30/10/08 - bye, bye tessio line

'Well this'll be the last time I do this with my line in' was a thought that frequently went through my head as I partook in everyday activities from having a shower, going to sleep or checking my email in the days that led up to the removal of my tessio line. It's funny how you can get used to something quite quickly which is so completely alien to everyone else.

Back in 2003, I had a tessio line put in for about 6 weeks for a spot of hemodialysis before I was to start peritoneal dialysis and I remember the procedure to remove the line being quite traumatic with a lot of 'tugging' and pain. So in a frantic voice I warned the nurses when I got to the hospital that my current line had been in for 2 years so I was certain all the tissues will have 'grown round it' and it was going to be an absolute nightmare to remove. They looked at me as if I was slightly mad and then suggested that if I was that nervous I should have a general anesthetic and stay over night in hospital. I politely declined and promptly sat down deciding to keep my worries to myself!

On the phone to the admissions department the day before I had been told that the procedure was to be done in a side room in the day ward, but if anything went wrong I would be taken down to theatre immediately. 'You mean if an artery is severed or something?' I asked whilst laughing nervously. 'Something like that' was the deadpan reply. Eek.

After a 3 hour wait whilst I occupied myself reading trashy magazines the surgeon finally turned up to remove the line. I was pleased to see he was one of the guys that helped with my transplant and proceeded to quiz him with about a million and one questions about what it was like and how gory it was. I think he thought I was a little strange... Anyway, I really needn't have worried about the actual procedure as after the local anaesthetic was injected in (sharp intake of breath) I barely felt a thing, just a slight bit of pressing but I couldn't believe it when the surgeon dangled the line in front of my eyes four minutes after I had entered the room. I was shocked at the length of it and excitedly asked if I could keep it to show Oli and take a photo of it. This was just too much weirdness for the surgeon who said I could skip the 20 minute lie down that I was supposed to have after the line removal and go straight home. Unfortunatly one of the nurses saw me trying to sneak out of the ward, and marched me straight back to the room (we compromised on a ten minute lie down.)

Me just about to enter the procedure room...

I was so impressed with the scar too - just two tiny dots, a world away from the 2 inch scar above it from when the first line was removed. It even looks like a snake bite. Even better.

The whole experience reminded me how much medicine advances in such a short space of time
- even though it was a small procedure, the changes they had made made a massive difference to me. Makes me wonder how transplants will be done in five or ten years time...will they be growing kidneys out of people's own cells by then? Or will they be able to produce man made kidneys? Or best of all will more people be on the donor list making the wait for organs virtually nothing...?

Sign up here.

28/10/08 - 11 days post tx - a weekend in pictures

Almost as soon as I had got home I reached for the kitchen scissors and chopped my hospital name bands off. After spending so much time in hospital in the past few years I almost started to feel slightly owned by them - especially when they insist on dressing you in gowns imprinted with the colourful pattern of the words 'property of the NHS'. Like I'd ever take one and add it to my wardrobe!

I received lots of beautiful bunches of flowers from people - the ones above are from my Aunt Sara in Canada, and the ones below (and the cute teddy) are from my Grandma also in Canada.



Above is a photo of me standing at the end of my road after my first 'walk'. When I say walk it was more like a stagger up the road and back again but it was a beautiful sunny day and I felt that even getting outside for a bit was a little achievement.

Oli was staying with us for the first week after I got back and we had a lot of fun playing on rockband (or until I nearly burst a stitch getting too over ethusiatic on the drums) Oli was a natural at singing and basically put the rest of us to shame.

On the day after I came home from the hospital Oli's family came down to London for a couple of days which was lovely - I hadn't seen his little brother in 9 years, or even met his little sister Eva, yet! So whilst they headed into central London for a day of shopping fun I kicked back and relaxed and tried to think healing vibes!

27/10/08 - 10 days post tx - 1st clinic and tessio lines

I joined the long queue of people at the post transplant check up clinic at the hospital today. I was bizarrely quite excited about my first appointment - I had spent the weekend literally waiting for something to go wrong and craved the calming words of a Doctor telling me that Kasper was ok, and still happy in his new little home.

