Normally I write about photography and not much else but a friend of mine convinced me that I should keep a diary of something very important to me. If you are a regular visitor to this site you may be aware that I was due to have a kidney transplant and I wrote a little bit about this 2 or 3 weeks back. I am now in the post-op stage and I want to write more about my experiences in the hospital and beyond as the treatment ensues.
- To raise awareness about Kidney Disease
- and the treatment that is available to help people lead a “normal” life
I cannot offer much advice on Dialysis because I have never had to go on a course of it. My condition was preemptive which means it was picked up early enough to plan ahead for a transplant. Having said that if my condition had suddenly slumped furthermore, I would have had to undergo dialysis.
The article that follows spares very little on the gory details, so if you are squeamish (like I was a month ago), please still read on!
About 5 years ago I discovered that I had a condition known in medical circles, as FSGS (Focal and Segmental Glomerusclerosis) which can be identified under a microscope after performing a biopsy of the kidney. It causes scarring of the “Glomeruli” which are tiny filters within the kidney, their purpose being to filter the blood to make urine. Thankfully it was identified in the early stages and through dietary changes we were able to delay its progress but in the end it started to show signs that it was beginning to gain momentum. A decision was made to work towards a full transplant and to by-pass Dialysis if at all possible. This was perhaps the most frightening day of my life! I had to simply accept it.
At this point my Consultant Dr Andrews introduced me to the Renal Unit at St Helier Hospital in Carsholton and their fantastic team there. Transplant work-up is designed to help people come to terms with a sudden change in their life and to educate them in what a transplant actually means for those that require one. I met two fantastic nurses at this stage who have guided me through the whole process and have been there every step of the way and I couldn’t thank them enough for all the hard work they have put in, not just for me but for so many other people who are going through the same process. Their names are Christina Ho and Kirsty Archer and they have been utterly fantastic.
Initially I attended a presentation morning about Dialysis as they felt that I should know about it even if I don’t need it but you can never predict how things would turn out at this stage. It was a very interesting morning and we met a lady who had been on it for 20 years, who also had had about 5 failed transplants. We were then shown around the Haemodialysis ward to meet people currently dialysing. This was quite harrowing at this stage, as they all seemed quite comfortable being plugged into these machines with their blood circulating around lines and their Fistulas did, I have to admit, strike the fear of God into me. I was humbled by their courage and how they had come to accept their regular dialysis sessions as a fact of life, part of their weekly routine. I felt guilty that I may never need to worry about it, I stood a good chance of skipping straight to transplant. We were also taught about another form of Dialysis called Peritoneal Dialysis and this is the one I opted to put down as my choice should I need it. I later met a consultant to discuss how the operation would work. He told me about how a catheter is inserted into the wall of the stomach, into which the apparatus needed could be connected to drain off fluids and to then replace them with fresh fluids. A process that would have to be repeated around two times a day and takes 20 minutes each time. He then asked me if I wished to book my operation! I declined thinking, “I don’t need this, I am going to have a transplant!” and he was fine with this!
One night that sticks on my mind, was the transplant evening at St Helier that took place in the Lecture Theatre. Surgeons talked about the operation process including the man who would later be my very own Surgeon, Mr J Fronek (from the Czech Republic) and Mr R Chang. Followed up by talks by both Donors and Recipients including the Spensley family who had featured in the National Press after their twin daughters’ kidneys failed. Their parents both donated them a kidney each and Mr Fronek was their surgeon.The entire family was there to talk about their experiences and I was inspired by their courage and humility. They were followed up by a man who had received a cadaveric transplant, who had really been through the mill, his operation was complex, the kidney didn’t work at all to begin with but with some emergency dialysis, it eventually kicked in. He now leads a normal and active life. He also spoke about the “Transplant Olympics” that he had taken part in the previous year over in Canada. I must do some research into this, as I would be interested to support it or maybe even take part in it if I can!
After this the race was on to find me a donor. My Brother, Dad, Mum and my Wife Tina put themselves forward as prospective donors. In the end my Dad passed the tests and the decision was made. We both met Mr Fronek to discuss the surgical procedure and the preparation that we needed to undergo in order to be “fit” for it. Basically we both had targets to met in terms of weight loss and stabilising our blood pressures. I had a problem with high potassium levels that needed to be addressed. The date was also set during this meeting to the 17th September 2008 and then it all became a concrete certainty, a reality and we felt a mixture of emotions ranging from fear to excitement all in one go. It was quite strange but we were glad that the date was now set and that we could make arrangements to take time off work and Dad had recently retired. The ball had started to roll and the medical team stepped up our prep.
