Thursday, 31 July 2008

I got the date for my procedure on my arm... wait for it... 4th September!!! Aggggeeees away so no need to get nervous yet! At least I know now when it is though, I hate not knowing, which is ironic as I don't know when or if I'll receive a transplant, it's just a waiting game! I'm an impatient person and my sister-in-laws pregnancy seems to have gone on forever!

Only 20 days to go till I'm an Auntie! I'm getting really excited now and can't wait to meet the little one! I even felt her kick the other day which was amazing, although it did freak me out a little bit, especially when I actually saw Fiona's tummy move!

Yesterday afternoon I decided to treat my Mum and Dad and take them to the cinema to see Mama Mia! It was fantastic, I loved it, I could have watched it again straight away (sad I know) it's not everyone's cup of tea but hey it was certainly mine and my Mum's (and even my dad's although he won't admit it out loud!)

Had a busy day today babysitting Peter (my mum's friends son) who is 2 now, we spent the day running round and playing with "choo choo" trains! Fiona then came round and we all went out for a pub lunch to our local, which had a bouncy castle for the kids to go on (although I may have made my way on there, only to encourage Peter obviously!) We came home to play some more and as Fiona was leaving Mum decided to tell Peter there was a baby inside Fiona's tummy to which he looked a little confused but started stroking it and saying "baby"! He then lifted her t-shirt up to see if he could see it but looked more confused when he couldn't. Next he moved on to dad and tapped his stomach and said "baby" to which all three of us were in stitches! Kids say the funniest things as they say!

As Peter left we said that he would soon have a little baby friend to play with, no doubt he is impatient, but lets face it he isn't the only one!

Saturday, 26 July 2008

Had a really busy week again this week but kind of feel like I haven't done anything productive!

Had a few lunches out, one with my friend of 12years Helen (gosh I feel old), It's great to catch up now that she has graduated from uni (congrats hun) she is moving up here again to study at Law School, so it will be great to have her close again. I have been on a few shopping trips this week too and bought a lovely dress today, I have no idea when I'm going to wear it, but it looks nice so I couldn't help myself.

Today my mum rang an old school friend and told her to come and check out my blog (hello Una if you're reading this) mum told her to google me, and so I was intrigued and decided to see what would happen if I googled myself (sad I know)! Turns out all the old newspaper and online articles are there including some that I had no idea about, although all publicity about organ donation can only be a good thing. If ya want a nosey the articles are here and here.

Thats all the news with me, not very exciting I know, dialysis has been fine, BP and weight seem to be stable and new tablets (Alucaps) seem to be fine! I haven't heard off the Royal about the procedure on my arm yet, I hope I do soon as the arrival of my neice isn't too far away and I don't want it to conincide with that! Only 25 days to go.....

Monday, 21 July 2008

I have uploaded some of the pictures from my trip to Ireland, click on the links below if you want to have a nosy!

Ireland - Part 1

Ireland - Part 2 (The Wedding)

Ireland - Part 3

Today I went for the ultrasound scan on my fistula, the doc went really quiet so I could tell all was not well. Hmmm interesting he said and I said interesting good or interesting bad. He replied well I'm not going to say just yet so that confirmed my suspicions. Whilst he was scanning my arm he listened to the flow of the blood through my fistula, there was also a sound of the water pipes in the hospital in the background so Mum and Dad were a bit confused as to what sound was my fistula and which was the water as they both sounded similar.

He then explained that the narrowing that had previously been widened has returned and he was worried that it had returned so quickly. So I need to go in to get ballooned again but this time I'm also going to have a stent inserted to keep it open to ensure it doesn't narrow again! So not the best news but hey it can't be helped. Here is a pic of what a stent looks like incase you're interested... The one I will be having will be about 4cm long and when it is opened it will spring out so its 1cm wide.

