So I have been promising for a while to write about "The Call" , Ironically it is exactly 4 years ago to the day that I started dialysis. Who would have thought 4 years down the line I would be writing about receiving a transplant. So here goes....
24th October 2008. - 3.15pm
It was a normal day, me and Dad were out and about running a few errands, one being getting new windscreen wipers for my car! We had been into Halfords and the nice young chap was starting to fit the wipers when my phone rang. The caller display said "unknown" and I just presumed it was maybe my brother ringing from work. The I heard this voice saying "hi its Helen from the Royal we think we've found a suitable kidney for you!" After that her words just merged together and I had to pass the phone to my dad as I couldn't hold back the tears! I felt sorry for the poor lad fitting my wipers - Dad was talking seriously on the phone, taking all the information in and following the instructions, whilst I was having hysterics.
The poor lad from Halfords wondered what was happening so we felt obliged to tell him, he wished me good luck and we were on our way home, with a thousand thoughts running through our heads. It was lucky that my dad was with me and was able to drive me home as I was in no fit state.
At first I was told to go to my usual dialysis unit at Warrington but then a second phone call came telling me to go to the Royal straight away. The transplant co-ordinator was lovely to me and asked if I was ok, as she realised I was upset when I was speaking to her the first time.
So whilst my Dad drove me home, I rang my Mum who was doing what she does best - shopping. I asked her to come home as quickly as she could. Because I was crying on the phone she thought I'd had an accident in the car. But not wanting to miss a bargain or even her place in the queue, she still managed to buy 2 t-shirts in the 70% off sale! I phoned Andy (my brother) in work but he hung up on me because he was busy but he managed a quick text to ask what was up as I don't usually ring him in work. On hearing the news that I had received the phone call he immediately phoned back.
I was determined not to look scruffy when I got to the hospital so on arriving home I quickly jumped in the shower and washed, dried and even managed to straighten my hair but passed on putting the makeup on! Mum arrived home from shopping with bags in tow, Dad was in the loft getting my suitcase down (pink of course). Despite waiting over 3 years for the call nothing was prepared, my mind just went blank about what I needed to take, so I phoned good old Emily T who told me a few essentials that she found useful during her transplant journey, she was very reassuring and managed to calm me down!
At this point Mum (despite having purchased her bargains) was as white as a sheet but insisted she was fine. All things considered though we were all quite calm.
4.30pm
We set off for Liverpool at 4.30 sending a few texts on the way. Despite it being the Friday rush hour we arrived at the Hospital about 5.10pm and went straight to the ward where we were shown to a little room and left for an hour with no-one explaining what was happening. We expected to be rushed in and lots of hustle and bustle but it was totally the opposite. After an hour (it felt more like 5 hours) the registrar came and introduced himself and said that the bed was ready for me to have my dialysis. I was told that they would take my blood whilst I was on the machine and use it for the purposes of cross-matching and tissue typing. I was pleased about this as I'm not good at parting with blood as my veins are rubbish.
6.40pm
I started my dialysis treatment, so what were my Mum, Dad and I to do for the next 3 hours, what do we talk about? Guess what mum did when I was safely on the machine - she went to the hospital shop on the pretext of getting something to eat. Dad and I resorted to doing a crossword in a woman's magazine with me providing the answers while dad wrote them down (as I had my dialysis needles in my fistula in my right arm).
8.45pm
Andy arrived to see me. Meanwhile a different nurse came on to the night shift and introduced herself as Lucy. She was really friendly and we had a good old chat about her kids. I was then seen by the transplant surgeon who really didn't have much to say to me, never mind I thought if he is good at his job that's all that matters! Looking back now I realise he was probably just as stressed as I was! Next to come along was the anaethetist who introduced himself and filled in yet more forms.