So lets now roll forwards to the 15th of September and begin the diary….
An early start for Dad and I as we head for St Helier hospital to have our final cross match test. Dad picks me up at 7am and we travel alone to the hospital, our journey just beginning. A cross match is basically a blood test, a large one, in fact bigger for the donor than the recipient. The bloods are then mixed together in the lab and are tested for compatibility. Since Dad and I share the same tissue type and blood group we know that the results should be fine, especially as the same test had been carried out successfully many months before. We arrived for 9am, the tests were swiftly carried out. We were introduced to some people including Wesley who was about the same age as me (I am 36) and his donor was his father in law, he had received his transplant some months before. We had a good chat about it all and I found him to be very reassuring and happy with how his treatment had been. I have been inspired by the many people that I have met along the way, they are all special and brave!
We also spend a little time with Christina Ho, our ward nurse Ty and Dr Marsh (Clinical Director of the Renal Unit) with a little bit of a Q&A session, to make sure we were fully prepared for the next few days.
At around 5pm later that day, I receive a call at home that the cross match had failed due to equipment failure. We had no option, we had to go back to St Helier for 9am the following morning, the same day we are due to check in as St Georges. This was indeed a setback and we hastily change our plans!
Cross match repeated and done as swiftly as possible, bloods are couriered away as soon as we are done! We kill time in the restaurant at the hospital and mooch around South West London for a few hours…
Check-in at St Georges and the whole thing becomes extremely real, Dad, Mum, Tina and I go through various emotions in our minds and we start to meet, one by one, our Doctors and nurses who will be taking care of us plus the Surgical team headed by Mr Fronek. Various tests are carried out, consent forms signed, medicals carried out, final X-Rays and ultrasound tests completed. We have truly entered the system and both Mum and Tina stick around to make sure we are ok. Finally we are introduced to our wards and our beds. The time ticks by very fast, as afternoon turns to evening, Mum and Tina head home and then Dad and I are on our own. Its a very emotional time. We venture out into Tooting to find a Pub to have a final drink some food and to catch up with my Brother, Tim. We have a nice meal, a good evening with some nervous humour thrown in for good measure to keep our spirits up. We bid Tim farewell at the Hospital after showing him where our ward is and we both retire to bed. In separate wards, as they keep us apart for emotional reasons. Strangely I sleep like a log and wake up around 7am the following morning.
We are woken up and hear that we should be going down to Theatre at around 8:30am. Its interesting to note that they perform Live Kidney transplants on Wednesdays, once every two weeks and they perform two operations on the same day. By this point we have met our fellow transplant patients who be waiting till the afternoon. We wish each other well and prepare ourselves for what would be the most major operation either of us have ever had. My Dad has had a back operation in the past but I haven’t, tonsils doesn’t quite count!
One other thing – I start to take my Tacrolimus drugs this morning and feel quite weird about it, as I will be taking medication of this nature for the rest of my life. I suddenly feel like a transplant patient!
The rest of the day starts to go by swiftly and I have very little time to contemplate anything. I see my Dad has gone down to Theatre at precisely 8:30am and all I have to do now is wait. They first have to carry out a “visual” on Dad’s kidney to make sure all is what they have been expecting. So I had quite a wait. But wasn’t long though before I am collected, my bed is wheeled off through the labyrinth of corridors, up in a lift to the Theatre waiting area. I am greeted by the anesthetist who is a very nice lady, she explains it all and I wait a little longer and by now I have been transferred to my trolley. Its strange to think that just through the other side of the wall, my Dad is undergoing major surgery but I try not to think about it. Soon the ODP is whisking me at high speed down another corridor to the Anesthetics room, which is tiny and crammed full of instruments and other apparatus. It all seems very strange but I feel calm as the Canulas are inserted into my hands, the gas mask placed on my face, a jab in my hand…………..
