Friday, 31 October 2008
Firstly her mum texted saying Hols wasn't as sick or drowsy as she had been previously and was looking much more like herself, and then I received a few texts from Holly, saying she's not feeling too bad and that she managed to have a shower (any post transplant people reading will know how vital the shower bit is to start you on the road to feeling human again!) She has also been walking around with the physio and did some stairs yesterday!
Kidney still fast asleep but scans continue to show it looks absolutely fine. Anyone got an alarm clock...?!
Wednesday, 29 October 2008
Today Hol's has made progress and been moved out into the Transplant ward which is great! This naughty kidney is STILL not working however, and so she remains on dialysis. She is still feeling pretty sick too, so needs lots of warm thoughts heading her way.
Thank you for your ongoing support,
Monday, 27 October 2008
The kidney is still not working but the good news is they did a scan to check everything and it all looks fine. She's on dialysis at the moment just to support her body till this kidney decides to wake up. Hopefully just a matter of time and as her mum said "it's now a waiting game".
Holly is in the Royal Liverpool Hospital in ward 9A if you would like to send a card.
Thanks for your ongoing support :)
Sunday, 26 October 2008
Update from Holly's mum: Holly is still doing well. She sat out of bed for a bit this morning (yay Holly!) but felt quite weak and is still having some pain. She seems better tonight and everything is generally moving in the right direction....Mr Kidney still has to wake up and start working though.
Willing that kidney to kick in!
Thank you for those lovely wishes and thoughts, and do keep them coming, they are getting passed on to Holly by her family.
Saturday, 25 October 2008
Holly texted me yesterday saying she had been called with the news that they might have a kidney for her. Many hours passed with no news until we got the fantastic message that the transplant was going ahead! She came out of surgery in the early hours of the morning and everything went well.
Even more amazingly, I later received a text from Holly herself! She is doing ok, a little sore and feeling “quite dopey” but is sounding like her usual positive self. The kidney has not yet started working – this is quite normal, as it often takes a little while for the new organ to get going – but please send her all the positive vibes you can.
I will update here on Holly’s behalf but hopefully that won’t be for very long at all as the lady herself will be back as soon as she can.
Thank you for all your support for this wonderful lady – we are so proud to have her as a LLTGL advocate.
Friday, 17 October 2008
It was my 3 monthly check up with my consultant on Wednesday morning (before uni) there were a few things to talk about, we discussed my tablets which I will need to change soon (my alucaps) because if you take them for more than 3 months the magnesium builds up in your bones and makes them weak. I am disappointed as these are my favourite phosphate binders (having favourites, how sad am I?) because they aren't too big and dont take much fluid to swallow. The new tablets he will put me on in a month will be BIG chewable ones that taste horrible apparantly. ewwwwww, something to look forward to! The consultant also said that my HB (hemoglobin/blood count) is low and that I would need Iron infusions to give me a boost and push this figure up! I had been feeling tired recently, thought it was just normal, it was probably down to this. He also mentioned my high pulse again, his solution is that I am unfit and need to do more excersise to bring it down, its easy for him to say, I cant exactly run a marathon after dialysis, in fact sometimes I struggle to make the car without feeling lightheaded. Finally he had a look at my arm and felt the stent and agreed with the surgeon that all was fine!
So some things to change but on the whole an O.K report! (Don't know how all this slipped my mind!
Thursday, 16 October 2008
On Monday I had to get up early and head on up to the Royal Liverpool for a scan on my fistula in my arm, I was convinced that the bulge in my arm had got bigger therefore I would need more balloons meaning more surgery! However my theory was disproved as it hadn't got bigger at all (if anything its got smaller) and the great news is I don't need anything doing, well not at the mo anyway! I need to go back in 2months for another scan just to keep an eye on it! The surgeon did the scan himself and took some measurements for the trial I am part of! So all good news!
I then had a full day at uni on Tuesday and went out for a chinese with my friends Steph and Gary! It was my turn to drive this time so I picked Gary up on the way and headed on over to Frodsham which is about half an hour away. We had a lovely time chatting and laughing away, its good to see them away from the hospital and not just talk kidneys and dialysis.
On Wednesday I had another full day at uni, a big lecture on doing my dissertation! Very scary! The headed on over to Warrington Hospital for Dialysis, which was ok apart from the end when I felt a bit funny and got terrible cramp in my big toe! It brought tears to my eyes, the most annoying thing is that I can't move (get up and stamp my feet) the nurse was very nice and filled up a rubber glove with hot water to hold onto the cramp to ease the pain! Cramps happen when you are taking alot of fluid off or taking too much fluid off.
