My name is Daniel, I am 29 years old and consider myself to be a very lucky young man and I will be forever grateful to the gift of life I was given by my dad. I was born with a hereditary kidney disease called Alportsyndrome. This is a rare disease that mainly affects the males and has been in my family for generations. The females in the family are carriers of the disease and are not normally affected. Since I was the first born male on my mums side of the family for a few generations I was diagnosed as a baby and my parents were advised to keep bringing me to the renal clinic year after year to monitor me.
It started as once per year all the way upto me being 12 or 13, my blood pressure started to rise, an early sign of a deterioration in my kidney function. It was a slow deterioration so my visits were then changed to 6 monthly and I got put on blood pressure medication to try to manage the condition.
I felt nothing of it and carried on being a kid. Eventually my function got worse and the visits got more frequent. I never let it affect my teenage years or early twenties and found myself in great shape working as a personal trainer and fitness coach.
Obviously the signs were there towards the end.. Extremely high blood pressure, creatinine levels through the roof, low blood counts, I didn’t produce much urine, swelling and holding water etc. I was put on IV iron every month, had to inject EPO every week. I listened to the doctors and I listened to my mum who has lived with this condition herself and she is a theatre sister herself. Me and my dad had to complete many tests around the same time I was put onto the transplant waiting list. An external psychiatrist was a big part of the process too as well as tissue and blood tests. The following is what I had written not long after my transplant and I wanted to share my thoughts to raise awareness.
“I was 24 years old, had just had vein mapping done on my arm to start dialysis at home and according to my last renal visit i was on 6% renal function. My kidneys had truly given up and we had a phone call that they were ready for me and my dad to go ahead.
Tuesday 26th April 2011 was the day me and my dad had to be in the hospital. I arrived at around 4pm with my dad and my mum, I felt calm as usual, no real nerves kicked in yet, could see my dad was a bit nervy. Which is to be expected considering what he is putting himself through for me.
They had a bed ready for me so I made myself comfortable. My dad did not have a bed which was quite frustrating for us all. We signed all the necessary paperwork and the consent forms, nothing new for us as we did the same on the 1st April before it was cancelled.
Dad needed his bloods taking and a candular putting in so he sat down on the side chair, he should have really had a bed to lie down on which he needs to do to keep him calm because he has a needle phobia. A registrar doctor named Adam was talking to us whilst the nurse was trying to put the candular in my dads arm.
Dad seemed fine until he looked at what she was doing and seen she was struggling to get it in his vein causing a bit of blood to leak out. Now he’s perfectly fine until he sees blood, I took one look at my mum and we knew my dad was about to pass out, he became a little panicky and was trying to get out of the chair.
Then his face suddenly went white and his head tilted back and he fainted, mums nursing instinct took over while the nurse on duty just stood there as did the doctor. I was telling the nurse to keep hold of my dads arm as it was dropping of the chair causing more blood to leak out.
Nightmare scenario to start our hospital experience. He came to, thanks to my mums persistence and care. I told the nurses to go get my bed and give it dad so he could lie down and relax, get a bit of colour back in his face.
Half an hour later and dad was feeling a bit better and we was all talking and having a laugh about it. We ordered our food from the sheet menu and we tooked into our meals. Think dad had a lasagne whilst i had a very nice macaroni and cheese.
It got to about 8pm and mum had to go, I remember thinking I wanted her to stay so I had both parents near me. The staff had got me a bed so I told my dad I was gonna have a lie down and read a book after i had a shower.
A few hours passed and i went to check on my dad, he had a fluid bag attached to the new candular in his arm to make sure he was well hydrated before the operation, they got that one in no problem while he was lying down.
He was watching a film on his DVD player and seemed very relaxed so we had a quick chat and i left him alone. When I got back to my bed I shut the curtain round my bed then listened to some music on my iPhone until I got sleepy, I turned my overhead light out and went to sleep.
I woke up at around 2am and was bursting for the toilet, I always needed the toilet a lot at night time before my operation as I didn’t go in the day a lot, strange but that’s what end stage renal failure can do to you. i was lucky to go at all really, some people’s kidneys don’t produce urine when they are failing.
The toilet was right outside my dads little corner so i thought I’d check on how he was sleeping. I walked up to his bed and he was awake and looked a bit distressed. He also seemed to be in pain, the new candular wasn’t in right and the fluid that was meant to be going through his veins for the past few hours was going into his tissue in his arm.
It has happened to me before on a previous hospital stay and i know how painful it can be, his arm looked swollen and tight. There was a nurse who was on a night shift and she sorted it all out and cracked a few jokes about it which seemed to help my dad feel a bit less concerned, she said it would go down by the morning.