I may have to keep going back every so often for the stent to be ballooned aswell so the problem won't be completely solved. There is also a slightly higher risk of infection in my fistula after having the stent inserted so I'll just have to be careful about keeping it clean. I wasn't surprised to hear that I would need this done as the last time he wasn't completely convinced that it had been totally sucessful, and I could also tell myself that my arm was getting bigger again (although my mum kept telling me that it was just me, probably to make me feel better.)

I then asked the doctor the really important questions such as will it hurt more than just having it ballooned and will I beep going through airport security if I have the stent inserted, the answer to both questions was no! He then said that there were two choices of stent, a covered one and an uncovered one (not completely sure of the difference) but they are doing some trials to compare the covered one to the uncovered and measure their effectiveness. He asked me if I wanted to be part of the trial, I'm not bothered either way and even if I say yes there is no guarantee I will receive the covered one as they pick an envelope at the beginning of the procedure and whichever envelope is opened that's the stent they use.

After the scan and the chat with the Doc I went up to the transplant ward to see a fellow dialysis patient who received a transplant 10 days ago. She had been waiting for around 5 years and although she has an infection at the moment is looking absolutely marvellous, the change in her colour in that short amount of time was amazing. So hopefully things will continue to improve and she will be out and about soon.

Finally (as I think I have waffled on enough in this post) whilst I was away on holiday I appeared in my local midweek newspaper and on an online newspaper promoting National Transplant Week (Thanks to Em and Em from LLTGL for the press release.) If you want to see the article click here.

So that's all the news really, I don't have to decide about the trial till the day of the procedure and he said he would have more of a chat about it to me then. They'll be in touch soon with a date for when it's going to go ahead.

Sunday, 20 July 2008

Ireland Part 2 – The Wedding

The big day had arrived and we got up early as we had to go to the hairdresser’s to get our hair done. Mum and my Auntie had theirs washed and blow dried, while I had mine washed, then went under the dryer, had it put in rollers then under the dryer again and then put up! It was well worth it as it looked pretty (even if I do say so myself.) We then went home and got into our outfits and set off for the church which was a 15minute drive away. We arrived to find loads of onlookers outside the church trying to get a glimpse of the bride and the wedding, the minister said this was the biggest wedding he had ever been involved in (there were around 200 people there).

The wedding lasted over an hour as the string quartet played, hymns were sung and the groom’s sister (who sang at my brother’s wedding) also did a solo. After the wedding the guests were invited over to the church hall for a light lunch, where the quartet also played again. All the guests then set off for the reception which was taking place at a hotel in a place called Newcastle which is a small seaside town at the foot of the Mourne Mountains. It was over an hour away (I slept for most of the car journey).

The reception was at the Slieve Donard Hotel and started at around 5 o’ clock. The speeches were great and the food was delicious, the tables were decorated beautifully and the attention to detail was superb! Instead of favours the bride and groom made a donation to a local charity called Riding for the Disabled which was a great idea. After the four course meal there was a chocolate fountain with strawberries, fudge, marshmallows etc and then a band and disco. There was a buffet served at around 11.00pm and the dancing went on till around 1 o’ clock, that’s when we left but apparently the chatting went on till 3am.

We stayed over in the hotel and woke up to an Ulster fry breakfast. I just had sausages and bacon and it was delicious (although I was to pay for it later.) After breakfast we went for a stroll in the hotel grounds and along the beach, there was even time for a paddle in the sea (it was absolutely freezing!) We then headed on home back to Armagh as I was too tired to spend the day in Newcastle which was a shame. The road home was not straight (that’s an understatement) it was so windy and twisty and about 30mins into the journey I could tell my stomach wasn’t feeling too happy. We pulled over to get a drink of water and I thought the sooner I get back in the car the sooner we get home but this was not one of my better ideas. About 20minutes later we had to pull over again, this time in a car park, I walked into the corner and was (as discreetly as possible) sick in some bushes, not so glamorous, I was trying so hard to not be sick on my own feet as I was wearing flip flops!!! I thought the sausages and bacon in the morning wasn’t such a good idea, ah well, I will learn my lesson one day!