At this point we still didn't know if the transplant would go ahead or not.We had to wait for tests to be completed and results to be checked and we were told that we would know either way at around 10.30 at the earliest. I was nearing the end of my dialysis and the next person to appear at my bedside was the registrar. He was very friendly and explained exactly what would happen during the operation. He told me that as soon as my dialysis was over I would need an ECG to check that my heart was ok as well as a chest x-ray.
10.35pm
I finished on the machine, my arm stopped bleeding and I had the ECG which was fine. Then yet another nurse come along and says "right it's all go! Blood tests, cross-matching and tissue typing are all ok and we are going ahead as soon as possible" He produces a sexy gown for me to wear along with netty knickers and even more sexier stockings to put on. No time for the chest x-ray, as I am told to go and have a shower and put my sexy outfit on asap. The surgeon came back and hovered by the bed while I went to the shower room. No sooner had I got out of the shower and returned to my bed that he appeared again and said"right were off" at the same time throwing all my belongings off the bed!
11pm
By now the surgeon was in such a rush that he and nurse Lucy pushed me in the bed themselves, no time to wait for porters! I said my goodbyes to my Mum, Dad and Bro, at the ward, the surgeon made it clear that they weren't getting any further, not even to the lift! I surprised myself at how calm I was, only a few tears, Lucy was great at reassuring me and gave me a big hug and a kiss as she left me in the pre-theatre room!
This is it I thought... my life is about to change....
Monday, 5 January 2009
Sunday, 4 January 2009
Happy New Year Everyone!
The New Year got off to a great start as I received a phone call on New Year's Eve to say that my blood results are the best they have ever been! My creatinine was 161 (previously 187, and when on dialysis in the 1000's) My Haemoglobin was 12, and my White Blood Count was normal. This is being closely monitored at the moment as they have reintroduced the drug (in a small dose) that made it go haywire before! This meant extra trips to the hospital for tests, but it is worth it in the long run, because as soon as I am settled on the drugs they will hopefully reduce my steroids and I will look less like a chipmonk! Lets have a quick game of spot the difference....
I spent New Years at my Brother's in-laws house which would not have been possible had i not received my transplant, as I would have had to attend dialysis with it being a Wednesday night! I had a great night, we had a takeaway and saw in the new year with some champers! Click here to see some pics of the evening!
While I'm here I also wanted to tell you that I received a reply from 10 Downing street regarding my Battlefront campaign and Organ Donation.
The letter wasn't written by the Prime Minister himself... but it did say "Mr Brown was sorry to hear of your health difficulties."
It went on to discuss the suggested opt out system...
"In its report, the Taskforce does not recommend introducing an opt out system for organ donation in the UK at the present time. The Taskforce felt that whilst it would have the potential to deliver benefits, it would present significant challenges that may not be necessary in order to deliver the desired increase in organ donation rates.
The Government has accepted this, but in the light of the Taskforce’s view that donor rates can be optimised successfully without a change in the legal framework, has set a challenge to see 20 million people on the Organ Donor Register by 2010 working towards 25million by 2013."
The reply was useful and it seems that the government are committed to increasing the number of people joining the Organ Donor Register...
"The Government is firmly committed to seeing organ donation rates rise significantly and is fully supporting the implementation of the recommendations in the Taskforce’s first report. A large programme of work is already underway, which includes:
• Each Trust appointing an organ donation ‘champion’ to discuss organ donation with families as part of end of life care where appropriate;
• Recruiting new donor transplant co-ordinators across the UK; and
• Establishing a UK-wide network of organ retrieval teams across the UK to ensure timely and high quality organ removal from viable donors."
I was however disappointed that the letter did not mention the campaign whatsoever,
No mention of Battlefront, nothing!!!
Oh well a reply is better than being ignored I suppose!
Bye for now x
I spent New Years at my Brother's in-laws house which would not have been possible had i not received my transplant, as I would have had to attend dialysis with it being a Wednesday night! I had a great night, we had a takeaway and saw in the new year with some champers! Click here to see some pics of the evening!