She seemed really nice this nurse, I can’t remember her name as I’ve seen that many over this whole experience but I can picture her face. We was both so hungry and thirsty but we knew we couldn’t touch any food or drink before our operations.
I was very tired and went back to sleep when I knew dad was feeling a little better. He hadn’t had the best first night at the hospital, but he seemed to handle it all very well.
The morning of the operation, everyone on ward 9 were woken up by the day staff going through their routine. Asking everyone for breakfast and cups of tea or coffee, three different people walked past my bed asking if I wanted anything, and I wanted to say yeh but I couldn’t because of the pre op fasting.
As all the curtains drew back around the beds i had a good nosy at everyone in this part of the ward. The ward was split into 3 areas, each area had a number of beds. I was in the second room from the main corridor with 7 other people. Every single person had already had an operation in my room, no one was even close to my age, the youngest probably being 10 years older than me. I felt fit and healthy compared to these people, I always have done through my disease anyway from having a slower deterioration in my kidney function and keeping myself active all the time plus being a personal trainer helps. I had a longer time to adapt to my situation plus I just about avoided renal dialysis which I am so lucky and grateful for. To sum it up on the morning I woke up, I felt the odd one out to everyone around me.
It was about half 7 when I went to see dad, mum was already there which is what I expected because she just is always there. I received a text from Andrea my girlfriend telling me she loved me and she would see me soon which was nice and just what I needed. Dad had already put on his gown and d.v.t stockings, me and mum was having a right laugh at how he looked.
I stayed with them talking about normal stuff and obviously the operation and the day ahead. Mum looked tired like she hadn’t had slot of sleep, probably because she didn’t, I never really asked, just glad she was there. The anaesthetist doing our operation came to see us and asked us questions, a bit of a pre op check up to make sure we were ok to have anaesthetic and ready for it, he was a nice bloke made us feel comfortable. We were both so hungry for breakfast as well, we both swilled water around our mouth just for a little taste of fluid.
Our surgeon Mr Campbell made a quick visit up to the ward to have a check on us. He’s a lovely man and the top consultant at MRI. He told me depending on my dads kidney when they take it out, they may be able to make an incision through the middle of my abdomen rather than the side, this makes it easier during the operation and also helps me in the long term recovery wise.
The transplant coordinator Janet also came to see us and asked if dad was ready as the porters were on there way up to get him. He looked nervous when she said that, it obviously hit home a bit more that there was no turning back, I must admit I had butterflies in my stomach and felt nervous and apprehensive for the first time. This was it now, years of knowing and waiting for the day, all the tests and appointments over the years and it has finally come.
The porter arrived and I give my dad a hug and said good luck. Then he, mum, Janet and a couple of porters walked down to theatre. I went back to my bed and just had a lie down. Mum came back up and said dad was nervous but a lot calmer than she thought he would be. I told her that she looked tired and should go home for rest cause it would be hours now before anything would happen, she knew this anyway, she told me to chill out and she would be back a little later.
For the whole morning I just listened to music, watched a few films and kept looking at the clock, I had an idea how long dads operation would take, they told me 4 hours minimum. Andrea kept texting me and I was missing her, but I kept saying I was fine and she shouldn’t come until latest possible, as I didn’t want her rushing around even though I knew she would be, she’s just like my mum in that way, when she’s caring she doesn’t think about herself, just makes sure I’m ok first, exactly like my mum. Can’t remember the films I watched, my minds a blank from that because I was worried about my dad and how the operation was going but I knew he was in good hands with Mr Campbell.
Mum came back at about half 12 with my aunty lisa, followed shortly by my sisters Kristina and Gemma and my girlfriend Andrea. I was very happy to see everyone, but they weren’t allowed to stay on the ward because of visiting restrictions. They were trying to find out how my dad was doing, no one was really giving any answers and we were all getting worried as he was still in theatre. About an hour later we was told it was taking longer to get the kidney out, we didn’t know the reason why which was quite worrying, my family all went to the cafe downstairs while I put on my gown and d.v.t socks and chilled out for half hour.
Mum and Andrea came back up and took pictures of me before my op as I wanted to keep a picture diary of the whole thing. A nurse came to see us and said dads operation was taking longer because dad has a bit extra fat around his abdomen and it was making it harder to get the kidney out, mum thought they was probably opening him up rather than carrying on with the key hole surgery, either way he was doing alright which was reassuring. Not long after we was told dad was now in recovery and he was doing fine, that’s all we wanted to hear.
