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!
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.
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.
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.
Week 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.
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.
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.
Long may the sun shine on Pam & Ken…
Diaries of Lea 