Month: Jul 2015

Waiting for that call

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Anyone else wanted something so much that they’ve prayed for something bad to happen to somebody else…? Because that’s what it’s like when you’re on the Transplant List. You say goodnight, check your phone volume is set to loud and then wish for some kind soul with the same tissue type as you to pass away so you can live again. It’s not nice and I’m not proud but when you’re life is on hold that’s just the way it is.

I’ve been on ‘The List’ for eight months now and my phone has been strapped to me the whole time. On one particular day it rang with a ‘no caller ID’ when I was at work and unprepared. I answered and was told it was the Transplant Team who were calling because they wanted me to be back up to a transplant that was taking place this evening. I dashed into the nearest meeting room and called my husband; on the fourth attempt he answered and immediately made his way to me. He was in Cardiff, I was in Oxford but he needed to be there, I couldn’t do this alone. I rang my family and explained the situation and off I went.

I got to the ward and was ushered into what looked like a cupboard, my waiting room for the next 12 hours. My husband hadn’t arrived yet but I was already out of my work gear and in “this season’s” hospital gown and was being whisked down for an X-ray of my chest, just the start of many tests to come. Although just a ‘back up’ you’re prepped as if you are going down for surgery. I went through all the necessary tests and spoke to the surgeons and anaesthetist. The whole time I reminded myself that this wasn’t my turn and that I was only there just in case there was a problem with the Primary Recipient. It didn’t stop me wishing the organs would come my way though!

The organs were small and the donor had an infection when they passed away. I was asked ‘should the organs come my way would I still accept them?’ They already had the antibiotics to give at the point of plumbing.  It was a good question, I didn’t know. I have trusted the NHS with my health since being diagnosed as Type 1 Diabetic twenty years ago; I didn’t have any reason to question their ability to keep me safe but when it’s your chance at living a normal life again then perfection is what you want to hear not ‘possible risk’.

The organs arrived in a white cool box, brought in by a paramedic and were handed over with great care. To be honest to the normal eye he looked like a pizza delivery man handing over a special order but not to me. I was waiting for this amazing gift to be on the premises, increasing my chances and making the time until I would know my fate arrive sooner. The ‘cupboard’ was starting to feel cramped but we managed to kill time with countless episodes of the X-Factor auditions on YouTube and the time flew by. Midnight arrived and the activity on the ward outside my door increased and my door was pulled shut as they took the Primary down for their life changing surgery. After ten minutes the nurse asked me to stay until the procedure was underway. ‘Of course’ I replied. There was still a chance the organs could come my way, I wasn’t going anywhere, we settled back down to Simon Cowell and a dancing dog.

Another half an hour passed and I was asked by the surgeons to stay a bit longer. What does that mean? Was there a problem? Maybe the organs don’t fit????? It’s really hard to keep yourself from overthinking but by this point I was too tired. At four o’clock I was told that I was no longer needed and that I could go home. Just like that the nurse removed my cannula and told me I could leave. I’m not sure what I was expecting but it wasn’t this. A thank you maybe or a leaflet to take away telling me how I was going to process what had just gone on and the number of someone to call when I wake the following morning and can’t stop crying… We headed to the nearest 24hr McDonalds before the journey home.

The following morning was the hardest for me, I needed to dialyse; the harshest reminder of what I had been through the night before. My Dad came for dinner and with a hug that normally takes away the pain I realised that only time would make me feel better. Who was I kidding that I was ok to be a ‘Back up Recipient’. I wasn’t ok with this, I was doing it, I AM doing it because I am desperate.

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I was on BBC Radio 4, ‘You and Yours’ earlier today (Click here to hear the programme) talking about a new report from the NHS Blood and Transplant Service finding that the number of people donating organs in the UK has fallen for the first time in a decade. Is the ‘opt out’ system Wales have adopted the way to go? Is it morally correct? I’m not sure what your thoughts are but either way please have the conversation with your family as soon as you can. Don’t leave your loved ones with the hard decision to make at a time that will be devastating to them. I for one would like to thank those who are on the register because for people like me it gives me hope. Hope that I and others like me will, one day enjoy life again.

You can register your details at the Organ Donation website https://www.organdonation.nhs.uk/register-to-donate/register-your-details/

Not everyday is a good day

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Why is it when you have things to do it all goes wrong? This morning has been tough, even for me. I surprise myself sometimes with how I deal with what I have to go through, today I was being tested, but I don’t like to lose.

After sleeping pretty much most of the day yesterday I woke up this morning to the sound of my alarm expecting to feel refreshed, wishful thinking! Dazed and feeling exhausted, I mean proper exhausted, the kind when breathing even feels difficult. I know why it is, my haemoglobin is low again but this morning I can do without it. I must get our cat Frank to the vet, then I can plug myself in. It’s not my normal way to plan things; I normally plan my day so that I do dialysis first then if I have the energy I’ll do what I need to do in the afternoon. This way there is no pressure on me. If it takes me an hour to connect myself to the machine then fine. But not today, I needed to be on and off my machine in time to pick Frank up. There’s the problem, right there, me. I’ve set myself up to fail right from the start.

