Friday, 28 August 2009

Step forward...

Another step forward...

I went to the hospital in Liverpool today ON MY OWN! I am not the most confident when it comes to driving on the motorway but have had a few practice runs with the olds and today I took the plunge! I was totally fine (I knew I would be) and got there well on time arriving at 9.30am. I took my ticket in the blood room and took my seat... I then looked up at the bored and realised there was nearly 30 people in front of me! Oh well.. I will remember to take a trashy mag next time! So I twiddled my thumbs and at 10.20 my number got called, bearing in mind I should have taken my tablets at 10! I sat down on the chair and told the phlebotomist that the ward should have sent the forms down so she went off to look for them.. but guess what! They weren't there!

I wasn't impressed to say the least... I had waited for so long and was going to have to go up to the ward to get the forms anyway! Which I did, luckily the lady was nice enough to let me go straight to the front when I got back... I'm sure people just thought I was pushing in.. oh well!

The lady also told me that if it gets near 10am next time that I should just tell them and they can push me to the front so I can take my tablets on time, so thats worth remembering!

I've just had a phonecall from the hospital and my magnesium is low, so I've got to eat lots of veggies (yuck) and red meat! I won't get my tacrolimus levels back till Tuesday and then I am at clinic again on Wednesday to get both the Tac levels checked and the magnesium!

So thats it for today really... did a little but of shopping with my Mum earlier on! We are so looking forward to our weekend with Abigail, she makes me laugh so much! If I hadn't of had my transplant there is no way I would be able to have gone on half the days out with her that I have! Helping my folks look after her keeps us busy and I just wouldn't have been able to do it before... so I am so thankful that I can spend so much time with her, and of course the rest of my family!

So there you go... no stopping me now, Birmingham on my own, train home from Manchester on my own, London on my own and now the Hospital for bloods on my own.... New York 2010? Who knows....

Thursday, 27 August 2009

I did it...

Well as the title suggests, I did it! I went to London all on my own!

I haven't updated the blog in a while... I bet you all thought I got lost in the Big smoke didn't you!

I traveled down there early on the Saturday, catching the 7.20am train from Warrington Bank Quay and arriving at London Euston at 9.10am! ( I usually would still be in bed at this time in on a Saturday morning!) I got myself a taxi from Euston to the hotel as I wasn't confident yet in the thought of traveling on the underground (maybe next time).

I was one of the first to arrive, the conference suite we used was great, Starbucks coffee and tea on tap! It was so fab to finally meet up with the most of the advocates from Live Life Then Give Life (we missed you Jess and Jac) they are all totally great, brave and inspirational people! Emily was there and two of the trustees, Mandy and Pops, me and pops got on great and hit it off straight away (put it this way, at any future events, Emily will probably not sit us next to each other as we giggled too much!)

We brain stormed ideas, role played scenarios, did quiz's, team building and (my favourite bit) sharing our personal stories... the challange was to tell our whole stories in 3 minutes, this was a challange! Everyone's stories are so interesting, unique and moving... there wasn't a dry eye in the house once everyone had finished!

That evening we went out for a meal at an Italian resteraunt, Strada. We got to relax and chat about the usual things such as shopping, jobs and of course THE napkin boobs! (see the picture below) This is a skill I won't forget in a hurry (thanks Lisa) the waiter was great and really got into the spirit of things!

And a more sensible photo....

Later that night me and pops made a deal that she would call into my room at 1.30am so we could watch the x-factor and then go back to sleep - We had a right laugh and eventully pops left me to get to sleep about 3.15am!

The following day Sarah Milne from the Gifts of Life photo project came along to take some pictures of the advocates, here is an example (see below). We worked hard at the weekend but this was balanced out with plenty of fun and laughter! I came away with some new ideas and inspiration for my role as an advocate but most importantly I came away with some fab new friends!

