Category: Transplant

How my new organs dealt with Chicken Tikka!!!

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*****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.

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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.

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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!).

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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!!

Walking at the Arboretum after a week long recovery at home
Natures natural medicine

 

 

 

The road to recovery

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14 weeks on and I feel great! I knew that it was going to be a ‘life changer’, a slow and steady recovery but it’s not been what I expected. There have been far more tears, pain and changes to my body and mind I could ever have imagined. Even with all of that I can honestly say that not only is my body healthier, my smile is bigger but my new found love for chocolate croissants and gingerbread men is far greater than it’s ever been!

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Frank couldn’t wait to be back on my lap

The first few weeks were very much focused on managing the pain and making sure that my tablets were taken at the right time. Visitors had been given their ‘no germs in this house’ instructions, the cats had received the attention they wanted and rest. Rest, rest, rest – I took the advice of the professionals, put my feet up, slept (a lot) and ensured that I took pain relief when needed, i.e. regularly. Thankfully my ‘trusty steed’ aka Gary was on hand to do all those things I couldn’t: emptying the bins, changing the bedding and lovingly preparing me the only thing I fancied to eat – a Pot Noodle.

Early days hospital clinic appointments are usually three times a week but because of the time of year (the week before Christmas) I only ever did two weeks of twice a week and because the schools had already broken up our trips early in the morning to Oxford were easy. Well…apart from having to cuddle my stomach whilst Gary expertly navigated his way around the multitude of pot holes and tight corners on the 60 mile journey (each way) between home, the clinic and back. It’s amazing the bumps and twists that are in roads that normally go unnoticed however when your stomach has been cut open from top to bottom and is held together by some stiches and some magic glue holding in the most important thing in your life you become very aware of every miniscule lump and bump. Bloods are taken at each visit and on these days you are asked not to take your Tacrolimus (one of two anti-rejection drugs I am on) until your blood has been taken. The Medics then look at how much is left in your system (as well as look at other indicators) and make a decision whether to adjust the dose. The goal is to have enough anti-rejection medication in my system so that my body doesn’t reject my new organs (pancreas & kidney – aka Pam & Ken) but not too much to compromise my immune system unnecessarily. On a couple of occasions (early doors) my dosage was adjusted but recently its been the same – which is great because I can make up my pill boxes for a few weeks at a time. It’s an arduous task but an important one.

My monthly pill box
Daily Meds sheet
One of these comes with me everywhere
My niece helping me make up my pill boxes
Breakfast with a side of pills

 

Being at home that first week could only be described as surreal and a little bit uncomfortable – a small price to pay in my mind (but I am trying to be honest about the experience). Bedtime involved Gary walking behind me up the stairs as I was still a little unsteady on my feet, 6 pillows in different configurations propping me up in bed and sleeping on my back as ‘side sleeping’ (my usual sleeping position) was out of bounds as it felt like my whole stomach was pulling my new friends out of place and I was scared the pressure would undo the perfect stitching that was holding everything in. Daytimes were spent on the sofa with a need to lie flat every few hours to help the constant back pain caused from holding myself upright with my back muscles instead of my stomach which felt as though it had been ripped apart…oh wait it had! Although, precisely cut apart not ripped! Mornings were the best time of day as after a good nights sleep (thanks to Tramadol) I woke feeling rested. By the time I had done my obs (blood pressure, blood sugar, weight and temperature) and taken my medication, eaten breakfast, showered and dressed (well donned clean PJs or anything stretchy!!) I felt sore and was ready to zone out again on the sofa. The days went by quickly as I drifted in a state of sleepy haze whilst I got used to my new fully functioning body. With a steady flow of tea and enough snacks scattered around to try and entice me to eat we made it through the first week at home, me and my new friends Pam and Ken.

Harry Potter. Every patients recovery companion!
Presents from a friend
Trying to tempt my tastebuds
Raw chocolate orange – yummy!

The second week was a little different and by far the worst week of all; I had gone off my food, lost weight and my bowels had decided that they didn’t want to play ball. My kidneys were still flushing out all the toxins (good times) but my bowels had forgotten how to work (bad times) leaving me feeling sick, bloated and painful. On top of this it had thrown my sleep out and I was now having severe shooting nerve pain in my right leg. By late afternoon every day I was feeling shaky, exhausted and very uncomfortable and, desperately searching for a way to make myself more comfortable. I kept telling myself I knew this wouldn’t last forever but it wasn’t taking the pain away and as all my obs were normal I knew it was just Pam and Ken settling into their new home. I was taking my pain killers regularly which weren’t helping with my bowels as they can bung you up, and taking my meds on an almost empty stomach was making me feel sick; which with it brings its own worries of bringing up the anti rejections meds that are so vital in keeping my new organs working. All in all I wasn’t sure if I was strong enough to do this at home and was questioning if I had come home too early.