Soon after that the porter came up to get me and I said bye to mum and Andrea and said il see you soon. I was feeling very relaxed at this point. I was more nervous when dad was going down which I kind of thought would be the case as I felt more comfortable through this whole thing. I got down to theatre and was led into the anaesthetic room, I lay on the bed and had a chat to the porter for half an hour, he stayed with me till they were ready for me, he seemed a nice bloke, we made small talk to pass the time. The anaesthetist I seen earlier came through and asked if I was ready, I never felt more ready for anything in my life, bring it on I thought to myself. He put a candular in my hand and warned me that I would feel light headed for a few minutes then I will go asleep. I felt a cold rush go into my hand and straight away I felt dizzy like I was drunk, quite a funny feeling. I looked at the clock for the 50th time and could see it was nearly 3pm in the afternoon, that’s all I remember last.
When I woke up I remember hearing a few voices and knew I was being wheeled back to my ward. I was in and out of consciousness because I was slowly coming round after my anaesthetic. I got back to my corner in the ward and my sister Kristina said something to me and I said something back, can’t remember at all what but she said weeks later I replied to her ‘I’m still here’. I could see the clock opposite my bed and it said 10pm in the evening, so I was down there all together including the anaesthetic and recovery, 7 hours. That’s all I remember of that night. Waking up the next day, I don’t know what time it was but I remember being in a lot of pain around my abdomen and had the urge constantly that I needed to have a wee, that was obviously because of my catheter.
I felt so sick too, I constantly had a sick bowl in my hand, I had nurses putting antibiotics in a line through my neck every hour, taking blood every few hours, people moving round my bed. All this on top of the terrible pain in my abdominals around my scar. I didn’t know how big my scar was or what it looked like at that point, I couldn’t even move my body apart from my arms, not just because of the pain but because of my catheter, a drain in my side, a umbilical catheter on the other side, an ECG all over my upper body, the line in my neck aswel. Combined with the nurses around my bed I felt so frustrated and angry, I was losing patience for the first time through this whole thing and one day after my op that was understandable. Then when I was calming down I had a team of people with a huge machine that scanned the new kidney who wanted to do there job, I thought it would be quick but they were there for a good 3 hours.
When they went I felt even more sick but the pain was subsiding a little mainly because of the morphine pump I kept pressing every 5 minutes, it was brilliant for pain but horrible for making you feel sick and dizzy. I was moved to a private room for a few hours while they cleaned the ward which was nice to get away from it all. Andrea and Kristina were with me and mum was around going from me and my dad. I kept asking how he was they said he was fine bit of pain and sickness like me, but I knew everything went well for him so I wasn’t worried. My uncle mark came round to see us and he was cheering me up with his jokes but I couldn’t laugh because of the pain, all I wanted to do was sleep but there’s so mny people round you it’s impossible. I suddenly felt the urge to be sick and was dreading it because of the pain it would cause. Andrea put the bowl to my mouth and I heaved a few times with no luck because the pain was stopping it, but then it came, I was sick 2 or 3 times which was just fluid and I have never felt a pain so strong it was excruciating and I had tears I my eyes, I kept asking the nurses if my stitches had ripped and my scar was ripped open I was that worried. They reassured me it was fine. I can’t remember much else about that day because of all the drugs and pain. I just remember wanting everyone to go so I could try and sleep. It was nice to see everyone who came to see us but to sum it all up It was awful that day, the worst days though were yet to come.
I woke the next day and felt a little better, still in a lot of pain and discomfort but able to move a little more in my bed, so the nurses helped me get into my lounge clothes, that felt nice. They wanted me to get out of bed and into the side chair, I just didn’t feel ready, they are very pushy, I remember thinking they are only doing there job but unless they have had a kidney transplant they have no idea how I feel. My dad came round to see me, on his feet, walking slow and stiffly but he looked well, his colour was a little off and he looked tired but a lot better than me. He said he ate breakfast and had a cup of tea. I couldn’t believe how well he seemed compared to me, I was quite jealous I have to admit. I wasn’t even thinking of eating I was too scared I was going to be sick again plus I didn’t really have an appetite. I was happy I had a little improvement in the way I felt though. Some of this bit of my diary is a little out of order and not as detailed because I just can’t remember much.
The next thing that comes to mind is my frustration of the limit in movement because of pain, drains, catheters, ECGs etc, the same old from the day before but not as sick. My girlfriend, mum, sisters and dad were all sat round my bed and I was in the chair, we were having a laugh and chat, can’t remember a single thing we talked about really, but it was nice to have them there. That was earlier on in the day. I managed to eat a few grapes and drank lots of water and juice, it felt good to get something down.