So the rest of the day was spent taking it easy and sleeping as I had tired myself out! Then it was off to dialysis again which went fine and luckily no clotting this time. Yesterday we went to a local town called Portadown for a bit of souvenir buying and window shopping, and that’s my week in a nutshell really! We arrived back home last night about 11.30 and I had a lovely nights sleep back in my own bed!

I’m so glad I decided to go, I don’t know why I put it off for so long or why I was so nervous about it! The dialysis went fine, the nurses were great and I haven’t got a bad word to say about it at all, it almost felt like I didn’t dialyse at all, it was a real holiday and I will certainly go back in the future in fact… I can’t wait!!!

Ireland Part 1

Well where do I start? I’m back from N. Ireland after an amazing week away! We managed to fit so much into one week! It didn’t get off to a great start as our plane was cancelled and we had to get on the next one which meant a two hour delay, I managed to find some computers and logged onto the internet to kill time, so all was not lost. Our flight eventually left Liverpool at 10.45pm instead of 8.30pm and we arrived at my Auntie’s house in Armagh well after 12.00 and went straight to bed.

The following morning we took a walk round Cabragh which is where my Mum was brought up and where I remember spending lots of time as a child. We walked through the fields that my Auntie owns and made friends with some cows! We then went for a Sunday lunch at a posh restaurant, Mum, Dad and Auntie D had a four course meal, I just had the main. After lunch we visited the church at Loughgall village where the wedding was going to take place on the Thursday but more about that later. That night we were invited round to my Mum’s cousin’s house to see their son’s wedding presents. This is a tradition in Ireland apparently, people are invited to see what everyone else has bought (Mum loved this bit, she’s very nosey). So we had tea and cake and chatted till about 11.30 that night.

On the Monday we did some shopping (my favourite pastime) in a local shopping centre and had lunch there. We went home for a little rest before setting off again for Daisy Hill Hospital for dialysis. It took half an hour to get there we set off at around 5.45 and my shift started at 6.30pm, the nurses were so friendly and really professional, I was on every night before 6.45.

On the Tuesday we went to the local town (Armagh) for a little look at the local shops and in the afternoon we went to Lisburn (about a 45minute drive) to see my mum’s Auntie, who is in her 90’s. It was great to see her and she is looking really well. We spent a couple of hours with her and then headed back to my Auntie’s house where I treated my mum, dad and Auntie to a Chinese takeaway, which was delicious.

I decided on the Wednesday to take it pretty easy as the following day was going to be a hectic one with the wedding. So we had a little walk round the Mall (a green area surrounded by trees in the middle of the town where the local cricket team plays) We used to always do this when I came to Ireland as a child so it was nice to be able to do it again. In the evening I obviously headed off to Daisy hill in Newry again for dialysis which went ok although I did experience some clotting about an hour before the end, but thankfully it held out to the end of the session and I didn’t need to come off early.

Saturday, 12 July 2008

Just a quick blog to let you know that all went well at the appointment with my consultant. My calcium is a bit high, due to me taking calcichews and alphacalcidol so he has stopped both of these, the calcichew permanently and the alphacalcidol temporarily. So my phosphate binders have been changed (yet again) this time to Alucaps, I have taken these before a few years ago so I should be ok with them.

I asked him about my arm but he seems to think it looks ok (I still think its getting bigger) I told him that the ultrasound people hadn't been in touch about another scan so he gave me the number direct to ring them when I got back from Ireland. By coincidence, they rang later that day to book me in, so I'm having it on the 21st July, fingers crossed all is well and I won't have to have another angioplasty.

So thats about it really, I spoke to him about my aranesp and he suggested I could inject it myself on the saturday to save me taking it with me, I think the look on my face told him what my reply was! Theres no way I could do that, and my Mum n Dad couldn't either, so I'll take it with me and have it through the machine on Monday.