After dragging myself out of bed, having a quick shower which I struggle to breathe my way through (laboured breathing can be a sign of anaemia, low iron stores and low haemoglobin, a symptom of kidney failure. Click here to read more on Renal Anaemia) I throw on some clothes and make my way past my dialysis room to grab the cat. Frank gets to the vets on time, I make it back home in one piece and start setting up my machine. Plenty of time to clean my blood, remove excess fluid and catch forty winks before collecting Frank.

I lined my machine, laid out my needles and flushed everything through with saline, my usual routine, nothing different from what I had done two days before. I checked my weight and my blood pressure, programmed the machine and then sat down ready to start needling.  Dave (my fistula) is cleaned and using my fingers I feel for the pulse, the ‘thrill’. It’s buzzing nicely and I line up my needle ready to pop it in. It slides in but I know I haven’t hit the spot as it doesn’t feel easy, it feels resistant so I pull out and try again. I check my angle of the needle, reposition my arm and try again and again and Again. After five minutes I clean my fistula, reload my needle with saline and start over. The last time I dialysed it went in first time, I try to remember my position then, the angle I used but everything appears to be the same. It’s obviously not because another fifteen minutes has passed and I’m still no further forward. In fact I feel I’ve taken ten steps backwards.

I take a break, walk around the kitchen and have a little talk with Dave. ‘Come on, be nice to me please’ I plead with my arm. If anyone was to hear me they’d think I had gone crazy and had someone held hostage under my jumper. I do a few stretches and sit back down. I clean my arm and try a new needle, this usually works. Like muscle memory I think the needles remember! Nope not this time, this time I tried everything I had been taught, the frustration was building with every attempt and I could feel myself getting upset. My arm, which usually doesn’t hurt was starting to hurt, telling me to stop and normally when you get tired, when things hurt you stop, you do something else. But with dialysis you can’t really do that, it needs to be done. Thoughts of what I will need to do if I can’t get my needle in creep in and I resist the temptation to be drawn into putting Plan B into action.

I wouldn’t say I’m stubborn but I am determined and very proud. There was no way I was going to let something that I’ve done almost every other day for the past seven months get the better of me. ‘I can do this’ I tell myself, ‘stop putting so much pressure on yourself, cut yourself some slack’. I reach for the sweets. Being diabetic I have an emergency stash, today was an emergency of a different nature. One rhubarb custard down with a little shuffle of my cushion on which my arm is rested and I go again. Effortlessly the needle slides in, laughing at me as it took its place perfectly in my fistula. The blood released immediately and the colour of my blood filled the long plastic tube attached to the needle. Only forty-five minutes late!!! The relief arrives and Plan B is safely put back in its box.

One down, one to go. For haemodialysis you need to insert two needles, one to take the blood out (done) and one to put the blood back in once it’s been through the machine. I wasn’t in the clear just yet. Clean, position, feel the thrill, line up, insert, Bobs your uncle. The second needle was simple, the way the first was meant to go. The next four hours flew past with no problems, what was all the drama about?!? Now I just need to remember how I did it for next time, wish me luck…

Sun’s out, Dave’s out!

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Temperatures are due to soar this week; a week long heat wave and with my love and longing for the sunshine this sounds like bliss but, I have ‘Dave’ to consider. Dave is my fistula, the best access for haemodialysis, my vein and artery sewn together to create a blood cleaning superhighway. He performs magic 3/4 times a week and keeps me feeling well yet I am still embarrassed by the way he looks. I chose to have him, was I regretting it?

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Meet Dave. My Fistula & buttonholes; my access for my needles to be able to clean my blood.

Two little holes on what looks like a raised, pulsing vein yet I’m more accepting of the future scar I will wear once I’ve had my transplant, a long obvious scar from my chest bone down to under my belly button. People just don’t get Dave, they are not used to seeing such wonderment (that’s how I prefer to describe it rather than disfigurement) on a 33yr old woman, especially when ‘you look so well…’.

So, today is a day off. A day off from dialysis, a rest day, a day to enjoy life and forget I’m a little bit broken at the moment. But it’s not really, not mentally, who am I kidding? Today is a day of dealing with one of the things kidney failure brings; dealing with the questioning glances as I try to blank out the fact Dave is standing proud. My mum tries to tell me ‘you can hardly notice it now’, I know her words mean well and are because she knows it bothers me, some reassurance, but I’m not blind. I notice as I walk into my local supermarket women acknowledging the fact I’ve made an effort with my outfit today, a green linen skirt and a navy vest top but her eyes are transfixed at my left arm as we pass one another in the crisps aisle. Vest tops, such a versatile item of clothing but at the same time exposes so much. A bingo wings worst nightmare and now I was finding out it was Daves worst nightmare too!

It’s hot out, what do I do; admit defeat and wear a 3/4 length sleeved top all summer or embrace Dave’s individuality and praise those whom bother to delicately enquire the ‘wonderment’??

Today’s a ‘sod it’ day. People stare because they don’t understand, they have enquiring minds but are not brave enough to enquire. So, with that in mind I’m off to wave Dave around town and should someone ask me about him I’ll tell them ‘it’s my blood cleaning superhighway’. If they don’t stare at me more after that then I will be worried!!!

Ps. Enjoy the sun and remember, don’t lock dogs in cars (or anyone/anything for that matter). It’s too hot!

For more info on how Dave was made follow this link:

Click to access 5659Pfistula.pdf