So when you go to clinic and the doctor says we are running out of options you know it’s not a good a sign. This was back in June. My dialysis access was not improving with all of the procedures and it was also becoming dangerous to the rest of my arm and hand.
Live donation was mentioned again. As regular readers of my blog know I have always been against this. I don’t want someone I love to go through an operation they don’t need and all the risks that come with it.
However when access became such a huge issue I agreed that my Mum could go through the testing to see if she would be suitable to be my donor. This was a big decision for me but Mum didn’t hesitate and jumped at the chance.
In August the worst happened and my graft clotted off, I had a neckline fitted and Mum’s tests were rushed through.
We had to cancel our holiday and dialysing at home was no longer an option. Things seemed to be going from bad to worse. My neckline didn’t seem to want to play ball either and has had to be manipulated back into place twice since I had it put in.
All the while each of Mum’s tests came back with good results. Part of me wanted them to say she couldn’t do it so it got her off the hook, part of me was thinking about all the things I may be able to do again if things were to go ahead. I also thought about the effect of the operation on my Dad and A but also conflicting with the fact that my parents would also have more of a life if things were sucessful.
4 months of testing and here we are. Everything is a go. My Mum is giving me a kidney. I still can’t believe I am writing that let alone that it is going to happen…. this month!
Lots of thoughts going on at the minute, worry for my Mum mainly. How do you thank someone for being so selfless and giving me life… for a second time! She is my Mum, best friend and now my hero. I intend to do everything I can to look after my new little kidney bean and I am looking forward to many happier times ahead all thanks to my Mum. Thank you will never be enough.
I’m not going to reveal the actual date of our operations but A or I will keep you up to date when we can on both Mum and I.
So things went royally pear shaped. I was doing so well needling myself with very few problems, I had managed nearly a whole month at home.
Then last Thursday I tried to needle myself, my lovely nurse who will be known as M just happened to be there dropping supplies off. I kept getting flashback on the needles so I knew I was in the right place but the blood was black. It had gone, clotted off. I racked my brains to think if I had done anything different the day before, banged my arm or done any lifting. I hadn’t, sometimes it just happens – so frustrating!
I went to A & E. Saw various doctors, had a scan to confirm that it had clotted off and stopped working. They tried to get blood off me from various places and I ended up with a cannula in my foot.
To cut a very long story short. My graft is beyond repair. It has had so much work on it that it can no longer be fixed. So I have myself a very attractive new accessory… picture not for the faint hearted.
Last time I had a neckline inserted I was asleep, I had eaten this day so they couldn’t even sedate me. This has been the most horrendous procedure I have ever had done (even after the angiojet to unblock the clot last time). Not ashamed to say I cried… I like to think I am brave but I totally wasn’t. It didn’t help that they inserted one neckline and it was too long so they had to pull that out and insert another one! When they did this they trapped some air and my sats dropped (level of oxygen in my blood) and I felt like I couldn’t breathe.
I was put on oxygen and had to be observed for 5 hours. Once it was all over I almost instantly went to dialysis. Amazingly I was let out the same night and didn’t get home until midnight.
The pain over the next few days wws excrutiating. Paracetamol just wouldn’t touch it. I couldn’t get comfy, couldn’t lay down and couldn’t sleep. I stayed at my parents house and spent 2 nights on their reclining sofa. The pain is starting to ease and I can lay almost flat now. I’m adjusting to life with a neckline now – it feels like a lot of my independence has been taken away though. I can’t wash my own hair as I can’t get it wet. I can have a shower round it and a shallow bath and swimming is a no no.
I am currently training alongside Mum so I will be able to dialyse at home again, the procedure compared to the graft is completely different so its hard to unlearn that and relearn this. But we will get there.
Thanks to nuse M, Aidan and the olds as always for their invaluable support. Things may have gone pear shaped but I know I am a lucky girl.
”You will lose friends, you will gain friends, but what matters is that you never lose yourself. Our limits do not define us, but they are a part of us and we must recognize not just our own but the limits of others as well.”
This is taken from a really interesting article which can be found here, it really resonates with me :http://themighty.com/2016/08/responding-to-friends-who-dont-understand-your-health-limits/
Although dialysis is going well at the minute I am finding my energy levels are absolutely shot and my physical ability due to pain in my legs is restricting me. This doesn’t mean I am going to sit in the house and not do anything, if you are friends with me on Facebook you will see I still go out and about.
A and I have become very good at adapting days out, ocassionally I will use my chair or we will go somewhere that doesn’t involve much walking (usually walking from bench to bench). If I’m not well enough to enjoy a day out but want to get out the house, A will take me for a drive. What Facebook doesn’t show is the recovery, how long it takes me to get back on track if I’ve used all my energy on a day out.
I refuse to sit about and let kidney failure define me but I do need to recognise I have limits, but I can adapt the way I do things.
I really appreciate the friends that still visit and still invite me. It means the world. Those that don’t, it’s their loss.
I will not lose myself.
