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!!
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...
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...
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...
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...
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...
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...
Well I have finally got both button hole needles in and have also increased my session to 5 times a week. Can't say i actually feel any better for it at the moment but i am sure my blood results will. Its less than one week now till we go away to Bournemouth...
It has been a while since I last blogged but quite a lot has been going on and it has been difficult finding the time plus because I have felt under so much stress the blog probably would have been so negative anyway. Firstly my role as a trustee for...
Had op a couple of weeks ago now and it really did hurt this time. I had to have 5 times the normal amount of local anasthetic as the pain was too much and I could still feel it. Didn't manage to stretch the narrowing as much as the surgeon wanted but...
The past few weeks have been quite agonising as my fistula has hurt like hell when needling. The dopla scan came back clear which was a huge relief but then I got a letter from the hospital telling me I had got to go in for a fistulogram/plasty. This...
Hi.. So tomorrow is finally D Day and i am having an operation on my fistula. The last one was cancelled so all being well this will go ahead. The nerves have kicked in now and just hoping all goes well. If the operation works then im hoping to not get...
I was still ill this morning so chris had to get Jaz ready for nursery and then i just drove there and he took her in. Spent the day relaxing then went on dialysis this evening. Needles painful as usual so I had to use the smaller 15g ones but still managed...
Well its 2am and I cannot sleep even though I am so exhausted! Many people reading this can relate to this feeling but the majority of Kidney patients will probably understand a little better about the next bit. Every now and again I get what is known...
Well due to a family berevament we had to go away for a couple of days but struggled to get fluid off before we went away so wasn't sure if i would manage to go the extra day without dialysis. As it stood i didnt manage it and had to come back a day early,...
I have been on Haemo dialysis since 2004 when i started with acute renal failure due to aHUS. I had an unsuccesful transplant in 2006 due to the aHUS being recurrent and in effect 'killing' the kidney in a matter of weeks and therefore have not been put...
Dialysed on Thursday and boy did i need a good session after the terrible previous one. I had extra fluid on and just felt 'crap' for lack of a better word. So this session i managed the bigger needles, got my normal pump speed, increased dialysate flow...
I can't believe it was September when I last wrote, shows how quickly time flies and so where do I start. Jasmine started school and absolutely loves it. She even achieved the headmasters gold star award in her school in the first term, we are so proud...
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...
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...
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...
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...
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...
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...
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...
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...
