*****NOTE there are NO gruesome pictures in this post!!!*****
After a fun filled half term evening treat of bowling with Gary (my Hubby) and Kiaya (my Niece), where for the first time my body was able to keep up with my steely determination. We high-fived each other, collected our (I mean Kiaya’s) Easter egg winnings and left feeling victorious. Rewarding ourselves on the way home we opted for a curry from the local Indian – an even worse decision than choosing a ‘small’ ball on my first bowl where my fingers almost got stuck and visions of me making my way down the alley with it flashed before my eyes! An hour after eating and I was regretting our choice of celebratory meal.
To begin with I felt I had just pulled a muscle in my stomach but as time went on the pain increased. The noises in my stomach became audible to what seemed the whole neighbourhood and I realised then something was wrong. Everyone else seemed fine; Kiaya was sound asleep and Gary only struggle was to ignore the loud monster inside me. They were ok, we’d eaten the same…right??? NO. The paranoid transplantee in me decided to opt for a vegetable curry with a dry chicken dish so I could see the chicken was fully cooked before eating it. ERROR!!! It was the only thing that it could have been, the chicken was the culprit. How unfortunate! I felt desperately nauseous and my stomach felt like a washing machine on a spin cycle with my Dads army boots inside. I didn’t feel like we had just had a lovely evening spent with two of the most special people to me. Before I could think anymore about the anti-rejection medication I had taken a few hours before I was bent over the loo saying an unwanted and very elaborate ‘hello’ to what I eaten during the day.
Several nervous trips back and forth to the loo and it dawned on us that this wasn’t going to stop and I was going to need some help. My superman of a husband called 999 and my Dad and both arrived shortly after. My niece still deep in slumber unbeknown to her that ‘Grandad’ would now be taking over babysitting duty whilst we made our way to the hospital. I was strapped into the ambulance and had anti-sickness drugs pushed through a cannula in my good arm. My ‘Dave arm’ (my fistula arm – the access for my dialysis) can’t be used for any cannulation or blood pressure testing so my right arm stepped up and soaked up what I was hoping would be the miracle meds.
The sickness continued as my strained stomach struggled to keep up with my body as it tried to oust the toxins it held inside it. My temperature continued to climb and in turn my blood pressure was through the roof – both showed no sign of lowering. The Doctors were trying to help but didn’t seem to understand the importance of stopping me from being sick. Even with Gary reminding them every time they appeared from behind the curtain in our side room. ‘How were Pam & Ken (my new organs) going to react to this?’ ‘Were they strong enough to cope with my high blood pressure and my continuous heaving?’. After begging for a break they finally gave me an opiate which washed over me like a warm bath. ‘Finally a chance to breathe normally’. It put a stop to the pain, froze it and made me numb. The urge to be sick eased and my eyes closed…whoop whoop! We both slept and waited for what was to come.
My morning medication time slipped by (8am) and there was no way I was able to swallow my usual 8 tablets. I was starting to panic about missing my medication and I didn’t know how this would affect my body. Hours and hours of trying to reduce my heart rate, blood samples collections, full up sick bowls, continuous I-V fluids and more anti-sickness medication and there were still no signs of improvement. I was moved up to a ward and battled on with the evil that had overtaken my insides. The ward Doctor had heard from the Wytham ward in Oxford (where I had my transplant) and they advised them that taking my Tacrolimus (one of my two anti-rejection meds) was of paramount importance for me. ‘Opening up the capsules and pouring the powder under my tongue and allowing it absorb should do the trick’ the nurse told me. So, when there was gap in my wave of sickness I gave it a go…Phew, it worked. Gary left for home late evening and I tried to gain control of my breathing by reminding myself that nothing lasts forever and it would be over soon.
Morning medication
1am arrived and I was taken down for a chest x-ray to rule out any sign of infection. The hospital was silent while I waited outside the Radiology department for my return journey back to the ward – Sat in a Porters chair with an all too familiar feeling of extreme discomfort. Back on the ward and just as I was starting to get comfy I was relocated…again. With every movement, every stomach examination and every spoken sentence my hand reached for the cardboard kidney shaped containers – another move was not what I needed. I was transferred to a ward where I met an frail old lady in a hospital gown impersonating Darth Vader whilst pushing a zimmer frame who said ‘Hello my love’ as she passed me on my way to the loo. Was I hallucinating?? Sick bowl in hand I shut my room door behind me and laid there with the light on.