So I'm running around like a headless chicken, getting everything ready for goin, cramming everything in my case (although it still won't close) getting my meds sorted, and I also have to take my dialysers with me too, which is the artificial kidney that clips on the machine and filters the blood. So thats something else to remember!

Anyway best go and carry on, so much to do, so little time (you can tell I'm not used to going on Holiday.)

Going to try and get to an internet cafe during the week, will update if I can, if not, See you in a week! x

Tuesday, 8 July 2008

Two blogs in one day, aren't you lucky....

Yesterday I had a rough day, I was sick in the morning, I think this was due to the over exertion the day before with all my walking. It was well worth it though as it got people signed up to the organ donation, raised awareness of Kidney Disease and raised money for Kidney Research!

So today and yesterday I have had a cough and have been feeling a bit chesty, I am going to see my consultant tomorrow anyway, he usually checks my chest and heart so he'll be able to tell me if I am A-OK! I am also going to ask him about my Fistula (in my arm) as since my operation I feel its getting bigger (where the needles go in) maybe its just me as I am really aware and self conscious of it! Would like to put my mind at ease though and ask him to have a look, as the surgeon that did the procedure on my arm said that I should have a scan and check up in a month but I have heard nothing since and its been a month already!

I am also going to ask the consultant about my aranesp (this is an injection into the machine to help maintain the correct level of HB in the blood) as I am going on holiday to N.Ireland on Saturday and need to take some Aranesp with me as I receive it once a week, this needs to be refridgerated at all times! I am also unsure as to whether I should take it in my hand luggage as I don't fancy getting stopped by security on the way in, carrying a syringe that looks a bit dodgy! I'll see if he will give me a letter to go along with it!

Really excited about going away on Saturday as it will be the first proper holiday since I was diagnosed and more importantly the first time my Mum and Dad have been away! We are staying with my Auntie (Mum's sister) and we are attending a family wedding next Thursday so that will be good to catch up with everyone! I will also have 3 dialysis sessions while I am away at Daisy Hill Hospital in Newry (sounds nice doesn't it), I am a little nervous about this as I have never dialysed away from the unit before and am a bit weary of new nurses needling me, but I'm sure it will be fine.

So today's news... I went shopping for a new digital camera to take with me to Ireland, I ended up getting this pink one, it's charging up at the minute I can't wait to try it tomorrow. Also It is my Gran's 84th Birthday today and so she and my brother and his wife came round for tea (a Chinese, with no salt for me, my contribution to the renal diet.) We got her a cake and sang Happy Birthday and she seemed to like all her presents!

Earlier today Emily from Live Life Then Give Life asked me earlier today if I could get hold of a video camera and film a video diary of life on the transplant list to present to the treasury. She said I would have to make it really emotional and sad, not too sure I would be any good at it because I think I'm quite a positive person, put waiting on the list to the back of my head and try to lead a normal life as possible! So not sure how convincing I would be to the treasury, haha! Emily also sent out some press releases to some local newspapers about transplant week and how I am waiting so maybe they will be in touch this week, to get the topic of organ donation out there, and get people talking about it.

National Transplant Week

This week marks the 18th National Transplant week, the theme of the 2008 campaign is "Jump on Board" the NHS Organ Donor Register and join the 15million people that have already signed up.

Transplants in Mind's aim is to get more than 80,000 new names on the Organ Donor Register. The launch is today at the London Transport Museum, the donor bus will be there encouraging people to sign up and volunteers will be on hand to offer information and advice.

Since 1 April 2008:

  • 220 people have donated organs
  • an additional 452 people have donated corneas
  • 661 people have received the gift of sight
  • 655 people have received transplants
  • 7,757 people are still waiting for transplants

To join the Organ Donor Register and join the 15,500,596 people – 25% of the population who already have click here.