Felt ok today, a bit tired but not too bad, I think its all the early mornings and uni catching up with me. I went again today, just for the morning and then this afternoon we were babysitting our friends little boy Peter. We had fun playing trains and watching in the Night Garden. Andy brought Abigail round for an hour as well which was nice but they had to make a quick dash for it as Abigail was having a bit of a tantrum (hehe starting early)!
Also had a phone call this afternoon from Kelly at Raw Television (the battlefront campaign) she has asked me to fill out a CRB form online and I need to take my Identifications to the post office ASAP for them to check them, this is necessary for all the people that finished in the top 10. Kelly then went on to say that it was even more important that I do the CRB quickly as I had made the judges top 3!!! I need to speak to a psychiatrist/psychologist (can't remember which) on Monday at 4pm to see if I am a suitable candidate to make that coveted 20th spot inthe Battlefront! Really happy about this, just need to wait till 3rd November to see who wins!
Finally my plans for next week are...
On Monday I'm excited to say Emily from Live Life Then Give Life is coming to stay the night as she is up in the North West to do a talk at the Manchester Royal Infirmary on Tuesday. I might head up to Manchester in the morning to help her set up the LLTGL/Organ Donor stand before I go to uni in the afternoon (Can't wait to catch up Emily). Talking of Live Life Then Give Life they have a great new blog which you can visit here, I feature in their latest blog!
On Tuesday night I'm at my friends birthday night out, we're going bowling and then heading into town for a few drinks.
So thats all the gossip really, will keep you updated with the Battlefront competition!
Monday, 13 October 2008
The judges are meeting today to decide who out of the 10 makes the top 3! They will contact these people on the 14th to be told they have made it... It is then up to an independent psychologist to discuss with the top 3 the implications of running a campaign to see if they would be up to the job, I'm unsure as to whether they decide fully on the winner but it will be announced on 3rd November! I'll keep you posted...
Finally I was asked to write another article for my university newspaper, nothing much has changed since the last time I wrote so I decided to come at it from a different angle and speak to Jen and Emily from Live Life Then Give Life and write about their experiences! So thanks to them for that!
Here's the article if you're interested. It probably won't be printed till November so you're getting a sneak preview...
A few months ago I wrote an article about how my life changed when I was diagnosed with Kidney Failure and was told that I needed a kidney transplant. Nothing has changed since then. I am still dialysing 3 times a week for 3 hours at a time and I am still waiting for that call to say a suitable kidney has been found.
A call that will transform my life. I know this from personal experience as friends of mine have received that very phone call and ultimately the greatest gift of all - the gift of life. I am lucky as dialysis can keep me alive, other people on the transplant waiting list aren’t as fortunate and don’t have this luxury, for them it is life or death.
One such person who was in a situation like this is my friend Emily Thackray aged 24 who is vice chairperson of the charity Live Life Then Give Life. I got to know her through the charity and was totally inspired by the work they do in raising awareness about the importance of organ donation. Emily was born with cystic fibrosis (CF) and In 2005 she was told that CF had damaged her lungs so badly that she would need a double lung transplant within a year in order for her to survive.
Half of the people waiting for a lung transplant will die on the list but throughout her wait Emily tried to remain positive despite facing many hurdles along the way. Thankfully in 2007 the wait was over for Emily and she received that call and had a successful double lung transplant. She would not be here today were it not for the brave decision and generosity of her donor family. Since her transplant she has had a rollercoaster of experiences including getting married.
“I don’t think I’ll ever be able to find the words to express my gratitude to my donor family; they gave me my life back and I intend to make every breath count.”
Another friend of mine called Jen Dickinson aged 26 was also told she needed a new kidney. Just one month before she went on the waiting list she was a healthy young woman with lots of plans for the future.
She knows as well as I do to be told that you must be attached to a machine in hospital 3 times a week for an indefinite and unknown amount of time is devastating. Jen felt her future suddenly seemed very bleak indeed. She, like me, was dependent on drugs, hospitals, doctors and machines. She started thinking all the time about kidneys and transplants and the thought of the future seemed very hard to deal with.
Then one day, out of the blue, Jen received a phone call that changed her life. She has a new kidney allowing her to do things she couldn’t do before such as drink and eat what she likes. She now has the energy to do all the activities she loves and can spend time visiting friends and family. These are also things I look forward to doing in the future when that call comes to say that a suitable kidney has become available for me. I will then be able to lead a normal life and do the things I want to do.