Later on when my dad went back to his bed I started coughing, I had a feeling like I needed to cough something up. It kept going on and on but nothing would come out because the pain in my stomach was stopping me from having a good propa cough. As the day went on it got worse and worse and I kept feeling more tired, sick, confused. All types of emotions were running through me. I kept spitting whatever I could up into a bowl, not much. My chest felt heavy and tight and I was getting worried, I had a few doctors examine me then I had an xray machine look at my chest, they came back and said there was a lot on one side of my chest but to keep an eye on me. The nurses give me something to make me feel better and it worked for a few hours.
It got to about 8pmand it started to come back, but worse this time, I couldn’t lie back because my breathing was hard and very shallow. I had to try and sit up straight which was nearly impossible aswel because my abs were so tight and sore. It was a nightmare. I knew mum and Andrea were gonna have to go home and I didn’t want them to, I was scared, they tried there best to make the bed comfy so I could sit up, same with the side chair, but I knew it was hopeless. They went home and I was on my own, I could just about manage to get on my feet as it was so difficult moving from my chair to the bed but I had to keep doing it, I was so tired aswel. For 2 hours I did this getting more and more tired, my legs were exhausted my scar was killing me, I and all the wires tangled around my body, it was just impossible, I was getting upset.
It went past 11pm and everyone else was going to sleep, I knew I couldn’t even imagine trying to sleep, any inch I moved back in my chair or bed and my breathing was so hard and the cough started. I felt like it was getting worse. I told the night nurse to do something a few times, she tried to help with my bed but I needed more doing I didn’t know what but something needed doing because I was becoming so restless and exhausted.
A doctor came to see me from ICU and checked my breathing and said it was worrying and that he would be back soon if I wanted to move to ICU. I didn’t care where it was or where I moved I needed help with my breathing, it was becoming worse and frustrating. The next hour was the same more moving, i kept falling asleep for a brief moment, it was very hard, I couldn’t stay asleep though because when my head nodded off I was woke up unable to breath straight away.
In the end I just stood up and shouted the nurse I’m leaving, I don’t know why but I was so angry and upset and wasn’t really thinking straight. She said wait there and she was going to ring the doctor again. Within half an hour he came back with a bed and 2 porters, I was relieved something was being done. I had lots of belongings around my bed and the nurse asked me what I wanted to do, I said I wasn’t bothered they were the least of my worries. She put a few things on my bed and said my bags and other things she would give to my dad.
They wheeled me off to intensive care and told me to contact my mum to tell her I was there. I text her but it was early in the morning about 2am and I knew she was asleep. By this point I could hardly breathe, no oxygen was getting around my body plus my heart was racing. They tried putting on different masks to help me breathe, one was so tight it seemed to make it worse even though looking back it was probably helping me. I couldn’t stand that for much longer and they put another on which was like a big balloon around my head, it had an attachment which made a horrible noise whenever I exhaled which was a lot because I was breathing so fast. I was so emotional and kept asking when I was going to be sent back to my ward, there’s no way that would have happened with the state I was in I was confused, a nurse explained that to me but I reacted angrily, I wasn’t thinking like me, it was awful.
Then they were putting an arterial line in my wrist, I just remember pain in my arm and lots of blood, seeing how far it actually went into my arm was shocking but I was so caught up in trying to breathe I didn’t care what they did to me. I remember I kept thinking that all these doctors and nurses around my bed were enjoying what they were doing to me and it was funny to them, obviously that was nonsense and they were just helping, that is how weird it all was, combination of drugs, pain, shock I don’t know and I don’t really want to think about it. I remember thinking please get light outside because then my mum would be turning up and she can sort it out, very strange thoughts and visions going through my head.
The doctors left me for a few hours, i think on a couple of occasions i fell asleep but woke up almost as fast as i nodded off because of all the sounds of machines, people, that stupid balloon around my head, i was so angry. The doctor came back who sent me there and had a quick chat and was very worried and said he was going to put me to sleep as in incubate me. I wasnt worried and quite relieved. They lay me back and there were a few nurses helping out, a lot of noise and talking, quite panicky it felt like, i kept thinking they are not actually putting me to sleep there doing something else to me, i wanted to get up. I was cranky, confused, angry, everything. It’s hard to explain how I felt in them 5 or 6 hours I was conscious in intensive care, it’s a feeling I don’t want to experience ever again.
That was the Friday night when they incubated me, two nights after my transplant and that was the worst night yet even more so than the day after my op, or so I thought.