Thanks x

Sunday, 6 July 2008

Well I did it, or I should say we did it!

We met up with everyone at the little Roodee Car park at 11.30 and got given a free kidney research bag with some water, crisps, biscuits and apple juice aswell as flags and balloons to carry with us on the walk.

We set off at 12.00 along the river, walking through some gardens and across the bridges! It took us around 45 minutes to do the well over 2 mile course. I didn't even sit down for a rest at any point, I was impressed (even if I do say so myself!) At the end of the walk there was a stand raising awareness of Kidney Research and events coming up as well as a stand to encourage people to sign up to the Organ Donor Register. Everyone that took part also got a certificate for their achievement.

So its completed and thanks to everyone who donated money to Kidney Research, it is much appreciated. I have raised £130 so far and it will make a difference, improving the understanding of renal disease, its causes, treatment and management as well as improving patient care. You can see some pictures of the walk here. I'll leave you with a picture of me and mum on the bridge.

I have added a Blog Roll to the right hand side, its a list of some of the blogs I read. They are all fabulously written and are all connected to the world of transplants, either the person is on the list and waiting like me or they have received their transplant... follow their journeys by taking a look.

Saturday, 5 July 2008

It's been a busy week, can hardly remember what I've done!

On Monday I did a practice 2 mile walk to make sure I could actually do it, this is a big deal for me as I get tired really easily and I didn't want to ask people for sponsor money if I was unable to actually complete it! I did it in about an hour so thats not bad for me. So I'm all set now for tomorrow, I hope the weather stays nice! Thanks to everyone whose sponsored me (on and offline) I really appreciate it!

On Tuesday I had a fun day catching up with different friends, I went to a play barn with my friend Hanne and her daughter Ellie. This was great exercise running around after her and really tired me out, so I had a nap in the afternoon, ready for a night out with some other friends. Me and my friends Steph (whose had a kidney transplant) and Gary (who I dialyse with) went for a chinese and it was great to chat away from the hosp!

On Thursday I spent the whole afternoon at Warrington Hospital in the Opthalmology department! On a routine eye check about a month ago my optician said that my optic nerve was swollen and he was going to refer me. I was a bit concerned as this happened before about 2 years ago and I needed various tests and an MRI scan so I was worried that all this needed to be done again. We had to wait about 2 or more hours to be seen, I had to have special eye drops in that dilated my pupils (I looked like I was on drugs) and made my vision all blurry! I needn't have worried though, the consultant saw me and looked at the back of my eye and said it was scarring from the previous time it had swollen so it would probably always be like this! So all is good.

Finally yesterday there was a bit of a nightmare with dialysis, Warrington Hosp phoned and said that the unit had no water and so patients were going all different places to be dialysed, I was told I would have to go to Clatterbridge for 4.30. So we set off just before 4.00, but on the way there the unit manager rang and said a patient had got there before me and so he would get on first and I would have to wait until 6.30! To say I wasn't impressed was an understament, particulary because he was told to get there for 6.30!!! So we arrived at the unit after about 45 minutes and knew that we would be waiting well over an hour, which isn't the best feeling when you then have to have dialysis for 3 hours and then have to tavel all the way home again. So to kill a bit of time me, my mum and dad went for a walk to a nearby strawberry farm that we spotted on the way in! We managed to pick 2 massive ponnets of strawberries in 15minutes and I'm sure my mum ate as many as she picked! Everytime I turned round her cheeks were puffed out as she had stuffed another one in!

All the patients from my usual shift in Warrington also went to Clatterbridge so it wasn't so bad, I finally got on the machine at 6.30, there were no tellies so the time dragged and the patients actually talked to each other for once, as in Warrington the beds are set out at an angle that patients cant see or talk to eachother! So this made a change and killed a bit of time, but I'll not take the tellies at Warrington for granted now!

So I got home about 11, and watched Big Bro in bed!!!

Will let you know how I get on with the walk tomorrow! x