I turned up to my next clinic appointment in a weakened state and feeling the worst since having the op. Getting there early meant we were seen quickly and it didn’t take long before I was in full panic mode and feeling like I had lost control trying to explain all this to the Nurse I had only met once before. It is at times like this when I realise that Gary has been there for me every step of the way; every check up appointment, every operation, every time I have been scared I wasn’t going to make it he was there – and he didn’t let me down on this occasion. With the reassuring touch of his hand he spoke on my behalf and explained how I had been over the past few days. I tried again to explain how I was feeling but the air still felt incredibly thin and too far away for me to grasp; my efforts only resulted in my chest tightening and oxygen depleting sobs. Reading my mind Gary held my hand whilst I focused on calming myself down enough so my blood pressure could be taken.

It turned out that I was ok, that there were some simple things to do that would make me feel better; drink more fluid, at least 2 1/2 litres a day and come off the blood pressure lowering tablets that I had been on for years but were no longer needed because my new organs were making my body work properly. ‘It was normal’ for my bowels to take a while to settle after the operation and that ‘not going in a week or so’ was fine. I was given some laxatives to help move things along and was given some Amitriptyline for the nerve pain I had running from my groin down my leg as this was also ‘to be expected’. The femoral nerve had probably been nudged during surgery and needed time to settle back down the Nurse explained. The Amitriptyline (also a anti depressant but can also be used for relaxing muscles) would help with the nerve pain and aid sleep (halleluiah). After hearing that all my symptoms were normal and easily related to the surgery my erratic breathing started to steady and I was sent on my way to get my usual bloods taken.

I had been so worried about what my symptoms meant that as soon as the Phlebotomist asked me if I was ok my emotions came flooding back and tears fell once again. I had seen the same ladies here for the past few years during my work up to dialysis and transplant that they knew some of my history and showed genuine concern. All I could say was ‘my organs were fine’ – I felt like a wally! She then did the nicest thing and pulled the curtain around where I was sat, held my hand and told me that ‘What I had been through was massive and that letting it out was ok’. She just sat with me and let me cry. I realised then that it was my body and my mind that needed to heal, both had been through so much in such a short space of time that they both needed attention.

imageWeek by week I saw my kidney function improve and to my amazement my blood sugar levels stayed stable. My appetite increased little by little although I had noticed changes in what I fancied – The thought of a diet coke made my skin crawl (and still does) and I had gone off chicken for fear of it not being cooked properly (and that hasn’t quite left my mind yet). I became slightly obsessed with eating the right things (as advised my the dietician when you are released from hospital), staying away from germs and avoiding anyone who was sick. Even now my husband comments on my Pavlov’s dogs type response to people who cough or sneeze when we are out and about – My face screws up and my body turns away from the perpetrator! As sure as the time ticked by my body – the wonderful miracle thing that it is became stronger. My scar healed, my energy levels grew and my fragility decreased with every passing day.

Week 2
Week 3
Week 4
Week 5
Week 6
Week 7
Week 8
Week 9
Week 10
Week 11
Week 12
Week 13
Week 14
Today!

My physical improvement has been evident, at first walking around the house felt uneasy but every day I increased the amount of movement I did and by my 8th week I was back at the gym – a lot slower than normal, avoiding anyone who looked overly sweaty and manically using the antiseptic hand gel on our way in and out. Bedtimes still remain a lot earlier than pre transplant but this is partially my choice; firstly I still get quite tired towards the end of the day but I’ve figured my body needs time to heal and that won’t happen overnight. Over the last twenty or so years it has had to deal with every cell being corrupted by diabetes – it needs time to itself to resolve pains and mend wounds that I can’t identify and I feel I owe it this time. On this note I can already see an improvement in the thickness in my hair, my skin colour and the strength in my nails – my cells are slowly but surely recovering too! Day by day I have been able to walk up an extra flight of stairs, spend longer out with friends and just generally do more. The novelty hasn’t worn off yet and I’m not sure it’s going to.

Clinic appointments lessened from once a week to once every two weeks to where I am now only going once every three weeks. With every increase in time between appointments came with it mixed emotions; elation that the medics were confirming I was ok, another milestone had been hit and then the massive sense of responsibility of being allowed to look after Pam and Ken unsupervised for a longer period without being checked in on. Unbeknownst to me the Churchill Hospital has become a place of comfort, a far cry from the aversion I had for it early in my diagnosis; coming back to it feels like a safe place where people (patients and medics) understand empathetically however, I look forward to the day when my appointments are 6 monthly!