After I was shown round the clinic and taught how it works (weight and pulse first, followed by bloods then a trip into the consultant's office) I sat down on a plastic chair amongst all the other patients - some who had transplants days before me, some years before, and then I waited. And waited, and waited and waited a bit more. After about two hours I was finally seen, apparently this kind of waiting time is normal for these clinics. I actually hadn't been to clinic in a couple of years, my dialysis consultant kindly gave me his mobile number and whenever I wanted to see him I would just give him a text and meet him for a chat at dialysis. Pretty handy.

The consultant I saw assured me that everything was still right on track, though he was suprised I still had my tessio in (a line in my chest used for hooking me up to a dialysis machine.) Apparently I should have had this removed whilst in hospital but he thought they must have forgot. Oops. So in his most excited, about to give a present to a child voice, he said 'well, great news you can have it out in a couple of days! Isn't that fantastic? You'll be tubeless!'
I think he was a little surprised at my unenthused answer. Not the usual response you'd expect from someone who had had various tubes in their body for the past few years.

On one hand, being tubeless for the first time in five years was an amazing prospect...I could shower without worrying about infection and wear low cut tops once again...but on the other hand it did scare me a lot. Funnily enough I had actually got so used to having it, that it seldom bothered me. I guess you could say I was almost fond of the little guy, he kept me alive after all.

I was, of course, a little nervous about the procedure but the actual fear really came from the fact that I saw my line as a bit of a safety net - it was a comfort to know that if Kasper did decide to fall asleep for a bit, going on dialysis wouldn't be too much of a big deal...or at least that's what I was trying to convince myself. To me removing the line opened up a whole new can of worms. If anything did go wrong with Kasper I'd have to have an emergency line fitted followed by painful surgery to fit a permanent one. I've always lived on the side of caution when it came to kidney stuff and so by the Doctor telling me that they wanted to remove it in 3 days time I was a little thrown, it seemed quite a big step into normality, one I wasn't sure I was ready for...

Opt Out?

After doing a lot of campaigning for the opt-out system to be introduced at the beginning of the year,  my first reaction when I saw the headlines in today's papers declaring that the Opt Out system was not going to go ahead just yet, was of disappointment and also sadness to those who are still waiting for an organ.

It is a great shame that the UK cannot straight away become an opt-out country especially since research showed that a high percentage of the population support the campaign. One of the things that makes me most sad is the fact the at the moment there is physically not enough theaters or surgeons to take on the sudden increase in transplants that would occur if opt-out went ahead. To put it simply the hospitals are just not ready for opt-out yet. As the head of the Kidney Federation said on the radio today; sadly a donor card carrier may pass away in a hospital with no transplant facilities or be too far away from a hospital with the right facilities, not allowing him to be a donor. Obviously this problem will have to be combated before the government can reconsider opt-out. 

 There are also still so many misconceptions that are floating around when it comes to organ donation and it never fails to shock me when I hear them. There is a distinct lack of education about organ donation in this country - a lot of people just don't seem to understand what they are even signing up for let alone what would actually happen after they died. As I have always maintained it is also a massive taboo subject - nobody wants to think about or talk about death - which is why organ donation should be promoted in a positive light showing it as an amazing footprint to leave after you die. Charities such as Live Life Then Give Life are doing just that. 

Before he died aged 25 earlier this year, Adrian Sudbury, a true hero, started a campaign for schools to educate all 17-18 year olds about organ donation and also bone marrow donation. Just before he died, this campaign was approved and letters went out to every school this year with information packs enclosed. Campaigns like this - especially to young people - will definitely increase the numbers on the organ donor list as the teens will surely bring this topic up to other friends and their family provoking them to think about it. After all, word of mouth is one of the most powerful forms of advertising. 

Whenever I see organ donation brought up in the press - even if it is negative - I always see it as a good thing as it gets people talking and thinking and hopefully signing up. 

23/20/08 - 6 days post TX - home sweet home

The doctors came round on their usual rounds at 8am and announced that they thought I was well enough to go home. By about 8.15 I was washed, dressed, packed and sitting on the bed ready to go, before they could change their minds.

packed up and ready to go...one of my many bags

After a few meetings with the dietitian and pharmacist Oli and my Dad arrived to collect me and drive home. It felt fantastic to be able to walk through the doors and breathe 'fresh' London air after being cooped up in hospital for over a week.

last photo in my hospital 'apartment'

Fresh air! At last!