While I'm here I also wanted to tell you that I received a reply from 10 Downing street regarding my Battlefront campaign and Organ Donation.
The letter wasn't written by the Prime Minister himself... but it did say "Mr Brown was sorry to hear of your health difficulties."
It went on to discuss the suggested opt out system...
"In its report, the Taskforce does not recommend introducing an opt out system for organ donation in the UK at the present time. The Taskforce felt that whilst it would have the potential to deliver benefits, it would present significant challenges that may not be necessary in order to deliver the desired increase in organ donation rates.
The Government has accepted this, but in the light of the Taskforce’s view that donor rates can be optimised successfully without a change in the legal framework, has set a challenge to see 20 million people on the Organ Donor Register by 2010 working towards 25million by 2013."
The reply was useful and it seems that the government are committed to increasing the number of people joining the Organ Donor Register...
"The Government is firmly committed to seeing organ donation rates rise significantly and is fully supporting the implementation of the recommendations in the Taskforce’s first report. A large programme of work is already underway, which includes:
• Each Trust appointing an organ donation ‘champion’ to discuss organ donation with families as part of end of life care where appropriate;
• Recruiting new donor transplant co-ordinators across the UK; and
• Establishing a UK-wide network of organ retrieval teams across the UK to ensure timely and high quality organ removal from viable donors."
I was however disappointed that the letter did not mention the campaign whatsoever,
No mention of Battlefront, nothing!!!
Oh well a reply is better than being ignored I suppose!
Bye for now x
Tuesday, 30 December 2008
Some Goals and resolutions
- To make the most of my “Gift of Life” and enjoy being free from dialysis
- To go on holiday (I haven’t been abroad since I started dialysis)
- To go back to Uni, complete my dissertation and hopefully graduate with my friends
- To visit Emily T in London and go shopping!
Some resolutions and goals for my Gift of Life Battlefront Campaign
- To video blog as much as we can!
- To get some celebs on board
- To get our logo and pledge out there to as many people as possible.
- To visit as many schools/uni’s as possible to get the word out there about Organ Donation
- To meet up with Mentor Oli to discuss how to take the campaign forward
- To work on changing the law so that people have to make a decision on whether to donate their organs one way or another? No one suggests which way, but to change it so it is compulsory to make your wishes known - be it yes or no.
- To create as much hype as possible about 6th May. (The sign up day)
- To get as many people as possible to sign the Organ Donor Register
x Thanks for all your support in 2008 and all the best for 2009! x
Friday, 26 December 2008
 | |||
| Hey everyone! Hope you all had a lovely christmas day I spent time with my family, enjoying my first Christmas in 4 years free from dialysis and the restraints that came with it. I was able to eat and drink what I wanted and had lots more energy to enjoy the day and the festivities! (I was the only family member who didn't need an afternoon nap) Click here to see some pictures of Ivy (my kidney) and Abigail's 1st Christmas. We popped open the champers, that mum and dad received 3 years ago (for their 25th wedding anniversary). They said they would save it for the first christmas after my transplant! But whilst celebrating, thoughts of my donor weren't to far from all our minds, We released a Christmas balloon in memory of my donor to let them know we were thinking of them and their family. As obviously while we were celebrating my first Christmas with my transplant, they were experiencing their first Christmas without their loved one who gave me the greatest gift of all - The Gift of Life x | |||
Wednesday, 17 December 2008
So sorry I've been quiet...
It just goes to show the difference IVY is making to my life already! I really don't know how I found time to dialyse before! I've been out and about shopping, doing uni work and on the 11th December I went in for a little operation to have the stent removed from my kidney (used to keep vein open where it is joined to the bladder), It was under General anesthetic, all went well and it was over in about 45mins.
I even a managed a night out on the town last night with the girls from uni! (Don't worry though I didn't over do it, I was in bed by 1am)! I have also been busy along with Holly's Helpers trying to push forward with the Battlefront - The Gift of Life campaign!