The day I realised that all this hadn’t been a wonderful dream or that no one was going to tell me that my time was up with Pam & Ken and that they needed to be returned was the day my dialysis machine was unplugged and taken back to the hospital. Up until that day I had been half expecting things to go back to normal. I kept my insulin, my dialysis room remained and my supplies for both were still stocked. 6 weeks after my operation and it was the day the Technicians were coming to collect ‘Marina’ (Lovingly named after the Nurse who taught me to home dialyse). On that morning I said my goodbyes as she was wheeled out of her usual spot and loaded onto the van ready for someone else to have her attention. When they closed the door I cried and cried – Marina had become my lifeline during the worst and best year of my life; the year in which I had been tied to the house three times a week but also the year in which it had helped me prepare my body in readiness for my new friends. As they drove away I took a minute to notice the space Marina had taken up in the ‘old office’ and in my life – it didn’t stop me crying but I felt thankful.

Marina in her usual spot
On her way to her new home
Out she goes…
Sad to see her go, happy for P&K to stay
Saying my goodbyes

My last appointment was brief with Dr Mason, my Consultant confirming that my anaemia was improving (slowly), my sugars were perfect and my blood pressures were normal (although always slightly high at first during my appointment as my anxiety always gets the better of me – ‘white coat syndrome’). As I sat there listening to him I couldn’t quite believe my luck so thought I’d test the water by asking if I was now allowed to go swimming and could I book a holiday abroad for my transplant anniversary. He said ‘yes’ to both and I happily skipped out of the room – something that a year ago I wouldn’t have been able to do without being out of breath and being very tired. As I stepped outside the clinic doors I noticed the sunshine on my face, it was beautiful.

This weekend after having a mini break in Cornwall full with ‘Pam & Ken firsts’; first time swimming, first G & T, first Spa, first fish and chips, first guilt free ice cream, first walk along the beach, first piggyback… we went ahead and booked a monster holiday abroad ready to celebrate my anniversary with P&K. Finally, after a couple of years of life being put on hold – being shrouded by a heavy curtain of unknown I can now see we have something to look forward to.

First G&T
First guilt free ice-cream
Soaking up the sun after my first time on the beach with P&K
First concert
First pamper session
First time down the pub

 

Long may the sun shine on Pam & Ken…

 

 

 

The first day with my gifts of life and feeling thankful

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By 9am I was back on the Wytham ward where it had all started around 24hrs before, yet so much had changed: I was no longer on the transplant list, my days would no longer be taken up by haemodialysis and daily injections were going to be a thing of the past. I was sat hooked up to wires, tubes but was feeling amazing. I was sure someone would soon come and wake me from this dream.

…They didn’t! Gary sat at my bedside holding my hand as I drifted in and out of sleep, the pain was manageable, more like a dull aching pain and it was only when I moved to re-adjust myself that I even noticed it. I was hooked up to pain relief that I could administer myself so, with one click of a button the pain eased quickly. The euphoria of being given a new lease of life was what I was feeling most. I waited for that feeling to subside but it didn’t and it hasn’t yet.

Nasal tube draining stomach fluid and the dreaded ‘neck line’ that didnt cause me any bother at all.
Me looking down at my stomach – The Surgeons did a good job at matching my tattoo back up!
Breakfast of Kings!

The first morning post transplant I was given the breakfast of Kings (well it felt like it at the time)  – Tea and toast. It took a while but surprisingly I was feeling hungry and polished it off with no problem. Soon after a Physiotherapist popped in and to my amazement got me to my feet and guided me around my bed – wires, tubes and a catheter all complicating my route but I did it. My only fear was that my insides would come tumbling out of my gown, I was reassured I had been securely stitched and glued together and would be fine. It didn’t stop me placing my hand over the top of my stomach…just in case!