Yes. I am a pain in the bum… but I am actually having pain in my bum, well not my bum but my hips. It started off over a month ago and came on when I had been walking half an hour. Now I am struggling to walk anywhere without pain. I get down on the floor to play with Buddy and can hardly get up, stairs are a nightmare and I’m even finding it hard to get comfortable in bed at night.
I’ve told the nurses and they have mentioned that it may be the start of renal bone disease. I had blood taken on Wednesday to check the levels of my Para-thyroid hormone, which controls calcium in the blood and will also indicate if this is the problem. Until then I’m popping paracetamol (although its not touching the pain really). If the above is the issue there are some tablets I can take to try and help.
This brings it home that the kidneys do a lot more than just filter blood. They regulate so much. I’m not really used to being in almost constant pain, theres been pain after operations and obviously brief pain when putting my needles in, but this is something new to me and something I could do without as its stopping me doing things. Hopefully it will get sorted.
The Transplant Games in Liverpool were amazing. Tiring but amazing. I was so proud to walk with the team during the opening ceremony, it was a walk along the waterfront and then a gathering in the exhibition centre on the docks. The walk wasn’t that long but to me it felt like a marathon and by the end I was in quite a bit of pain and had zero energy but it was so worth it.
Friday was my first event. I dialysed in the morning at The Royal as there was some concern over one of my needles being too far out during dialysis, this took a while to rectify and I was late to registration of my event, thankfully my Dad and A went down to the bowling alley and registered for me and Mum and I rushed straight from the hospital. I lost my first game and won the second (including 2 strikes). I went home for a sleep and then travelled back to Liverpool for the social Loud Shirt event.
Saturday was busy as I attended my Goddaughters 1st birthday party and saw my nephew who was celebrating his 2nd birthday and then travelled back to Liverpool for the donor run. I had the privilege of being asked to start the donor run and read a poem to the hundred of people on the start line. I was super nervous but tried to read it slowly. I was originally meant to walk the donor run (3k) but I am just not well enough, dialysis drains every bit of energy from me and I am also suffering extreme pain in my legs. I was going to wait at the finish for my olds and A but Mum convinced me to stop being vain and do it in my wheelchair. Very proud of the medal I got for completing it even if I didn’t walk it. After that we had a team meal together in a local pub.
Sunday was track day and I took part in another event – the ball throw. I came 4th and managed to throw over 14metres, which wasn’t bad with no practice. We stayed at the track for a while watching various events, the sun was shining and the little kids races were totally inspirational. The general atmosphere and camaraderie is very special. Its a great advert for the good that organ donation can do and a great way for participants to honour their donors.
Sunday was the icing on the cake. The Gala dinner. One of our team mates Chantel did a stunning performance of wind beneath your wings and search for the hero inside yourself. It was goosebumpy good and we were all up dancing. The night then continued with a Beatles tribute band the Cheatles and then a DJ. There were many dance offs!
It had been a long 4 days but so worth the level of tired I am still feeling now. Will leave you some photos…
Tomorrow the British Transplant Games begins in our hometown of Liverpool! How exciting! Over 900 people who have had live saving or life changing transplants take part in over 25 different sports. The Liverpool team itself has over 35 competitors.
I’m disappointed I can’t take part in as many things as I would like to but I will be doing the 10pin bowling on Friday and possibly the ball throw on Sunday.
I have also had the honour of being asked to speak before people take part in the donor run on Saturday, what a privilege. I was originally signed up for the 3k donor run but I think I was being optimistic, I’m just not well enough at the minute, but at least if I speak I will feel like I am doing my bit.
The games is an amazing chance for people to honour their donors and the amazing gift of life we have all received. I’m looking forward to catching up with old friends and making new ones, the social events over the weekend are always great and a personal highlight!
If you are around Liverpool the next few days please come and show your support, theres the opening ceremony in and around the Albert Dock and exhibiton centre, track and field at Wavertree amongst other things.
The games bring great economic growth to the home city but it is also used as an opportunity to encourage people to sign up to the Organ Donor Register. If you haven’t thought about it before please consider it, the aim is to get 10,000 new names on that register, you could be one of them! Don’t forget to have that #donationconversation and share your wishes with your loved ones.
Everything seemed to be against me. I’m sick and tired of feeling sick and tired but I refuse to sit around and feel sorry for myself. The past few weeks there have been tears, I am usually pretty good at putting my brave face on but I’m so frustrated recently that it all had to come out eventually. And it did.
Last Friday I was told that if I can’t master my needles again they would need to put a neckline in. Now I hate necklines but it wouldn’t have been such a big deal had it not been for the fact I’m going on holiday in September. You can’t get a neckline wet (even in the shower) and for me holidays are all about swimming in the pool and sea… especially when our hotel has a waterpark in it!
Anyway fast forward a few days and I’ve managed 4 days in a row at home, this is the most I’ve managed in a good few months! The threat of a neckline must have worked wonders!
The nurses have marked me up with a surgical pen so I know what angle to put my needles at and that seems to be helping (even if I do look rediculous with pen on my arm). Fingers crossed things continue and I can remain at home and steer clear of that neckline!
Few pics of recent days… the kids came round while I was dialysing and decided they would help!