What seemed like a second later, I come round not quite realising that the time was now about 4pm in the afternoon. I later hear that the operation was successful but trickier than anticipated but at this stage I am glad to be alive and breathing. The recovery room seemed like heaven, it was a mass of activity, staff appear to be floating around like ghosts, a bit like I have been given a thousand LSD tablets, the whole world was gradually shifting back into a bleary focus. Nothing seemed real and then I am being whisked back through the hospital, the light filtering in through the windows and I can feel a massive grin breaking out on my face. I recognize the ward as I enter it and people’s faces look familiar yet surreal, dreamlike. I spot two familiar women sat around a bed occupied by Dad, God I hope he is ok! The first thought I had was for him and not myself, I was as high as a kite, with morphine rushing around my veins like a mad bull at a Spanish Fiesta. Finally I was re-introduced to my slot and my ward. Things were beginning to calm down. Then the two familiar female faces were beside my bed with some Doctors close by, nurses adjusting my drips, checking the machines. I have no time to be freaked out, I just have a monumental grin on my face. I can clearly remember that! The familiar faces are indeed Mum and Tina and I hear their voices speak the words, “Dad is fine, he has come around, the operation was a success and you are weeing normally!”. I begin to look around and see that I am on a catheter, as I knew I would be, plus a myriad of other lines. I am also wrapped in dressings and there is a strange tank thing to my right which I later learn is a drain to expel excess fluids forming on the surface of the new kidney, its full of a diluted bloody fluid. I don’t care at this stage! Morphine! I press the button as instructed by one of the very attentive nurses, I do as I am told and press it once more as if I need to get the hang of it. I feel no real pain, just pure unadulterated pleasure for being alive and for the fact that the worst, most risky part had passed by successfully.
What happened beyond this? No idea I slept the rest of the day!
September 18th – The morning after!
I am a lot more compus mentus today but totally bed bound and I start to eat foods and take on water through a straw!! However the effects of the general anesthetic are still burning off and I feel very sick. So a bit of a struggle and my voice is very feint. All of my immediate family members visit during the afternoon and bring in bits and pieces for me, books to read and some fresh fruit which is all very welcome. I struggle to speak whether this is is because my strength is a bit sapped or something, I wasn’t too sure but I am glad to be communicating with people close to me again and some clarity is beginning to return to my mind. I start being violently sick and that is pretty much that.
Today I make it out of bed and to my bed side armchair. Its painful, my lower abdomen feels numb and I have lost some sensation in my right leg, something I had been warned about before. However its only in my upper thigh and I manage to stand up straight. I am of course assisted by two nurses holding me underneath my armpits and they slowly withdraw their hands to allow me to stand for a moment unassisted, you wouldn’t believe how great this felt, my first step towards freedom, a new lease of life and full fitness! I grinned broadly and the nurses applauded me! I hobbled over to the chair aware of the fact that the nurses were lifting up my tubes and lines to make sure I didn’t get tangled up or accidentally disconnect myself from anything (which did happen at one point later on, ouch). I was then given a bowl of warm water and a flannel. I had a wash as the curtains were drawn around my bed for privacy. I also cleaned my teeth which also felt incredibly good.
I still hadn’t seen my Dad at this stage but the nurses were passing messages back and forth between us. I was glad to hear that he too had made it out of bed much the same as me! Go on Dad, show them us Lewis’s are tough!
This was followed by a breakfast and my morning concoction of tablets, including Tacrolimus the main Immunosuppressant drug that breaks down the immune system to allow the new kidney the chance to settle in and do its job.
Dad ventures over to see me and I am bloody delighted to see him!
Then the Doctors do their rounds at around 9:30am which becomes the pattern for the remainder of my stay in St Geoges. Mr Fronek is pleased with my progress but concerned about my sickness the day before (which comes back to haunt me later this very day) and they decide that I should be given some medication for this which can be fed into one of my IV lines. I am also delighted to see Mr Fronek who is a very slight man and probably about the same age as me I would guess. A very talented guy, even more so for having gotten Dad and I through this! He is also a very nice person too with a great way of dealing with people. I am very impressed by his professionalism.
I am starting to get to know my ward mates, the guy opposite me comes from Aldershot which is very local to me, his name is Paul and a very nice chap too. My “next door neighbour” is Ronald who is blind and has various other complications with his health. In the corner is a real character, a man called Hastings who as far as I could tell had suffered a stroke which had caused some communications difficulties, he speaks a foreign language which I can only guess is possibly Afrikaans, not sure! In the other corner is a young chap but he is later discharged to be replaced by a man called Phil who is very poorly indeed but communicative.
