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  • Coming through the other end!!

    03 April 2014 ( #My Health )

    So its Thursday 20th March and I have just rang the Queen Elizabeth (QE) hospital in Birmingham to check they have a bed to make my way down. They have told me to come straight down and go to the dialysis ward, so far so good. Traffic isn't too bad and...

  • Post 6 months!

    13 November 2014

    I was meant to update my blog at 6 months but I have been so busy that it totally slipped my mind. Clinic has now been moved to monthly which is great news. I had to go back to the doctors about my ears but they finally prescribed me something and after...

  • Where Have I Been???

    01 September 2015

    I am so sorry it has been so long since I have updated my blog. Firstly Kevin is doing well, bloods are stable and I am keeping well. My calcium levels are still too high and i have had to have tests to see if I need the operation which I have dreaded...

  • New Lease of Life

    31 October 2015

    Saturday night and stuck at home = great time to update my blog!! Firstly I had the results back from my fine needle test and it was benign, never felt so relieved. Although I didn't actually receive any results it was just mentioned in a passing comment...

  • Happy 1st Year Kevin!

    22 March 2015

    I have left it way too long to create an update. As Kevin the kidney has reached his first official 1 year anniversary I thought this would be a great time to crack on with it. My first Christmas with Chris and Jasmine with no dialysis was amazing, no...

  • Holidays = happy times

    08 September 2011 ( #My Health )

    Well we went to Bournemouth for a week camping with friends and the weather was so so hot it was like being abroad. The dialysis unit there has 3 stations and is run by Kris and Geraldine who are a married couple and are wonderful. They were so accomodating...

  • Day of Button Holing

    29 March 2011 ( #My Health )

    Well the day has finally arrived when I will be starting the button holing technique. One of the nurses is going to come out to me and we will decide on two new sites and then it will be up to me to make sure the needles go in right. Once in tI can then...

  • Trying to stay positive

    31 March 2011 ( #My Health )

    So its the second day of button holing and i start with a positive attitude.... but it soon goes down hill. I manage to get the first (A) needle in but not sure if exactly the same as last time so I need to make a really good mental note for Saturdays...

  • Pain & more pain ...

    03 April 2011 ( #My Health )

    So I saw the surgeon on Friday and he thinks the narrowing is definatley causing the pain when needling so I am going in for plasty, just got to wait for the date to come through. Was very anxious about this but I went on a night out with old work friends...

  • not much to write home about

    12 April 2011 ( #My Health )

    So the last few dialysis sessions haven't been the greatest. Had to keep on using the smaller (15g) needles and the pain has been terrible. Managed to get 5 sessions done for the V site button hole but failed today through the amount of pain and just...

  • Not Again!

    18 April 2011 ( #My Health )

    Had my appointment through for my op on 20th May so time to prepare myself. lol. Started to feel bit weak yesterday and just thought i had some fluid on but it got worse overnight so went on dialysis early this morning. Felt quite unwell on machine, realised...

  • Few days in Hospital

    27 April 2011 ( #My Health )

    Started to feel unwell last wednesday, bit like a cold so just thought could get away with bed rest. Spent Thursday, Friday and Saturday in bed but in the middle of the Saturday night it was time to call an ambulance and get me in on the renal ward, unfortunatley...

  • Get away!

    10 May 2011 ( #My Health )

    After my little stint in hospital we decided it was time to go see the in laws as we had to cancel the last visit due to me being unwell. I decided to dialyse two days together to get a good dialysis and so we could travel there on a Thursday rather than...

  • Here's to the Future??????

    21 May 2011 ( #My Health )

    So in June me and Chris will be attending the first UK patient -family conference to discuss aHUS ( thats the disease that caused my kidney failure). It mentioned that there would be a discussion about Eculizumab ( trade name Soliris). This a new breakthrough...

  • aHUS Conference Newcastle 2011

    15 June 2011 ( #random )

    Well im finally back from the long awaited conference on aHUS and it was really interesting and even come back with some positive news. The drug Ecluziumab i have spokedn about before was mentioned in detail but rather than try and explain it all it basically...

  • Its been a While

    22 November 2011 ( #My Health )

    Well its been a while since i last updated my blog but i tend not to write blogs when im not thinking too positively. There is an e-petition for getting the funding for the drug i need in order to have a transplant and so far we have reached over 1000...

  • Pleurisy & Parliament

    26 January 2012 ( #My Health )

    Sorry I have not wrote for a while but quite a bit has been going on. Had a lovely Christmas but did end up in hospital for a day with suspected pneumonia and pleurisy. Managed to be discharged two days before Christmas on antibiotics and bed rest. Found...

  • Where Are We At?

    14 April 2012 ( #My Health )

    The last time I wrote my blog I had sent in an appeal to the DWP as they wanted me to get back into work as yet they are still making a decision so I am still nervous about this and can't wait for it to get sorted. My medication has finally come to an...

  • Refreshed

    21 June 2012 ( #My Health )

    Had a great time in Crete and could definitely have stayed for a lot longer but isn't that always the way with holidays. The weather was perfect , the food was great and Jasmine loved her first time abroad. As usual the dialysis centre was perfect with...

  • Won't be long (hopefully)

    01 September 2012 ( #My Health )

    Since I last wrote a few different things have been going on in my life. Firstly and most importantly we are still waiting for the decision on Eculizumab ( the drug I need to have a transplant), we were hoping to get this before parliament went to summer...

  • All is well

    04 August 2013 ( #My Health )

    Well the date finally arrived for my fistulagram and I was a little nervous to say the least even though I have had the procedure several times before. BP was extremely high and it didn't help matters that when I got to theatre my usual surgeon was not...

  • Best news in the world, probably?

    07 November 2013 ( #My Health )

    As usual I have left it a while since my last blog. Anyway lets start with the news we have waited so long for. On the 11th September 2013 we finally got the news that patients who are on dialysis and are fit enough can have the drug Eculizumab funded......

  • Bring on 2014!

    05 January 2014 ( #My Health )

    Well another year has passed and I'm still here! Managed to visit in the In laws for a couple of days, had a quiet Christmas and even managed a couple of days away for the New Year. One of the things I do not look forward too is New Years eve so this...

  • 9 Weeks post transplant

    08 August 2014 ( #My Health )

    It's now 9 weeks post transplant and I think I have felt every emotion possible. Out of these 9 weeks I have spent more time in hospital than out and I just feel so frustrated. I went to normal clinic to see the consultant and wasn't feeling fantastic...

  • 4 month mark

    08 August 2014 ( #My Health )

    Hi So the 4 month mark has been and gone and my oh my can I see a change. I have gone from attending clinic twice a week to once a week and my Eculizumab is fortnightly. Eventually If I remain stable my clinic appointments will be even less often, the...

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Présentation

  • : livelifelisa
  • : I decided to write a blog about my life on dialysis. Originally there was no option of a transplant due to a rare genetic disease but all this changed. I want people to try and understand what myself and my family go through, not just the bad times but the good as well. Hope you enjoy my story!!
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