I woke up on my side someone was putting a tube in my mouth I was heaving there was a lot of light, then I was asleep again. This was obviously the doctor taking the tubes out, using a suction to move saliva and making sure I was ok. The next thing I remember was waking up lay on my back, again lots of light with a nurse standing over me saying hello. She was holding a mask to my face and doing something else around my neck, probably injecting a drug or fluid through my line. I remember her saying vividly ‘hello Daniel, it’s Sunday, 1 May you’ve been through a lot the last few day’s’ I was shocked and could hardly believe I had lost 2 days because I knew it was the Friday when I couldn’t breathe.
My throat was very painful and I had a feeding tube going through my nose and down into my stomach, that was the worst feeling having that in my throat. This made it hard to talk so I was writing things down for the nurse. Apparently I was doing this the day before in and out of consciousness with my family around my bed trying to communicate. I can honestly say I have no idea what they were talking about but I clearly was because my writing was all over the same piece of paper I was using now with the nurse.
It all felt very strange just being there. They told me I had gotten pneumonia on my chest because I was overloaded with fluids after my op but that is a necessity for the kidney to work well. I still had a little in the back of my throat but I was able to cough it up through the day. I remember having that tight mask on again for a few hours, it felt a little manageable this time probably because my breathing was a little better.
I suddenly felt sick though at some point in the day and it was after the nurse gave me a load of liquid food through the tube in my nose, she had already given me one lot half hour before and it felt nice in my stomach, then she gave me another lot and it just didn’t settle right. It was so quick the sickness that it hardly gave the nurse time to suck it back up from the tube, she was just getting it ready as i was sick all into the mask, hardly any coming through the side it was so tight. More kept coming up, it was all over my mouth and nose under the mask, she had to be quick getting it off because it would have suffocated me. That was awful, humiliating even.
She cleaned me up and put new sheets on with the help of another nurse. After that i was able to settle a bit and didnt feel sick although i felt very rough, tired and sore but a little calmer than i last remember being.
Mum was there telling me about the last few days, how the doctors left a message that I had been incubated and they left my bags with my dad after they woke him up and said I had been sent to intensive care, she said he was scared something bad had happened to me which was understandable really. It was all a blur that day apart from what I have mentioned, I have probably missed details out but I am noting down what I remember months after.
That night I will never forget, just like the 2 nights before when I could not breathe. Or the next day after my op when I was in such pain and felt sick, those 3 times stand out from the whole experience and I hope nothing like that will happen again.
Mum had gone home, Andrea had been and gone, there were very old and ill people all around me, lots of noise from the machines, which were a battle themselves trying to adjust to. That feeder tube in my throat was causing me so much discomfort I was becoming restless. I was becoming very confused again and angry, like a couple of night’s before but able to breathe a little better.
I kept looking at the clock every 10 minutes no exaggeration. I felt dehydrated but couldn’t drink anything because I had to keep the mask on for it to be effective. The drugs I was on, on top of the dehydration and confusion and emotions were making me hallucinate as I was drifting in and out of sleep, I kept thinking of how grapes were juicy and my family were all talking to me and dancing around my bed amongst other thoughts. It was horrible, I didn’t actually get to sleep longer than about half an hour at a time, I was begging the night nurse to take out the tube in my throat but they had to leave it in. That night was probably on a par with the Friday I was incubated. A horrible experience when you feel like that and have no control over anything.
The next morning the nurses changed over and she said she would take out the feeder tube through my nose, and also the line in my neck. I was so relieved. The mask was being changed as well to a lighter one that slipped off so I could have a drink.
The first to come out was the line in my neck, the stitches were cut off which were holding it in place, I had to tilt my head to the side and hold my breath. It was the weirdest feeling probably I felt in there. It was so long and to think it was sat on top of my heart is scary, the same thing happened with the tube in my nose to.
She took the tube out of my nose as I held my breath and it was a unusual feeling, because it was sat in my stomach it was very long, it seemed to be coming out forever, I couldn’t believe that was in my neck very weird feeling. Not as funny as the line but still unusual. My throat felt so much better especially as I had that first drink, I could only sip though as my stomach was so sensitive. I felt so much better and relaxed more when they were sorted out, I even fell asleep for an hour. When I woke up it was still only half 9 in the morning. The nurses said they wanted me to get out of bed, i was not ready but I knew I had to try.
This was going to be hard but I had to anyway because I needed to use the toilet or commode. I didn’t realise just how hard this was going to be, a few days in bed surely can’t make a person that weak. It wasn’t only being bed ridden, the amount of drugs pumped through my body and fluids oh and the fact I’d had a major operation and my core muscles had been ripped open didn’t help the strength in my whole body.