On the Kidney front, everything seems to be going well, my creatinine is 182 and my HB is looking more normal again! All in all I seem to have a lot more energy than before, I can cram lots of stuff into one day rather than having to pick and choose what to do, to conserve my energy! I went to the Hospital on Monday and spent most of the day there as I had to have my bloods taken before 10, had a ultrasounds scan on my fistula (which was fine) at 10.30 and then clinic at 1 (although it was nearer 2.30 when I went in.) So I'm down to weekly appointments now... although they have asked me to pop in for my bloods (before I take my immunos) so they can check the level of tacrolimus in my system, these results take 24hours and so they will be ready for when I go to clinic on Monday! This saves me going in on Monday morning to get them done and then waiting around for clinic in the afternoon.
The Battlefront campaign is coming along well thanks to Emily and Holly's Helpers, we have lots of exciting ideas on how to get the word about organ donation out there! I'm getting more hands on myself which is great. So here is what we have achieved so far...
It just goes to show the difference IVY is making to my life already! I really don't know how I found time to dialyse before! I've been out and about shopping, doing uni work and on the 11th December I went in for a little operation to have the stent removed from my kidney (used to keep vein open where it is joined to the bladder), It was under General anesthetic, all went well and it was over in about 45mins.
I even a managed a night out on the town last night with the girls from uni! (Don't worry though I didn't over do it, I was in bed by 1am)! I have also been busy along with Holly's Helpers trying to push forward with the Battlefront - The Gift of Life campaign!
On the Kidney front, everything seems to be going well, my creatinine is 182 and my HB is looking more normal again! All in all I seem to have a lot more energy than before, I can cram lots of stuff into one day rather than having to pick and choose what to do, to conserve my energy! I went to the Hospital on Monday and spent most of the day there as I had to have my bloods taken before 10, had a ultrasounds scan on my fistula (which was fine) at 10.30 and then clinic at 1 (although it was nearer 2.30 when I went in.) So I'm down to weekly appointments now... although they have asked me to pop in for my bloods (before I take my immunos) so they can check the level of tacrolimus in my system, these results take 24hours and so they will be ready for when I go to clinic on Monday! This saves me going in on Monday morning to get them done and then waiting around for clinic in the afternoon.
The Battlefront campaign is coming along well thanks to Emily and Holly's Helpers, we have lots of exciting ideas on how to get the word about organ donation out there! I'm getting more hands on myself which is great. So here is what we have achieved so far...
- We are in the process of getting a logo made - (proofs can be seen on my bebo page)
- I have written to my local MP's, MEP's and even the Prime Minister Gordon Brown himself.
- We have announced our big "Sign up" day which will be 6th May 2009 and we hope to get some celebs on board with this, and of course you guys!!!
- The campaign has appeared in the National Guardian and the Big Issue.
- We now have a link to the organ donor register straight from my Battlefront page Click here to have a look. This will be a great way of measuring how many people have clicked through to the ODR via the link!
- I now have a mentor to help get the campaign going, Emily is hopefully meeting the man himself, Oli Barrett on Friday. Click here to read more about him!
- We have lots of videos and photos up on both the Bebo and the Battlefront pages, so go and check them out!
Tuesday, 2 December 2008
Battlefront
Here is my slide show to promote my battlefront campaign - The Gift of Life... enjoy and please pass it on.
Also here is a link to my Battlefront bebo page... click on it to get all the latest updates on the battlefront campaign and to read my bebo blog!
Thanks for your support x
Monday, 1 December 2008
Hello strangers!
I feel really bad for neglecting the blog but things have been a bit manic recently!
So a quick update....