No sooner had I gently positioned myself back onto the bed than the room filled with what appeared to be a swarm of angels – they were actually the Surgeons, Registrars and Doctors that had been involved with my treatment and surgery since being on the ward. I wanted to be able to jump up and hug them all, the team in front of me had taken my Donor’s organs and put them into my body with great skill and precision; Overnight they had taken away the illness that had caused so many complications. ‘Surgery went well and although we had to remove your ovary’ the Surgeon said. ‘Sorry….what?? What ovary??’. From waking up, moving to the ward and snoozing no one had told me about the fist sized cyst they had found on my right ovary, which had to be removed and was being sent for testing (although they were pretty certain it wasn’t cancerous after having called in a Gynaecologist and Oncologist during my surgery). My mind was blank and normally that sort of news would worry anyone but just a few hours before my future health was in their hands, my trust was theirs and I knew they would do what was best for me. The only emotion I felt was for Gary (my next of kin), he had had to give the go ahead for the ovary to be removed on my behalf when I was under anaesthetic; as this was seen as another operation for which I hadn’t consented. Receiving any call mid way through your wife’s surgery must be heart-wrenching, to this day he says he had no doubt over what I would have wanted, 1) Have the ovary removed and continue with the transplant, receive the organs and change my life or 2) close me up, wake me up ask me for my decision and reschedule for the ovary to be removed and then wait again on the transplant list for another well match donor. I’m pleased he knows me well enough and we had talked about how important this transplant was going to be for us so he could confidently decide on my behalf.

Morning meds – one less in the evening
Georgios & James’ handy work 🙂
Day 4 – Check out that glint in my eye

Over the next day or two the wonderful Nurses got me into a routine. Basic obs every couple of hours: blood pressure, pulse and blood sugar. Daily blood taking, weigh in and pancreas amylase testing at breakfast time (a test on the fluid from the pancreatic drain in my side to detect any inflammation in the pancreas; a high reading can show that there is an issue with the transplanted organ, even before blood sugars rise), catheter emptying as and when needed and medication at 8am and 8pm precisely. Woken up at 6am and the ward was quiet by 10pm. The first couple of days are a blur, I had lots of lovely visitors, not staying too long as I was sleepy but I was starting to really feel the benefit of this beautiful gift I had been so selflessly given.

By day three the grogginess from the anaesthetic had worn off and I could now see the difference. The colour had started to come back in my skin and the fluid was starting to flush out of my system. My ‘fat feet’ were starting to disappear, my cheekbones were coming back and there was a definite glint in my eyes. I felt stable, its hard to explain but I had eaten, slept, moved about and even devoured a punnet of grapes and I still felt well. No high or low blood sugar symptoms nor did I feel exhausted from dialysis; I just felt normal, if not a little bruised.

Yummy grapes
Beautiful Wishing Tree from my Auntie Dawn
Earring and a whistle – what every girl hopes to find in a Hospital Survival Kit – Thanks Lou!

I had lots of visitors, family and friends (who brought me grapes, a Hospital Survival kit, chocolates, a novelty tie and this beautiful ‘Wishing Tree’ which made a fantastic Christmas Tree which all the Nurses came to admire) but also the Transplant Coordinators (who had called me out on my previous false alarms), the Nurses from the dialysis ward, my Consultant and even my Boss! All pleased that my call had finally come and the operation had been a success. Everyone said how well I looked (all things considered) and with every day that passed I began feeling stronger and stronger. I was told to walk around the ward a couple of times a day, cough three times (twice a day) and keep my legs, feet and hands moving to get the circulation going, so I did. I didn’t push myself too hard, I did what I was told and put my feet up the rest of the time – following orders does actually work (don’t tell my Boss!). Slowly but surely over the next couple of days the drips, catheter, nasal tube and neck line all came out. My pancreatic drain being the last one out on day 5. Each a massive milestone, a way for me to set short term goals to get me through my time on the ward.

Fat feet
Scar, pancreatic drain and plasters on my legs from blood thining jabs…ouch
After first shower on day 4

Daily blood results came back showing that my organs were continuing to improve. When your kidneys start to fail (which mine did about 5yrs ago) your Creatinine is measured (this is a blood test to show how well your kidneys pass out Creatinine which is produced by your muscles) and your eGFR is also measured (this uses your Creatinine result, your age and sex to give you an approximate % of kidney function). These are both monitored over time to show a trend of how well your kidneys are working. Before transplant whilst I was on dialysis, on days off my Creatinine reached 549 at its highest – it has come down as low as 116. My eGFR was 10% on the day I started dialysis and has since peaked at 48%. I (quite literally) have not felt so good in years!! And the super bonus was my organs Pam – Miss Pancreas and Ken – Mr Kidney worked right from the get go. Occasionally they can take time to wake up and start working resulting in the recipient needing to continue with dialysis or resume taking insulin. Not mine though…as eager as their new guardian was to look after them they started straight away to look after me. My kidney doing particularly well. From hardly peeing at all to ‘super kidney peeing’ every time I drank something. At least I had my own bathroom!