At this stage I still had lots of tubes and machine wires all over me and it was difficult to move as it was, but I got help from two nurses. The first moment my feet touched the floor and I put a little weight on my legs was very worrying. I could barely stand and I nearly fell to the floor, my balance was all over the show and the nurse was trying to get me to stand tall. There was no chance of that, I couldn’t stretch my abdominals to stand straight, it was impossible and hurt a lot. I ended up dropping into the bed chair and even sitting up straight was so difficult. I felt so weak and drained just from moving two feet and trying to exert a little energy.
The nurse brought me cornflakes and a cup of tea, I tried my best but was scared I would be sick, I definitely didn’t want that pain again when I’m heaving. I managed half a bowl but drank all my tea. I kept getting moaned at to drink more water, I needed to drink upto 5 litres a day as my new kidney was excreting 4 litres most days, I was happy it was working well but drinking that amount was hard work.
I looked round and seen my dad walking to my bed, i couldn’t believe how well he looked. Two days recovery on the ward did wonders for him, he had his drain and catheter took out and was looking stronger, a little off colour but nothing worrying. He sat down next to me and we started chatting, cant remember what about really but it was nice to see him. He said i should eat more and how he felt better when he did, but his recovery was obviously alot quicker than mine, i just wasnt upto his level. I was jealous how well he looked if i’m honest but more pleased obviously.
Intensive care was hard and trying to talk and sit up straight was taking it out of me. I was in a right state, still confused and weak, wasn’t really in the room if it makes sense, no concentration whatsoever, all I kept thinking was get me in the bed. Before that though I had to go on the commode. Can’t remember how long dad was with me but I told him to get back upto his bed so I could go on the loo and get in bed. So off he went and I was relaxed that he felt a lot better and I could concentrate on me getting there.
I was given senna, a laxative the day before at some point because I was really stuffed up on top of the surgical swelling as well, my middle section felt horrible. So not surprisingly the next day I needed the loo. The nurses shut the curtains and give me wipes for me to do the business. I won’t say much but it was very hard to do this and I hadn’t had a lot to eat for 4-5 days so you can imagine, no solids. I shouted the nurse back in and she took it away, then she helped me back in the bed uncrossed all the wires etc, got me comfortable and I fell straight asleep, I was exhausted.
That was the best sleep I’d had the whole time I had been in hospital up to that point, I think it lasted about 3-4 hours. When I woke up I was able to drink lots of water, a cup of tea, a few grapes. Only a small improvement but a defining moment for me.
Mum and Andrea came round again, I was so glad to see them, they got me into my chair again because I wanted to show them I did it. But it was the same again, no strength and impossible to sit up, I was slouched over my table. I think this was the moment I realised just how hard this had been for me, up until that point I had no nerves, worries, doubts or anything but here I was feeling upset. I tried to eat my dinner, I got more down than before, I ate some more grapes and some juice.
After talking with them for a bit, I burst into tears as I was so exhausted and it was so hard to keep my spirits up. I had a good cry and mum and Andrea were keeping my spirits up, we all had a good chat and they was sorting all my bed out and all my rubbish on the table. It was nice to see them and just like my dad earlier on I didn’t really want any of them to go but I needed them to after a short while because I was so tired and needed more rest. I probably took for granted the size of the operation and no one had really told me about the recovery so it was a lot harder than I thought but I knew I was doing well considering.
The next day was exactly the same as the day before, woke up early, had a little breakfast, got into my chair, drank lots of water, had all my anti rejection and other medications. Got back in my bed and fell asleep.
All very similar, didn’t really feel any better, it was a long process. This time mum came round with Andrea and her friend Tracy. It was the same again, nice to see them and we had a good chat. The only difference I felt was I was beginning to feel restless again. This was worrying me and that just made it worse, my breathing became shallow and my heart was racing, all I wanted to do was try to fall asleep. I think this was the worst point of me feeling fed up, I really had enough now and wanted to get back to the ward and out of this noisy, irritating room. I know I wasn’t ready at all for that, but it was just the anger and confusion again really. Tracy gave me her iPod and I was listening to some music, I was falling asleep but waking back up. Not a very pleasant feeling when your that wound up and annoyed with all the machines and wires around you and don’t forget I still had my drains and catheter in, I couldn’t wait for them to be took out.
In the end I ended up falling asleep and vaguely remember mum, Tracy and Andrea saying goodbye. I woke up a few times in the night because of the bed, it was a pressure point bed that moved to stop bed sores, so it does the job but doesn’t help with frustration when your trying to sleep. I settled in the end though.