On the kidney front, things are going well, results are all going in the right direction and more importantly I'm starting to feel the benefits! I have had 4 doses of IV Iron to boost my Hemoglobin levels which are low. This seems to have helped, it's still not normal but it is much improved, I am also meant to have a drug called aranesp which will also build up my HB but my blood pressure has been too high for me to have this so we have to wait for that to sort itself before I can start on the aranesp. I have been put on 2 different blood pressure tablets to try and lower it but the docs think the main reason for it being high is the amount of fluid I have on board. At my worst I was 10kg over my dry weight!!!! Luckily I have been put on water tablets (frusimide) to get some of the fluid off, this is doing the trick and I can finally see my ankles!!! Sadly it won't do anything for my steroid "Moonface" but hey hopefully that will go down when the steroids are reduced, and anyway its worth it!
The downside to this is I'm going to the toilet every 15minutes, meaning I can't go out much, but hopefully I won't be on them for too long and I'll be able to get out and about again soon!
I went to the hospital today and I didn't even have to wait around for my blood results, which is great!!! They said they would ring... they haven't but I'm not worried as no news is good news! They told me I don't need to go back till Thursday so I'm down to twice weekly visits which is great! I've also been booked in for a little operation (day case) on 11th December to get the stent removed out of Ivy (my kidney). This will be done under General Anesthetic, but from start to finish should only take half an hour. Also going for an ultrasound scan on my fistula on 15th Dec, even though I'm not using it anymore it still has to be checked to make sure it's still working and not narrowing again.
In other news the Battlefront campaign is really going full steam ahead, thanks to Emily and "Holly's Helpers" to find out more click here. I also have a bebo page up and running so to have a nosey at that too click here and add me as a friend! All ideas are under wraps at the minute but I'll let you know as soon as possible about any developments!
I'm also busy trying to do a piece of uni work so I don't get to far behind! So its all go, go, go at the minute, I don't know how I managed to fit in dialysis before, the freedom is great! I can't believe its only just over 5 weeks and the difference is noticable already.
I promise to update this more often! Thanks for all your supportive messages! x
I feel really bad for neglecting the blog but things have been a bit manic recently!
So a quick update....
On the kidney front, things are going well, results are all going in the right direction and more importantly I'm starting to feel the benefits! I have had 4 doses of IV Iron to boost my Hemoglobin levels which are low. This seems to have helped, it's still not normal but it is much improved, I am also meant to have a drug called aranesp which will also build up my HB but my blood pressure has been too high for me to have this so we have to wait for that to sort itself before I can start on the aranesp. I have been put on 2 different blood pressure tablets to try and lower it but the docs think the main reason for it being high is the amount of fluid I have on board. At my worst I was 10kg over my dry weight!!!! Luckily I have been put on water tablets (frusimide) to get some of the fluid off, this is doing the trick and I can finally see my ankles!!! Sadly it won't do anything for my steroid "Moonface" but hey hopefully that will go down when the steroids are reduced, and anyway its worth it!
The downside to this is I'm going to the toilet every 15minutes, meaning I can't go out much, but hopefully I won't be on them for too long and I'll be able to get out and about again soon!
I went to the hospital today and I didn't even have to wait around for my blood results, which is great!!! They said they would ring... they haven't but I'm not worried as no news is good news! They told me I don't need to go back till Thursday so I'm down to twice weekly visits which is great! I've also been booked in for a little operation (day case) on 11th December to get the stent removed out of Ivy (my kidney). This will be done under General Anesthetic, but from start to finish should only take half an hour. Also going for an ultrasound scan on my fistula on 15th Dec, even though I'm not using it anymore it still has to be checked to make sure it's still working and not narrowing again.
In other news the Battlefront campaign is really going full steam ahead, thanks to Emily and "Holly's Helpers" to find out more click here. I also have a bebo page up and running so to have a nosey at that too click here and add me as a friend! All ideas are under wraps at the minute but I'll let you know as soon as possible about any developments!
I'm also busy trying to do a piece of uni work so I don't get to far behind! So its all go, go, go at the minute, I don't know how I managed to fit in dialysis before, the freedom is great! I can't believe its only just over 5 weeks and the difference is noticable already.
I promise to update this more often! Thanks for all your supportive messages! x
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