we want to do his add more pain.
We went to get Paul's blood taken and this week got it right, blood first then the Tacrolimus and coffee.
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