Before I could get out of bed the following morning Gary was back by my side with my shower bag, a change of clothes and eager to know the events from last night. I filled him in on my results from the usual observations, progress with taking the transplant medication, Darth Vader and an encounter with a strange mobility frame over the toilet that meant my feet didn’t touch the floor when I pee’d – not easy when you can barely stand up. A burning question that didn’t need answering was ‘Did I still feel sick?’ Sadly I did and before long this was very obvious. Up and down I stood, on my side, back on my other side, in the chair, in the other chair, none of these were comfortable, was this ever going to stop?! The shift change and the arrival of new staff with new enthusiasm brought me new hope that they would be able to fix me, I metaphorically kept my fingers crossed.
My not so comfy bed…
Upon catching a whiff of myself I decided it was now ‘shower time’ but I knew that I couldn’t do it myself – that’s what husbands are for. Like teenagers (albeit I was very slow, frail and was clutching a sick bowl, dragging a drip and Gary was holding my ‘transplant PJ’s’ and pretending to wear a fresh bed pan as a hat, desperately trying to make me laugh) we entered the wet room through the old concertina door. He ran the shower and I attempted the ‘bag of fluid through the arm of the pyjama top’ trick before getting naked and plonking myself on the chair. I think Darth Vader left it there but I used it nonetheless (I think we bonded in the corridor and figured she wouldn’t mind). Like the ‘warm bath feeling’ drugs yesterday there was a break in my pain and I ‘Molten Browned’ my day old odour away (Sorry! I didn’t say this post would be glamorous).
By lunch we were back to pain and sick bowls and after a visit from a Doctor I was given my second warm bath feeling of the day (this time the I-V kind). I laid back on the bed and wondered what the back-up plan was? What if they couldn’t get this stop? How were Pam & Ken feeling? The hospital I had been taken to didn’t do transplants. They weren’t familiar with the drugs I was on and the Doctors I had spoken to barely grasped that I was no longer a diabetic. I was in no state to panic because the warm water had now reached my toes and after all, I had trusted NHS staff before. I shut my eyes, curled into a ball and slept.
That evening the drugs started to work and I sat back with relief knowing that I would now be able to take my twice daily handful of miracle pills; the pills that allow Pam & Ken to stay where they are. I was used to them now and I didn’t want them to go anywhere, thankfully normality was in sight. I was home before lunchtime in the comfort of my own home, tired and amazed at how something so normal (ordering a take out) had almost compromised the one thing that keeps me so well (technically two things!).
Starting to feel ‘normal’ and waiting for shower time
Sitting on the sofa last night my husband turned to me and said ‘The past 10 days have been the most worrying for me since you started getting ill’. I didn’t know what he meant but he explained. ‘I was worried that after all that you have been through this could have been rejection’. I didn’t reply, I didn’t know what to say, I just held his hand.
I used to have diabetes and kidney failure, both chronic illnesses that meant they consumed my whole day. Not an hour went by that I didn’t think about one of the conditions. Not a night went by without the constraints that the conditions brought me. These had now been swapped with the thoughts of the fragility of my new organs and my donor; how to look after them, how to make them last as long as possible, how to avoid rejection and the focus hadn’t just changed for me but for those closest to me also.
I had considered (at length) during my time building up to transplant how life for me would change but I hadn’t thought much about how different it would be for those around me. Surely it would be easier for them? The daily worries involved with brittle diabetes had gone, I had been fixed, they wouldn’t need to worry about me any longer. I was slowly realising that the daily worries had been replaced by a back burning occasional thought of rejection – This bout of sickness had made that very clear.
The worries never go away, they change. You learn to live with them and others’ learn to live with them but they never leave. How can they? Times when you are not in control of your body is when it is most apparent but that doesn’t mean the worries don’t creep up and hit you across the head occasionally. This is life we’re talking about, a life that has been given to me selflessly by someone else. A life that I feel I need to make the most of.
I don’t want this incident to change my behaviour, I didn’t do anything wrong, it was an accident. It is easy to let the sense of responsibility overcome you and the risk of rejection consume you. It’s easy to slide into a cocoon of bubble wrap to protect you from the harmful outside world. But I’m trying not to let it – a balance is what I’m striving to find. I will still religiously wash my hands, take antibacterial hand gel with me everywhere and still cross the road if I spot someone sneezing or coughing on the same side of the road as me but I won’t stop me for enjoying this new life I have – although to save some worrying I may stop eating Indian food!!
Diaries of Lea 