My Mum and Tina visit again along with my Brother a little later. I am more communicative with them but start to become sick again and I won’t go into this as it was probably the worse experience I had whilst there, worse than the operation itself.
Family friends Carl and Gill accompany Mum, as Dad is now going home! Its great to see Dad on his feet too and wearing normal clothes. They bid me farewell and they are off.
Its worth noting at this stage that the pain isn’t too bad and I am still on the morphine but not using my button anymore, the basic dosage is fine for me. I am a little sore though. I am also more aware of the catheter but the less said about that the better!
The day ends with a vomiting volley, half a dozen changes of my bedclothes and a very restless night follows. I am threatened with having an endoscopy performed on my stomach as I appear to be throwing up some blood – euggh!
September 20th -Saturday!
I awake feeling a whole lot better, the sickness has gone and the Doctors decide to hold off on the endoscopy but if it kicks off again, they will have me down in the Theatre in a flash! The Placebo Effect seems to kick in at this point as I am not sick again for the rest of my time in Hospital!
I shall whisk through this day, as a load of things happen!
At last I am disconnected! No lines, all taken out with only one Cannula left in my left hand. The drain comes out and strangely this doesn’t hurt it just feels very weird. All that remains is the Catheter and this comes out a little later with some difficulty as it got stuck. I think it best not to go into graphic detail on this one, as its a bit personal for publication! So by 10am I am totally “unplugged” and the Physio comes to say hello.
I am making my first walk through the ward and heading for outside to take in some fresh air. Tina arrives and we smile broadly at each other with tears of joy, as I am WALKING! I am a little tender, very stiff but the pain is tolerable especially considering that I am now off the morphine. We head for a set of steps outside and I take a a few up and downs. It seems fine, I am as I say quite tender but I manage it with relative ease and as we head back in doors the nursing staff all praise me for making my first steps. I return to my chair and Tina and I have a great chat, I am feeling very good, more with it than the previous days and better still my appetite is back, I am eating quite well and its staying down. Its also great to be using the loo again like a normal human being!
I also ditch my hospital gown in favour for my own pyjamas. There is a little seepage from my surgical wound, a mix of blood and fluid and my dressings are changed.
Sunday 21st – Will I go home today?
I quickly learn that I won’t be going home today, as my creatinine has gone up. Not good. At least I am now getting out of bed and walking around more plus I have my first shower since the operation and the cannula comes out of my hand and the dressings come off. They squirt me with a liquid that helps disinfect the wound and protect it from further problems.
Monday 22nd – Biopsy
Today I have a biopsy, not a pleasant experience but necessary. I have to lie flat on my back for 6 hours and this is very uncomfortable as I need the toilet!! Thankfully by the time Tina visits later in the day I am free t get up and move around. I have the biggest wee ever.
Tuesday 23rd – I go home!
The biopsy results are delayed and my patience becomes frayed. Tina comes up for 3pm with our friend Dave. Dr Daniel Jones chases up the lab for results and announces that I am free to go home but their findings are a little concerning. I appear to have borderline rejection but it can be treated and turned around.
My journey home is great and its so great to see my house, family etc!
I decided to wind down the last few entries despite the fact a lot of things happened, I just can’t quite remember them clearly enough! So here are a few things to finish this article off with:
- The staff at St Georges were fantastic – I would like to thank Dr Jones and his team for their hard work and support. The nurses who work incredibly long hours, quite often 12-14 hour shifts.
- The food was actually ok once I got to work out that rice was better than the potatoes!
- I never really felt too scared, as the team guided us through every step, explained things meticulously and reassured.
- I did get bored towards the end, as the weekend was fairly quiet but I had a good supply of Outdoor Photography mags!
- Last of all I I cannot thank the Surgeons enough, Mr Fronek did a brilliant job and I will never forget that, I know you do a lot of these operations and its routine for you but you deserve all the praise under the sun! You are a great guy! I hope you stumble across this blog 🙂
Well I am back home but early the next day, I have to go back to St Georges, more in the next post!
Blimey can’t believe I have just written 4119 words!
This article is copyright of Nick Lewis but is available for publication with my written consent!