Other things that have happened this week, I went to the cinema to watch the Ugly truth! It was a really funny film and I love the acter Gerarrd Butler who played the main character! He wasn't particularly good in the film PS I love you, but certainly redeemed himself with this film!

Yesterday I did my final piece of uni work (I deferred it because I was still recovering from transaplant) it was a presentation, I had to do an A1 poster on leadership in Early Years settings and a paper to go along with it (1,600 words) to summarise the main points of the presentation! I think it went really well, I tried not to read to much from my notes. I was a bit nervous, as my previous presentation such as campaign ones or LLTGL ones are about me, I can't really go wrong, so this was different I actually had to learn and understand what I was saying, which I did in the end after a few practices before hand!

So thats it, I have finished uni... no for the results, well I know most of them.. the results for this one will mean I will finally have my degree classification and can graduate with my friends in November at Chester cathedral!

Today I spent the day with my folks, Abigail and some friends (and their kids) It was great, we went to a local park, Walton Gardens, had a picnic and generally just chatted whilst the kids amused themselves!
The ladies are going to America (New York) next year and have invited me (and I think my Mum) along with them! Arghhhh! I sooo want to go, for those of you that know me, you will know I want to go on a shopping spree in New York and I would love to Ice-Skate in Central Park! I am hoping to go (will have to save up some pennies) but I also have a wedding to go to next year, at around the same time (Easter) and that is in Ireland, so who knows! But watch this space!

Healthwise forgot to mention my Tacrolimus Levels having been playing up again, I went to clinic on Monday and they didn't seem to concerned but had to go for bloods on Tuesday and I am going again tomorrow, I then have to ring on Monday to see if they need to reduce my Tacrolimus any further (It got reduced last week from 2.5mg twice a day to 2mg twice a day) then if it does I will have to go for 2 more blood tests next week!

Finally (this really is a long blog, I really should start doing lots of short updates instead of massive ones!) Abigail is staying over on Saturday night! It will be her first time sleeping here, My Dad, bro, his wife and her family are off to see the mighty Warrington Wolves compete in the challange cup final at Wembley! So me and Mum are having a fun packed weekend with the littlun! Can't believe she will be 1 a week on Saturday where has that year gone! She can now say a version of Holly and the word of the week is toaster! So cute!

Of course none of the above, or anything I do day to day would be possible with out me receiving my transplant (I celebrated 10 months post transplant this week) I think of my donor often and hope they would be proud of what I am doing with my new lease of life.
I hope and pray people (like Jess) waiting on the transplant list receive their gifts of life soon, so they too can have a second chance at life!

Sunday, 16 August 2009

Still here

I have neglected this blog for long enough... Were any of you readers worried?

I'm pleased to say that my Tacrolimus levels are back to normal, no idea what caused them to go sky high, maybe interactions between tablets. I have a clinic appointment on 24th August so will be getting my levels checked before that date. I will also be speaking to the doc about my Sodium Bicarb tablets, I was lazy recently and wasn't taking as many as I should, but now I am taking the prescribed dose I keep getting bad stomach pains, so I will see if there is an alternative tablet I can take.

So what have I been up to... (short but sweet)

  • I have been enjoying spending time with friends, having a good old gossip, playing drinking games and having lots of fun in a hot tub!
  • I have also spoke to a journalist who was keen to hear my story, if I find out anymore about this I will let you know.
  • I have been doing Uni Work, as some of you may no when I was recovering from my transplant I had to defer an assignment... luckily it was only one, I completed some of them from home without attending lectures. I have to create an A1 poster on Leadership in Early Childhood settings and a 1600 word essay to back the information up. I am making good progress with this so I am hoping it goes well when I present on the 26th August.
  • I had my shoot for the Gifts of Life project! This was lots of fun, Sarah, Wills and I wandered around Manchester while she took pictures of me in various places! Including some eating an Ice-Cream! Can't wait to see them. You can get an account of the shoot here on the Gifts of Life blog. We then had lunch and made our way to the train station, I got the train home on my OWN!

