Short update

Hello everyone sorry weve not posted for a while. Its just a quick update to let you know how i am. Im coming up to 7 months post transplant and everything has gone very well so far. Ive had the odd cold and a chest infection that ive struggled to shake off. Im due to go back to Leeds St James hospital in the next couple of weeks for some surgery as ive developed an umbilical hernia which is now getting a bit painful.Will update again after this surgey. Hope your al well. Paul.

PSC the start.

So eventually the doctors at North Manchester General started to get my ulcerative colitis under control, this was something i was going to have to live with for the rest of my life.  I have to admit that the thought of having to have my bowel removed scared me to death, this is what the docs had said could be the outcome if they couldn't get it under control. First of all i was given a drug called Messalazine (anti inflam) and predisinlone (steroid), the Pred came in a aerosol which you had to fit a thin tube on the end of and insert up your bum,not the best start to the day. I had to take the anti flams 3 times a day, anyway the up shot of it all was the got my UC under control. During this time i had 6 monthly colonoscopys to keep a check on the inflamation of my bowel. Through regular blood tests I was eventually diagnosed with psc. Sometime in 2004 I became quite poorly I really cant explain the feeling, i did say to my Naz it felt like there was something wrong with my blood. After taking paracetomol Naz told me that we should go to Casualty at NMGH. After blood tests the doc told me that my liver enzymes were way to high and that they would like me to stay in the night. I n the early hours of the morning another doctor asked me how i felt and i said the same. He then said we are going to give you some anti biotics and i could go home. Which i did with disastrous consequences.

A well earned break in Oxford 6th January 2012

We are having a lovely weekend away, I can't remember the last time we went away for the weekend. It feels a little strange and scary but I know Paul will be fine. Got all his medicines  and protien drinks stacked up for the weekend. Who would of thought  10 weeks post transplant that we would be going away. I can't tell you how grateful I am to our Donor and his family.

We're going to live life to the full, that's one thing alot of people take for granted, We have been given a second chance of a beautiful life.I know I use to take everyday for granted, but with everything I have gone through it certainly gives you a different aspect.

Paul won't be having home made chicken curry for two days,(poor thing) we are going to try different restaurants to see if it brings back some of his taste buds. (It's common after Transplant that your taste buds change), mainly due to Tacrolimus.

What ever you all do this weekend, have a safe and lovely time.
As I have said in my other Blogs if anyone wants to ask any questions, PLEASE don't hesitate to ask. I have been through the carer part and Paul through PSC. We would love to hear from you.
We would also appreciate any comments about our blogs and if its helped any of you.
God Bless you all

Nazx

Liver Clinic Tuesday 3rd January 2012

Paul is full of the cold, which is a nightmare, as it is a lot harder to shift with his suppressed immune system. We were at clinic at Leeds today, Paul has lost quiet alot of weight, He's hardly got an appetite, this was even before he started with the cold. We were seen by the dietitian who said he will have to carry on with the Fresubin protien drinks and try and eat little amounts of food. A little is better than nothing. she was really nice and told Paul of the importance of the protien drinks.
We were then seen by Dr Attia, he's such a lovely well mannered Doctor, who listens to your concerns and answers your questions honestly and makes you feel at ease.
He told Paul that if he doesn't take his protien drinks, then he'll have to have a feed through his nose, which isn't pleasant.
A couple of weeks ago Paul started to complain of horrendous back pain, he describes it has if its going to give way. I have started to help him get out of bed recently and when hes sat up. we told Dr Attia and he sent Paul for an x-ray. (Paul thinks it might have alot to do with the epidural he had) but he suffers from osteoporosis. Were back at clinic in two weeks so hopefully will get the xray results. Hes got a slight temperature tonight but hopefully this will go down, its such a stressful and worrying time, its part and parcel of the Transplant.

A picture of our friend Ben and Paul, Ben has PSC and is waiting a liver transplant. 1st January 2012

This is lovely Ben who was having a liver assessment when, Paul was recovering from his transplant. We pray he gets the crucial call soon. We met at the liver clinic on Tuesday 13th December 2011.  Ben has created a blog for sometime, please take a look: Bens PSC Story.

Christmas

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

For My wife Naz, who lives inside my Heart