On day 6 I was told that I could go home the following day, in fact I was told ‘You have done so well, we have no reason to keep you here’ and I couldn’t believe what I was hearing although I did feel great, by tomorrow I would be home with the greatest gift of all. That afternoon I had packed up my room (slowly and not lifting anything heavy of course) and couldn’t wait to tell my husband who was a little shocked to hear I would be coming home so soon but he was not surprised. He left early that evening to ‘tidy up a little’. I had images of take away cartons and mouldy tea cups but that didn’t matter, I would be going home and that’s when my new life would begin.

Time to pack up my cards
Sweet SWEET moouse!!
Hubby’s early morning delivery on his way to work…ahhh

‘Going home day’ arrived and I began thanking every member of staff that had looked after me so perfectly during my short stay and I became tearful.  With every ‘thank you’ came a tear or a wobble in my voice. The realisation that I had gone in broken and would be going home in a matter of hours fixed was overwhelming. Gary arrived early and I had two things to do before going home 1) get through my glucose tolerance test and 2) go and see the ‘Old boys’ on the dialysis ward. By 10am I had received a bottle and a half of Lucozade, I drank it and was allowed to go off the ward but had to be back to have a blood test in 2hrs time to see how Pam had coped with the massive amount of sugar I had just consumed. Feeling full and sugar laden Gary found a wheelchair and we made our way off down the ward.

One of the joys of walking around the ward was seeing others who were also on the same journey; sadly some were returning because of complications but all were in good hands. We shared empathetic looks as we passed in the corridor or walked passed one another’s room doors. We were just about to leave the ward and I recognised a face. Someone I knew but not from this ward. ‘Mary…!’. Mary had been on the same dialysis ward as me albeit on different shifts, but we often passed one another and had not long ago met at the ‘before and after dialysis communal loo’, neither having had made any progress. To see Mary in bed having (literally) just had her transplant was amazing. I shared her dialysis struggles and her life too had just changed. The Organ Donor Register and Transplant Coordinators had come up trumps once again. After sharing our congratulations with one another and passing her adoring (and relieved) family on our way out we rushed to the dialysis ward to share our news.

Before leaving you are seen by the Transplant ‘going home team’, Ali Smith (a Transplant Nurse Practitioner) came to see me and talked me through how clinic works and what to do if there was a problem whilst I was at home. She sat on the bed with me and told me to expect highs and lows. She said that some days will be easier than others, I needed to give my body time to recover and should take things in my stride. She also spoke about my donor. Had I considered ever writing to the Donor’s family? If I did they would happily coordinate this for me and so the letter could be more personal they could tell me a small amount of information: the sex of the Donor and a rough age. I already knew the answer, I had thought long and hard about this from the day I was listed on the register – ‘Yes in time’ I replied. Ali had a certain way about her and I didn’t realise until a week or so later when I was at home crying every time I talked about the Transplant – I instantly thought about my Donor and her family, especially as it was so close to Christmas. Before I left the ward Ali told me the age of my Donor, 25-35yrs and that my Donor was a female. Ali had experience speaking to recipients and this showed, actually I could feel it. I sensed she had seen many go home and many other happy people start their journey before me. She wanted me to know that with highs sometimes there are lows and I just needed to be aware of this, ‘It’s normal, it’s ok’.

Feeling prepared, relived and having said thank you and goodbye to everyone on my way out knowing I had shared the most life changing experience with these people by the time we got to the car park the tears were freely flowing. ‘It’s normal, it’s ok’. This was the start to knowing what Ali meant.

thHCG87CMA

I can’t begin to thank everyone enough to truly show how grateful I am for the care and attention I was given while I was on the Wytham Ward in Oxford. From the lady who brought the food menus around, Transplant Coordinators (especially Simon & Khush – thank you for my precious call) and Health Care Assistants to the Pharmacists, Surgeons, Registrars, Doctors and my humble Consultant (Phil Mason). Thank you!

Special mention to both Georgios Vrakas and James Barnes (my Surgeons) who gave me the bad news on my previous unsuccessful calls but who came good in the end – skilfully plumbing in my new gifts and managing to match up my tattoo pretty perfectly!

I do have to show a massive appreciation for the Nurses who tirelessly ensured I had the dignity to recover in comfort, not in pain and who always brought a smile with them into my room and are the true heroes of the NHS. Joanna – You were an absolute star!

Thank you to all my family and friends who showed their support, you know who you are x

To my husband – You’ve got your wife back!!

Last but not least ‘thank you’ is not enough to show my gratitude for my Donor and her family. Without their generosity and their will for someone to live a better life I would not be sat here today with such a passion and excitement for life, feeling better than I ever have and doing all I can to raise awareness of Organ Donation and it’s importance. I hope to one day, when I find the right words to say write to my Donors family to express how I feel, but for now – if you by some chance read this, Thank you x

 

 

 

 

 

 

Third and final call!!