Heres a picture from the shoot - me enjoying my ice-cream, which I couldn't really have before transplant because of my fluid restriction.

I'm getting good at this doing stuff on my own lark, this was good practice for me traveling to London on Saturday for the Live Life Then Give Life's advocate weekend, I am so looking forward to it, although I am still a bit nervous, this will be my furthest trip away from home and I will be staying in the hotel on my own. I know its got to be done and I will wonder what I have been worried about all this time. Watch out you guys... I will be traveling up and down the country soon and will need places to stay!

I think that's about it for now, will try and update on my goings on this week before I head off on Saturday, and I will try to make it a more interesting blog (without bullet points)!

Sunday, 2 August 2009

Putting things into perspecitve...

Just a quick one to say all is well.

Some of you may be Facebook friends and might have noticed over the past few days that I have been keeping you up to date about what has been going on health wise, but for those of you that don't know this is just a quick blog to let you know how things are going.

On Wednesday I went for routine blood tests, to check all the usual things including my Tacrolimus levels, Tacrolimus is one of my imuno-suppressant (anti-rejection) drugs. The normal levels are between 7-10 and I have never really had any major problems regarding this before. To check the Tac levels you have to have your blood taken before you take your morning dose, so for me this is before 10 o clock, this is to check how much tac is left in your system from the dose taken the night (12hours) before.

I had my blood test and never really thought anything of it, nothing has ever come back majorly wrong before, I went out for the day and returned home to an answerphone message from the doctor. I usually don't even bother ringing up for my results (maybe a bit lazy) because I always think that if there is something dodgy happening, someone will ring me although I had never actually thought about it before. My heart sank a bit when I heard something was up, this is my first proper blip since transplant, my tac level was 30! I have heard of people having major shakes, sickness, diarrhoea, and even hallucinations from readings much lower than this so I immediately thought that it was a rogue result.

Phonecalls back and to, to the hospital took place and I was told not to take my Tacrolimus that night and to go for bloods the next morning (again before tac) I kept telling myself that the result must have been a mistake, but it did play on my mind quite a bit. I rang up after 6pm this is when the levels are usually back only to find that the level was still high but had come down a bit and was now 20. At this time my Creatinine was also playing up a bit which was also a bit worrying, well worrying to me anyway, doctors and nurses I spoke to didn't seem concerned so that reassured me a bit. Again I was told not to take my Tacrolimus and to return again the following morning! I went out for the day again and tried not to think about it too much, I rang up after 6pm again and found out that my level was now 10 and back within its normal range, to say I was relieved was an understatement. My creatinine was on its way down as well which was a good sign!

I was told I could start taking my normal dose of Tacrolimus again and I am due in clinic on Monday afternoon anyway. Before my main clinic appointments I have to do a 24 hour urine collection, I can't believe I am actually writing this, but hey this is what you get when you have a kidney transplant, its all talk about wee! I then have to give a small urine sample and also get my blood tests done as well. My tacrolimus levels can't be checked at these clinic appointments as they are in the afternoon and I will have already taken my tablets by then so the levels won't be accurate, this is why I usually go for my levels a couple of days before (hence going on Wednesday). So I will have to have a blood test when I go to clinic on Monday to check my clearence in correlation with my 24hour sample and also may have to go back on Tuesday or sometime next week to check my Tacrolimus levels are back on track and my creatinine has settled down too!

So there you go! I am totally fine, I haven't been feeling ill whatsoever! It has been a bit of a pain having to go back every day for bloods, but its for my own good (and the good of Ivy, My kidney). It just puts things into perspective a bit more, maybe I was taking for granted that everything was going so well, not taking for granted the things I am doing or enjoying, But just taking advantage of feeling so well and healthy again.

It just shows you that things can change so quickly, I am not about to take this chance for granted and will be thankful for every minute.