I think I woke up the next day with a brighter mind, much more relaxed and I actually felt really hungry. This time I ate all my breakfast and drank lots more water. With that came more commode duty. I went on that about 6-7 times that day, because I was eating and drinking more my bowels were working harder and it felt good to flush them out so to speak, it was very embarrassing but it’s nothing new to the nurses so I didn’t feel bad about it.
I was told that because it was the 7th day since my op I was able to have my drains took out and my catheter. I can’t tell you the relief I felt, not only because I could get them out but it meant I could have a shower and a shave. I couldn’t wait.
Andrea came round again on her own this time and just in time for watching me having them took out. First was the catheter, I’m not gonna go into detail with any of this, so that was the first, a strange feeling il say.
Next was the umbilical vein catheter, nice and easy, no pain just strange again but different from the catheter. The next was the bigger suction drain. This was harder, it wouldn’t come out at first because of the vacuum it creates. The nurse did manage to pull it out after some painful moments and it was a lot longer than I thought, weird to think all that was inside my body but none the less, a great feeling to have them out. The only thing left on me was an ECG, that I pulled off myself and a couple of candulars in my arms. These had to stay in obviously for blood to be taken and any drugs still needed to be given or fluids etc. That was it I felt free, my mood went a little happier and I couldn’t wait to have a shower.
The nurse went and got me a wheelchair and took me to the nearest shower in the next ward because ICU didn’t have one. I got off the wheelchair with a massive struggle although better than a few days before. The nurse stayed outside and said to call for him if I needed help, he was worried with the heat of the shower on top of my weakness, pain, plus the fact I’d been bed bound for over a week was going to make it hard for me and didn’t want me passing out or anything.
I told him I would shout straight away if I needed him and I left the door unlocked. He kept shouting asking if I was ok throughout the whole time I was in there just to make sure, that was comforting as it was extremely hard just to do this simple task after what I had been through.
First was a shave, my beard was really thick and scruffy looking and I could not wait to have it off. Then was the shower, I couldn’t stretch and stand upright still because my stomach was still so tight and sore, I was sort of just hunched over, it was really hard to wash myself.
Nevertheless I did it, I had to sit on a shower chair after a few minutes because it was so draining and as the nurse said it was very hot in there and I felt light headed. I was in there for well over 20 minutes, but it was a great feeling to do something like that by myself plus I felt very fresh, that was my first shower in nearly 2 weeks.
I got back into the wheelchair and off I went back to the intensive care unit. When I got there my mum and dad were there. It was the first time I’d seen my dad since he got discharged after a speedy recovery, he was looking well. Mum looked tired but they was glad I had a shower and to see me a bit perkier. We chatted for a while and I was eating more and smiling and generally trying to lift my spirits, suddenly this horrible intensive care didn’t seem too bad and I was enjoying the nurses and doctors company.
I slept better than ever that night and woke up really fresh in the morning. That day I was told I would be going back up to the ward after days of me moaning I was well enough too.
The surgeon who operated on me and dad was there in the morning as he was checking up on me and organising with the intensive care team for me to be put back on ward 9. It was brilliant that he seen me, he was always ringing from his holiday and asking all the nurses and spoke to my mum personally to see how I was after I’d been rushed to intensive care, he is a terrific man Mr Campbell and a great consultant who has helped changed my life really.
Next thing I know I was on my way to ward 9 with all my belongings, my mum and my Aunty Lisa were helping on that day to move me up there, they took some of my belongings home, helped clear everything and got me settled back on the ward. I remember thinking how peaceful it was and how quiet it was compared to where I’d been for the last week.
They stayed for a while, it was nice to be able to chat normally without feeling stressed, confused and exhausted. That night I had a full meal, another shower, watched some films on my laptop and just enjoyed the feeling of everything around me and how improved i was.
I text Andrea to say I had been moved, she already knew of course and said she would see me a little later on. She turned up with her dad Brian, it was nice to see him too. She brought me some juice and snacks. She couldn’t stay long as it was late because she came straight from work. I wanted her to stay that night as it felt too long without her in my bed.
That next day I couldn’t wait to see the team of doctors, as I knew there could be a chance I would be able to go home. It had only been one night back on the ward but I stayed longer in intensive care because there wasn’t a bed ready for me for 2 days, this gave me extra time to recover.
Eventually they came round and after some begging and putting on a brave face I convinced them, well I’d like to think I did but it was clearly because my bloods, fluids, condition, everything really, had improved dramatically. I was so pleased and told Andrea and my family straight away.