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As I sat there in the tiny room affectionately known as  ‘The Cupboard’ having been called at home earlier that morning (5:30am), mixed emotions ran through my head. ‘We have some organs for you, we’d like you to come in’ the lovely lady said at the end of the phone – you’d think I would have been ecstatic, screaming from the rooftops as the news of another shot at getting the organs I so desperately needed had finally come but the overriding feeling I had was anxiety. Not about the operation but because there is always an element of uncertainty and doubt right up to the last minute before going down for surgery and even then it’s not until they open you up…! As with all the other call outs, it was going to be a long day, so going through the motions, I had a shower, quick cuppa and an apple and we were on the road.

Since my last blog I’ve had two Primary calls for transplant; the first didn’t go ahead because the organs couldn’t be harvested (the artery had wrapped itself around the pancreas) and the second time the organs were not healthy enough (fatty deposits on the pancreas making it too risky to use); both those calls were only one day apart, I could hardly believe how lucky and unlucky I was all at the same time. With the first of these calls I told a few people but the disappointment of having to tell them all when it didn’t go ahead meant one day later when the second call came I only told my immediate family. Large support groups give great support but it also means lots of condolences when it doesn’t go to plan; some find that encouraging but for me it was one too hard for me to deal with. It was not until a few days after the second call had been aborted that I told my Nan, best friends and colleagues. For me it was just too  painful to re-live over and over again…

This time, on the ward there was no news. After being told to go and get some breakfast we were told that the organs were being harvested from the donor at 10:00am and that was all. I should have assumed the status quo of ‘no news was good news’, but it didn’t stop me worrying like crazy that it was all going wrong.  First The Cupboard, now a delay in getting the organs out. Every time a Registrar, Nurse or Doctor walked by my room my heart filled with dread. Were they coming to tell me that I could go home? Were the kindly donated organs unsuitable? My blood pressure went up and down like a yo-yo every time I heard the sound of the Registrars purposeful footsteps walk past ‘The Cupboard’ door. If only those damn iPhone earbuds had stayed in place, it would have made the next few hours easier to cope with; instead I was on high alert!

There was a lot of activity on the ward as the Doctors were discharging patients and Nurses did their observations. All being very sensitive to the people, patients and potential patients sat waiting in the rooms on either side of the corridor. Naturally I couldn’t help but try to tune in but it didn’t help, I couldn’t hear anything related to me, but the ‘nosey’ in me kept my ears pricked – just in case!  One noise that was loud and clear was the lunch bell. The warm smell of homely food. Being nil by mouth it felt like torture but good torture, if ever there was such a thing, giving up something for the greater good!?! It’s amazing how focused you can be when you know just how huge the rewards could be. Although the scent of custard truly tested me…

At 3:30pm the Registar, James Barnes came with news that the organs had arrived safely in Oxford (I wanted to jump up and hug him but I didn’t…!) and that the next hurdle was for them to check them to ensure they were perfect. He smiled and told us it was looking good but as he left his knowing nod reminded me that I needed to stay calm and that we weren’t over the finish line yet. The next few hours were killed by mindless chitchat and unnecessary trips to the toilet down the corridor, doing anything we could to pass the time. We were left pretty much to ourselves so I made myself comfy, or as comfy as you can on a plastic chair…the trolley had started to give me a numb bum so I’d swapped with Gary (husband) who was showing me how easy it was for him to fall asleep whilst sat up-right; something he’s mastered in all his years of waiting for me in hospitals. He seemed calm enough, not excited and that was rubbing off on me. Family were texting, eager to know what was happening but I couldn’t tell them any more as it had all gone quiet again. I updated everyone around 5:00pm to give them the reassurance that all was going ok but we weren’t in the clear yet. I felt awful not being able to tell them more because I know they longed for the good news as much as I did…but I couldn’t, we were in limbo and therefore defaulted to not getting my hopes up, I had been burnt before.

It all felt weird, I couldn’t put my finger on it but it felt different. I’d been put in ‘The Cupboard’, there had been the delay in harvesting the organs, being allowed to eat breakfast, we had been told there was no theatre slot for us during the morning, I wasn’t in a gown and had no cannula fitted. I was just waiting to be told ‘thanks for coming in but you can go home now’. Instead time ticked by, nothing from anyone then the Anaesthetist appeared, which wasn’t unusual as I had seen one of their kind on several calls previously. The normal questions were asked and we were interrupted as her bleeper diverted her attention. Politely she dismissed herself and came back seconds later. ‘Just a bleep about your theatre slot’ she said as if she was just saying ‘hello’… It was the first positive sign about the operation going ahead that I turned to Gary with tears in my eyes and smiled, unable to speak. At this point no words were needed, we both knew what those seemingly simple words spoken by the Anaesthetist meant.

