Month: Aug 2015

Back up call No.2

8 Comments

Having rolled over and drifted off back to sleep after Gary (my better half) had got up for work I could hear the house phone ringing. The only people who ring the house phone these days are my step son and British Gas and it was too early for it to be any of them, it could only be the Transplant Team. Bolt upright in bed I heard the phone being answered and then the words ‘It’s the Transplant Coordinator’ as Gary passed the phone to me. In those few seconds between him saying that and handing me the phone I prayed (I’m not sure who to) that this would be ‘my call’.

The polite lady on the end of the phone almost whispering as she introduced herself (I’m not sure why as I was wide awake). ‘We’d like to call you in as a back up’… Not the words I wanted to hear but trying to stay positive I said ‘of course’ and waited for the call back to see if I needed to dialyse before heading to the hospital. Then before hanging up she made very clear that once I’d had some breakfast I was then nil by mouth. Lovely – A small price to pay for what could be a life changer!

I did have to dialyse first so for the first time at this small hour (5:30am), still in my pyjamas and my hair looking a bit, no very crazy I started lining my machine. I had the strangest feeling as I went through the motions; What if this would be the last time that I pierced the bag of saline? Would this be my last time sticking in my needles?  I tried hard to remember I was only back up and that any excitement of how wonderful a transplant would be needed to be put aside. I had been through this once before and ‘once bitten twice shy’.

Three hours of dialysis felt like a lifetime but it gave me enough time to tell those closest to me, those that wouldn’t forgive me if I had kept this progression to myself, those that go through the same heartache as me when things don’t my way, those patiently waiting for the news that I’ve been given a second life and equally disappointed when it hasn’t. A select handful would now sit eagerly checking their phone for updates, distracted and hopeful, just like me. The next few hours weren’t easy for any of us.

With my overnight bags already packed (I keep one permanently in both of our cars, a duplicate of everything in each) it was just me I needed to get ready. A quick shower, comfy clothes and we were off. Dry shampoo rocks!!

The journey to the hospital was a weird one. For call No.1 I was overwhelmed with what would happen but this time I knew what was coming. I was prepared for the long wait, the ebb and flow of emotions and the draining feeling as you try and control your thoughts from wondering ‘what if’. But this was different, this time as we made our way there we talked about fate and how we both believe that it is out of our hands and that it is circumstances like this where it is out of our hands. My mind wandered; What if it was my turn and I didn’t wake up? How will it feel to be cut open? How does Gary feel? Why am I putting everyone through this? What did I do wrong? Why don’t I have a set of pink flashing ‘policeman style’ lights on my car so people would move out of the way??!?? So many questions that I put off answering, after all I was just a back up.

Getting to the ward was easy, parking however was not. I jumped out of the car and left Gary to search for another twenty minutes to find a spot the other side of the hospital. A lovely lady greeted me and already knew my name and showed me to room five. This time we were not in the cupboard, I had my own bed, TV and en suite. Was this a good sign? Was this fate? Who cares, it felt palatial compared to the room I had for my first call and therefore either way it was going to be a good day.

image

Cannula, bloods then an X-Ray of my chest, and a sliding scale in place (I’ll explain later).

  • Cannula inserted to retrieve bloods but also ready for my sliding scale
  • Bloods to double check my tissue type hasn’t changed and tests for other stuff – people often think transplant is about blood type but the main factor is tissue type (check out more here…it’d take me too long to explain)
  • X-Ray to check for any signs of chest infection and other nasties
  • …and finally being hooked up to a sliding scale. Being diabetic and being nil by mouth it’s a way of giving me glucose and insulin slowly so that my blood sugars stay stable. Well, that’s the theory anyway…

All this took about two hours. This time however, no ECG (trace of my heart) as my last one wasn’t long ago and I hadn’t had any problems up to this point and no pregnancy test, maybe I didn’t look pregnant this time?!?