“The new kidney has made a huge difference in my life: I have more confidence, feel more independent and I am living my life to the full. My donor hasn't just given me a kidney, they have given me back my future.”
Although having End Stage Renal Failure has many restrictions and has impacted greatly on my life I try to remain positive and am aware that it has allowed me to do things I would never have had the opportunity to do. I have met so many great people such as Emily and Jen through the Live Life Then Give Life Charity (of which I am the North West advocate) .We are all working towards the same goal in raising awareness of organ donation and trying to increase the number of people signing up to the donor register. Hearing and seeing the difference that a transplant can make to people’s lives gives me hope for the future that one day I will get the call and then I will be able to do all the things I have dreamt of.
I have also entered a campaign in the Battlefront competition (http://battlefront.co.uk/campaign/the-gift-of-life/) to raise awareness of this topic and to get people thinking, talking and doing something about organ donation. I have been astounded at the support and numbers of votes it has received. My campaign finished in 2nd position out of a possible 62 meaning I am still in with a chance of appearing on a TV programme to be shown on Channel 4. I am determined to make it through to the final stages of the competition as I know this campaign really will save lives maybe even my own.
Thanks again for all your support for my Battlefront campaign it really is appreciated! x
Tuesday, 7 October 2008
I have slipped from the top spot for the first time since I uploaded my campaign! I'm in 4th place at the minute, It isn't essential for me to finish first to win the competition (have to finish in the top 10) but it would be nice!
You can vote by clicking here!
Thursday, 2 October 2008
I'm enjoying being an Auntie and have been round to visit Mum, Dad and Baby lots. Its actually my Bro's birthday today so bought him a cake from Abigail saying "Happy Birthday Daddy, Lots of Love Abigail!"
The first bit of news is that Live Life Then Give Life won the Charity Times Award for "Campaigning Team of the year!" So big congrats to them, they do a great job of raising awareness of organ donation through talks and the media etc and supporting people who are waiting for a transplant (I know this first hand) The judges at the awards said they were"an outstanding campaign made up of many effective and innovative strands and approaches, achieving great success”! I say here here!
In other news the Battlefront campaign (on organ donation) is going great and I have been at number one from about 2 days after I uploaded it which is fantastic, so if you have voted, thank you I really appreciate it. Heres a bit more about the campaign...
"Did you know that 1000 people die every year because of the shortage of organ donors in the UK? In 2005 I went on the kidney transplant waiting list after a sudden illness caused kidney failure. I'm now kept alive by a dialysis machine which I’m attached to 3 times each week. For many others on the waiting list this isn't an option - for them an organ transplant is a matter of life and death. My campaign will raise awareness of organ donation and encourage more people to think, talk and do something about it. As a result, this campaign will save and transform lives, perhaps even my own. Waiting is tough! However I have seen the difference a transplant can make and this gives me hope for the future that I will be able to do the things I have dreamt of."
I have had loads of comments which are lovely to read too, the entries have closed now but you can keep voting until the 8th so keep going if your computer allows you to do it more than once! If you haven't already done so please vote here. An article appeared on a local website about my campaign, you can read that here. I get a phonecall on the 9th/10th to let me know if I have made it into the top 10 and if so then its over to the judges. So I'll keep you updated!
I also started back to uni this week, Its scary to think how the time has flown! I can't believe I'm in my 3rd year, doing my dissertation! Next year I'll be out in the scary wide world! So this is were the hardwork starts!
On Saturday me and my folks went to Blackpool for the day which was lovely, we went in the tower to see the circus which was fab but some of the acrobats left my heart in my throat!
On sunday me and my friend Hanne along with her Daughter Ellie went to the open day at the local firestation, we pretended that we were taking Ellie but in reality we were looking for hunky fireman! We were really disappointed as they were all old! Ellie enjoyed the afternoon though and even got a sit in the fire engine!
Live Life Then Give Life! We had a lovely evening of chat (some intellectual and some not so) and a meal! We talked about LLTGL and the battlefront campaign, thanks for all your help Em. I have invited them to come up for a weekend in the future (Em if your reading this, I hope you take us up on the offer.) It feels like we have known eachother for ages and yet have only met twice, It would be great to spend some more time together! Heres some pics....
As for my Fistula its still a bit sore on needling and you can still feel the stent under the skin, I will be asking the surgeon about this when I go and get it scanned on the 13th. I'm also seeing my dialysis consultant that week on the 15th so I'll see how everything is ticking along then. This months clearance was 75% which is good for 3 hours and the highest its ever been for me.
Sorry this blog has been a bit bitty with news...