No longer than a second after she left James (Registrar) arrived and this time their was no sign of a caveat following his smile, only a double thumbs-up, ‘The organs are perfect, let’s go ahead’. I can remember those words clearly in my mind, slow as if someone was telling me that they were going to be important and that I’ll want to remember them forever. ‘They’ll be down for you soon’ he said as he turned on his heels and left. I’m not sure how I didn’t fall over but I did cry, a short burst of happiness I allowed myself to let out, the words I had been waiting for, the chance of my lifetime so far had just been handed to me. I felt Gary’s grip of my hand get reassuringly tighter as within a minute the medics flooded in, exactly 12hrs since my phone call that morning.

One Nurse with a gown,  one with some tablets and another one I have no idea what she was doing, there was too much happening. I stripped off my jeans, Gary was taking custody of my Wedding ring and I was swallowing some antibiotics all at the same time.  I tried to call my Mum and Dad but couldn’t get through so handed my phone to Gary with instructions to call them and like magic the Theatre Porter arrived with a wheelchair ready to take me to where my miracle operation was planned to take place. Now this is where I cried…!

Jeans off, tablets taken...all set!

Jeans off, tablets taken…all set!

Sitting in the chair the reality of what was about to happen hit me. The whole 416 days I was on the list I hadn’t once thought about the operation itself, sat in that chair making my way down to theatre my nerves started to creep in. With Gary still by my side we said our goodbyes and right then I was more worried about him. I was with professionals, he was going to be alone…this thought kept going through my head as the Anaesthetist I’d met earlier tried (successfully) to distract me. The next thing I remember was some man I’d never met before brushing my teeth with warm water in what appeared to be a dimly lit room and a lady whispering to me that they were giving me a wash…I couldn’t tell if I was dreaming or this was standard procedure; either way I was happy to play along!

After my freshen up and as if she was telepathic a Nurse asked if I wanted to call my husband. At what seemed like a silly question I vaguely remember giving her my house phone number which after trying wasn’t answered and then Gary’s mobile number – how I did this I do not know, I can’t remember it now as I type. Obviously being pumped full of pain relief helps your memory. The phone was ringing and I heard the connection of the call and I calmly said ‘Hiya…’ To me it was like he had just stepped outside and come back in but I could hear in his voice an overwhelming sense of relief  ‘Hiya…’ he replied.

What seemed like a heartbeat later I could hear familiar footsteps. Not the ‘professional’ kind but the kind of ones I’d heard a thousand times before: walking across our drive, down the aisle and now into intensive care. Smiling through the tears in his eyes he was finally by my side, holding my hand and telling me how proud of me he was…I just wanted a cup of tea!

Waking up in Intensive Care after a 'freshen up'

Waking up in Intensive Care after a ‘freshen up’ and a cuppa. My new life was just about to start!

Back up call No.2

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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.

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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.

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/

Transplant?!? Coming to terms with it

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I’ve dealt with a fair bit of health problems but being told I would need a transplant knocked me straight off my high heels.

Clutching my NHS number labels in one hand and handbag in the other I sat patiently waiting for my bloods to be taken so I could leave. My husband, a seasoned professional appointment chaperone, considerately offered conversation to take my mind off what has just been unveiled to me. Shock was how medical professionals would have described what I was going through, however I felt everything; I felt the blood rushing through my veins, the temperature rising.  Could I have heard right? Did the snotty Doctor just say that I was going to have someone else’s body parts placed inside me? This wasn’t in my plan, this wasn’t how my life was supposed to go. Tablets, injections? Yes. Open me up and insert new body parts? Erm…nope, not in my plan!

Even after 20yrs of diabetes I still didnt manage to look as the chatty phlebotomist drains me of three vials of my, ‘very low in haemoglobin blood’. In shock and anxious to get out of there I drifted through reception back to my car. My husband following me, sensitively (and wisely) reading my mood, choosing to leave me to open up when I was ready. Forcing the matter would have only ended badly for all involved. With the car door shut and as if by magic my emotions surfaced. ‘Cry me a river…’?!? There was definitely a teary river being cried in the car that morning!