The downside of being ‘back up’ is that you’re not priority, and quite rightly so. The ‘Primary’ is the focus of everyone’s attention, making sure they are ready and prepped so to give the donated organs the best chance of success in giving them their new life. On this occasion the transplant class system was obvious. Unintentional I’m sure but very obvious. Understaffed and using agency staff was the excuse but the reality left my blood sugar to drop low four times, no immediate concern for alarms ringing and regular use of the words ‘just back up’. I felt like an unwanted visitor, being given attention but reluctantly. I toiled with leaving but I’m not a quitter, but sometimes I wish I was, it would be easier for me and for those closest to me.

Feeling like ‘spare parts’ we settled into the room and made the most of our time together. Crosswords helped pass the time and we talked about our travel plans and all the wonderful things we’ll do post transplant. Please note: those things do not include bungee jumping or the scariest roller-coaster ride on the edge of a high-rise hotel (don’t tell Gary!), I’m having a kidney & pancreas transplant after all, not a brain transplant! It was nice to talk about the future, it’s a much nicer place, it’s filled with colour and energy. It’s not full of hospital appointments, sickness, exhaustion and restrictions. It’s about life and to say I’m/we’re excited about being free and living again is an understatement!

With an appreciated flying visit from my Consultant who kindly reminded me I was unlikely to receive the organs (in case I had forgotten), visits from nurses and other medical staff and updates to the select few the time slowly ticked by. Just like last time I met the anaesthetist and surgeons all asking the same questions, going through the same information being reassuringly thorough. Even with these distractions time ticked by slowly. Why is it when you’re excited about something time stands still? Tick tock…

The nurses were reluctant to tell us if the organs had arrived and we could hear nothing from my room but by 12pm we were told the Primary was going down to theatre, so snuggling into Hubby’s hoodie I tried to close my eyes whilst he snoozed in the chair next to me. I know people who have been through this alone, I’m not sure I could. Having someone there for you when life throws you a challenge is invaluable and I know my family appreciate him as much as I do. I mean, he didn’t sign up for this… We used to go out every weekend, shopped until we dropped, went to festivals and enjoyed champagne often. Now I’m lucky if I make it around Waitrose (other shopping facilities are available although I get free tea when shopping at Waitrose) without getting too tired and complaining that it’s too cold. I often feel guilty but I know he’d kill me if he heard me say those words out loud. In the words of Judie Tzuke (One Minute) and the song I walked up the aisle to;

‘If I had so little of my time
There’s nothing I’d want more
Than to wait outside your door in case
I found a minute more’ 

At 3am we were told that we could go home. I was prepared for the lack of tact shown in delivering the verdict so wasn’t too shocked to be told ‘I could go home now’ with not so much as a ‘thank you for your time’. Fate had dealt it’s hand for me and again it wasn’t my time, it had given new life to someone like me eagerly awaiting their freedom. And that kind of fate I can deal with, taking twenty minutes to get to the nearest 24hr McDonalds I can’t!!

After a good nights sleep and plenty of talk including a long chat with my Transplant Coordinator, my Mum & Dad and Gary I’ve decided to come off the back up list. The stats show that I’ve been on the Transplant List 312 days and that’s about the average amount for getting the organs I need. The chance of me getting ‘back up’ organs are 10-15%. Whilst every shot at goal is an opportunity it’s emotional and now as time goes on its becoming very tiring for me (and my family). The highs and lows are extreme and my chance of receiving organs from being Primary grows exponentially with every passing day. Both my Consultant and Transplant Coordinator seemed disappointed at my decision but my family seemed more relieved.

What would you do if you were in my shoes?

I love the fact healthy organs won’t go to waste but I feel that someone else can take the chance now; Primary is the way forward for me.

Maybe next time, my first Primary call will be my time, if fate allows.

Welcome to my ‘dark side’

12 Comments

It’s been a few weeks since I last wrote and it has been a deliberate decision. I’ve had a difficult time lately and knowing how to explain how I feel without sounding melodramatic can be hard. After a weeks holiday (well my husband took a week off work and we had some lovely day trips) and with some time to think things over, I’m ready. Please don’t be mistaken that I’m looking for sympathy, just understanding and for those reading this that are going through kidney failure or those about to or those that have already gone through it, I’m sure you will relate to what I’m about to write.