Andrea came round and we had to wait for the chemist to sort out my medication, anti- rejection, immuno-suppressants, blood pressure tablets etc, there was a lot that I had to carry on taking to support my new kidney. After a few hours I was able to go though.
That first walk out of the hospital and to the car was the hardest thing I have ever had to do. I should have used a wheelchair but I was adamant I could do it and wanted to ease my body back into walking. I did it anyway and when I got home it was the best feeling I had in a long time, to see all my family there and just to relax in my house.
Over the next few days I seen friends and family and told them about how I was feeling and how it was in the hospital. It was good to share mine and my dads experience. I had to drink up to 5 litres of water a day to hydrate the kidney. I also had to measure the out put every day. It took me a further week to really get any strength back in my legs alone so I could walk.
It wasn’t easy but I felt a lot better to be able to improve whilst I was at home. Taking the medication hasn’t been easy, the side effects are a battle themselves, really bad shakes all over my body, head aches, joint pain, stiffness, light headed, feeling sick. That was just a few, but as time has passed they are easing off a little.
I was still back at the hospital 3 times per week for the first month, that was hard again, I had to have blood taken, urine tests, blood pressure, see the doctors, they changed my drug levels a few times, to make sure my new kidney was getting all the help it could get.
I ended up back in hospital for a few days because one of my levels was too high, meaning there was a chance of rejection, that turned out to not be the case and it was to do with one of my drugs.
I’ve had a few scans and other tests done since I left the hospital for various reasons all surrounding my operation and transplanted kidney. The whole process is hard and it’s been a long one. No one really explains the after care needed or the problems I could face after the operation, they only used to say I needed a transplant. That’s fair enough but it’s something I had to experience for myself.
4 months since I had my procedure, my dad went back to work and was feeling great which is brilliant. I needed to have a stent put into my kidneys artery to keep it open. It was showing signs that it was narrowing, this was a straight forward procedure and something that needed doing for the sake of my kidneys life span.
I have been extremely lucky to have all my family around me and my friends as well. My mum has been the best throughout the whole experience, she has had a bone marrow transplant herself and knows how to deal with it all, she’s the best mum anyway but this just showed me how lucky I am to have her as my mum in my life, she is always there for me, I love her lots and I will never forget it.
Dad handled it all very well, he didn’t have to put himself through that but he did for me and I am forever in his debt but he knows how much I am thankful, he has given me the gift of life and I love him very much.
My sisters Gemma and Kristina have been really supportive too and I am lucky to have them they visited me nearly everyday and brought me clothes and food and were always texting me to make sure I was feeling ok, I love them lots.
My Aunty Lisa was brilliant too, my mums friend Tracy was great, other family members and friends, even Andreas mum Joyce and her sister Kay all visited me, lots of times I was asleep or too ill to talk but they all made the effort and that’s amazing. I am always going to be thankful to them and love them all.
Finally my fiancee Andrea, we have been together 6 years but what she has had to put up with in that time with my health and how it affected me and our relationship just shows her character and why I fell in love with her straight away, she is the best thing in my life and someone I want to be with for the rest of my life, she is my best friend and I know she is always there for me as I am for her. She has also given me a beautiful little girl called Amelia and my life feels complete.
My future now is very clear to me and with the way I’m feeling in this time after just shows why this has been the best thing I could have done for my life.
The average life span of a transplanted kidney is 10-15 years, some people don’t last 1 year, or 5, other people last a lot longer, the record at my hospital is about 35 years.
I know realistically that one day I will have to go through this again when my dads kidney eventually does fail as transplanted kidneys don’t last forever unfortunately, I’m hoping it won’t be for a very long time yet, and who knows maybe in the future with scientists discovering new things everyday, there could be a revolutionary answer to renal failure, let’s hope so.
I have been given the gift of life and by taking my medication everyday and by always looking after myself the best I can, I am going to live my life to the fullest and do everything I can possibly do, raising a happy, healthy family and providing for them is all I have ever wanted.
Some people are not so lucky and never get a transplant or are waiting years for one, having to go through dialysis 3 times per week or in some cases every day for hours on end, they don’t have a life. I am so very lucky and wish to thank everyone involved in my experience. Doctors, nurses, family and friends, especially my dad for his kidney.
I wrote this short story for myself to look back on mainly but for anyone else that wants to know how I feel about the whole thing and hopefully to raise some awareness for living donor transplants and the experience from a living donor recipients point of view, I am proud of myself and my dad for what we went through, I am still only 29 years old and can’t wait to seize my future, after all I was given the gift of life!”
Daniel Bailey