Niave I am not, I had read up about Chronic Kidney Disease and I knew what treatments were available to me and, what the success rates were but nothing, and I mean nothing, not all the cups of tea in China could have prepared me for the emotions that were about to run through my body.

Returning to work that day I faced the world with my usual smile, smart dress and killer heels. Unbeknown to everyone else around me I was actually a shabby, trainer wearing mess inside.  Every loo break was actually to unleash the build up of tears, teas and coffees had extra splashes of saltwater in them and during the drive home I found myself sobbing uncontrolably like some traumatised toddler. Like a national tragedy this seemed serious but I couldn’t tell anyone. What do I say? What do I tell people? Should I even tell people? I had never been here before, I wasn’t in control and I didn’t like it.

Coming from a pretty straight talking family and the words ‘Man up’ and ‘Get a grip’ are often thrown around but this time it was too big. I wasn’t going to ‘man up’ and I couldn’t ‘get a grip’ I needed to let this out, I needed to grieve for the old me and work out what to do next. I won’t deny the next few months weren’t pretty. I can only imagine the number of  times my mascara has ended up ingrained on the shirt of my husband. To everyone else I was being strong, family and friends complimented me on my bravery; I am not brave, I have no choice. My body is broken and it needs fixing, full stop.

I spent the next few months researching ‘simultaneous kidney and pancreas transplants’ (SPK). Oh yes, I wouldn’t just be waiting for a kidney but a pancreas too. It’s amazing what you can find on the internet, uplifting tales of superhuman women who are able to swim around the world backwards after having everything replaced but their eyelashes to tragic long drawn out sufferings, failed transplants and stories of surgical disfigurements. The Internet was not the place I needed to go (and that’s my advice to anyone for most things unless you need ideas of what a certain piece of ikea furniture is meant to look like). I needed to speak to real people, transplantees, people with scars, people brave enough to go before me.

I had been in touch with the Predialysis Team who had been there for me right from the start. From when ‘they’ (the consultants) realised my kidneys weren’t going to recover. Oh yes, I haven’t mentioned this yet. After a slow decline in kidney functionality over many years (a common complication from diabetes) I had a bad reaction to codeine which dropped my functionality down to 10% (at 20-15% they start talking to you about dialysis) and they never fully recovered. I had weeks of praying for them to bounce back and they did a little, two months later they were back at 25%. It wasn’t long after that that they began to decline further.  Within 6 months I had gone from ‘keeping an eye on my functionality with intervention probable sometime in the next 5yrs’ to ‘can you start dialysis on Monday’. All this was a lot to take in and just when I thought no one else understood along came (I’m sure she won’t mind me mentioning her by name) Debbie, my Predialysis Nurse.

I was referred to Debbie as before transplant I would need dialysis. I knew this was inevitable and thought I was ok with the concept of having to clean my blood for a bit until my spare parts arrived. Being ‘ok’ with something in your head and being ‘ok’ with something when it’s fully naked, smack bam in front of you waiting for you to make a life changing decision is very different. Very different. Debbie became my go to help, my confidante. I would turn up for appointments in my work dress and suit jacket, my uniform to the world that I was OK. On one occasion she took us to the ward to see someone on Haemodialysis. A lovely lady eating cake whilst one arm attached to a machine that seemed to be drinking her blood. We sat back in the room and asked if I was ok and had I any questions. I didn’t and of course I was ok. This was the hospital, this wasn’t my husband asking. This was the place I was meant to be strong, brave even, just accept anything ‘they’ told me,  And there it was, that moment. I looked at Debbie and I started to cry (don’t worry the tears don’t last forever). ‘Phew’ she said. ‘You are human’. It was then I realised what I’m going through isn’t normal. I shouldn’t be faced with a decision this big at my age, it is a scary thing, I shouldn’t know how to behave and yes, too bloody right it’s ok to cry!

Debbie put me in touch with a Facebook group that was set up by a lovely lady who wore her scar proudly. Along with Debbie, finding this group changed my life. It enabled me to cope. People of this group either we’re going through the same thing as I or had already been there and was wearing the SPK transplant t-shirt. For those first few months that Group became the place to ask questions, seek advice from real people.

I’m now a year down the line I can sit back and chuckle at the times I completely freaked out. My views now are very different; I now can’t wait for that magical call. In fact I would go so far as to say that I’m longing for it, desperate to be opened up and my plumbing attached to something that works. The fear of surgery, the fact the organs won’t last forever, the worry of rejection is in the past. I’ve stopped beating myself up for having a broken body and I now talk to anyone that is interested. The next step in my journey is going to be the biggest but the best by far. Let’s hope I don’t have to wait too long.