Life is good, in fact it’s great. Why did I never acknowledge that before? Being able to get out of bed and plough through a working day then have an evening of indulging in whatever takes your fancy and then doing it all over again without a care in the world, subconciously pushing your body to extremes over and over again, instant recovery and joy…oh I know why, because I haven’t ever been able to do that. And, it’s only now after twenty two years of diabetes,  nine months on dialysis and ten months on the Transplant List that it hits me. I haven’t lived, not properly and just the thought of it fills me with sadness, anger, jealousy and resentment. For those that know me will know that negativity isn’t something that I do, but deep down it’s always been there. Buried underneath my ‘can do’ attitude, my positive facade and my will to succeed is a deep disappointment with the hand I’ve been played.  A glimpse of a beautiful sunset, family time or the first blooms on a trying plant help to suppress my dark side, to keep it at bay but at some point these feelings need to be addressed. Mine have surfaced and need to be dealt with, be accepted as ok, so here I am about to explain how it feels, well try to anyway…

Social media is a wonderful thing and has kept me entertained for many hours; hilarious clips of pranks, talking dogs or incredibly cute pandas who actually look like humans in fluffy suits are all a pleasure to watch when they appear on your news feed posted by a friend (normally my husband) however it is also a massive billboard for all those things you’re missing out on:

Banging nights out – nope, they are long gone, involves too much fluid and I’m not sure I can stay awake that late. Plus doing dialysis with a hangover is awful. I tried it once, not good, won’t be doing that again in a hurry.

Globetrotting – being on dialysis doesn’t mean I can’t travel, I can but I have to be suspended from the Transplant List and that’s not something I’m prepared to do now that I’m ten months in. Even if I did, I’m not sure I’d have the energy to fully enjoy myself.

Children – right now all my friends are having babies and while I have never been lucky enough, being on dialysis, diabetic and with a transplant ahead of me, as heartbreaking as it is, it’s not a risk we’re prepared to take which might mean never and for me that’s a dream shattered. Instead I’ll just get more cats, they can entertain themselves whilst I’m plugged in and they make less noise, maybe it’s a blessing?!?

Dieting –  I don’t have time for that nor the inclination to be miserable all the time. Healthy chocolate alternatives and milkshakes full of fairy dust aren’t for me. Especially when it’s not even on Doctors orders. Grabbing something that I can eat one handed, won’t add on extra fluid or raise my potassium levels whilst increasing the amount of iron I have stored and that is a slow releasing carbohydrate is enough for me to deal with. Eat less, exercise more and be happy doing it, simples!

All in all, people’s lives are thrust in front of us on a daily basis: magazines, TV, post and the web. Beautiful images, celebrations and words of inspiration copied and pasted or ‘shared’. I love seeing how my friends and family are doing, joyous milestones in their lives, all of which my ‘dark side’ doesn’t want to see. It can’t bear the freedom others have, openly and honestly jealous. To ‘It’ it’s abnormal, fiction, a far off dream. A dream that can’t be reached, not now, maybe never. It also gets very upset that some choose to pull the cloud of sadness upon themselves, can’t take responsibility for their own lives and most of all those that are bored. Not even I can get bored sitting plugged into a machine for four hours three times a week.

But this is not me, this is the inner me talking, the me I know needs to be silenced. I know that I won’t see the world in this light for long; some point in the near future the dark haze will be lifted and I will be one of those taking a selfie on the top of a mountain with a glass of vino in hand. It won’t be long and I’ll be doing the things that every thirty three year old woman should be doing. For now be understanding as I’m going to need to let these emotions out now I know they are there, an honest part of me, a part I can no longer hide. Please give me hugs when you see my bottom lip quiver or hold out your hand when I stumble and for those going through the same, know that it’s ok to feel this way.

My future however will be awesome, beware and remember, as I do, life is great!