Despite the fact that I was ecstatic to be home I was also pretty nervous about being in charge of myself, looking after the wound and getting my head round all the new medicines that I now had to take. I knew how frighteningly important they were to prevent rejection and was terrified of forgetting to take them at the specified time. I also couldn't really get out of bed without the help of the electric sitting up gadget on a hospital bed. So I wasn't really sure how I would cope.

Over the 5 years I had been on dialysis I had grown to understand and know my body extremely well. Every little pain or 'weird' feeling I could diagnose exactly what it was from when my parathyroid gland was playing up to high potassium. Leaving hospital with a whole new organ inside me meant new feelings, aches and pains that I no longer understood. It was pretty scary.

In hospital I had the twice a day blood tests to reassure me that Kasper wasn't going to do a runner that day, at home I had nothing like that. Paranoia fully set in and over the next few days every little strange feeling or ache I had I would panic. What was Kasper trying to tell me now? Is he unhappy? Have I done something to upset him??

I had to learn to relax a bit and not spend every second of the day obsessing over my new body part. Luckily I had plenty to occupy me - many friends came to see how I was doing over the next few days and Oli's family also came to visit, which was lovely.

Anyway despite the Kasper fueled worry, there's no place like home.

22/10/08 - 5 days post TX - moving house, byebye catheter and freshly washed hair

After a night on the ward sleeping next to The Loudest Snorer in the World I was finally rid of my catheter which I had literally began to hate. The amount of times the tube got caught up on chair legs or nearly tripped me up was ridiculous. Also having to lug a bag of wee around at all times was neither cool or stylish. But as I have said before you lose all dignity in hospital...and anyway I was secretly proud at what a fine job Kasper was doing.

So without my catheter weighing me down I was able to have my first catheter free shower which if it hadn't been for the icy cold water it would have been quite a pleasant experience. Chilly water aside it was good to have clean hair. My hair over the past few days had somehow started to resemble a greasy helmet. So not cool.

After having very little sleep the night before I thought I'd try my luck and asked in my nicest and politest voice if by any chance, please, that there was possibly, please, any way that I could be moved to a quieter ward, please? And to my disbelief the nurse moved in closely to me and hushed 'there's a private room to my right. It's empty at the moment, but not for long. If you are quick and put your stuff in there - it's yours.' Suddenly I wasn't aware of the 54 stapled wound and was shoving my clothes and dvds and numerous cordials in to bags as quickly as possible. The room was mine! En suite, a window with a view in to the hospital garden and best of all.....a TV! That night as I kicked back to Neighbours I got my first taste of normality....and a good nights sleep. Fantastic.

The new pad

Oli watching the magical TV

hangin' in my new abode

21/10/08 - 4 days post TX - walkies, mac 'n cheese and moving wards

With the help of the nurses I conquered walking around the whole renal block today, I even got a little tour of the theaters. Very exciting. Tiring and painful as it was, it was also incredibly liberating after being stuck in the same room for days.

looking very pleased with myself after the walk

The Doctors still seemed to think I was doing very well as they freed me from some more lines and cannulas and moved me down to another ward - I even got to skip the general renal ward and went straight to the day/short stay ward which was awesome (there tends to be a lot of crazies in the general ward...I avoid going there at all costs.)

packing up my wash bag, ready to go to the new ward

I even upgraded myself to choosing a proper meal off the hospital menu - macaroni cheese and sweetcorn. Perhaps it was the fact I hadn't eaten anything proper in 4 days, but I thought it was absolutely delicious and polished off the lot.

mmmm

Meanwhile, Oli was recovering nicely at my parent's house and being entertained by my little brother, Will.

Oli and Will looking fascinated.

List of lots of meds which I am having to follow closely.

20/10/08 - 3 days post TX - Bambi walking, marzipan and cathater handbags.

I was promoted to the next level of kidney recipient today, as I managed to sit out of bed all afternoon, go on a little walk with the help of two super nurses (doing my best Bambi impression), eat another soup based lunch and best of all I was even upgraded to a pink hospital gown! Fancy.

Catheter handbags. They're all the range doncha know?

Still looking mega puffy. Don't think the gown is that flattering either to be honest...

Oli was doing really well too - so well that to my surprise he was told he could go home today and rejoin normal life. No more cannulas, needles or sadly for him, IV paracetamol. Oli and I both grew very found of our six hourly IV paracetamol and even started craving it...probably not a good thing! Before Oli packed up his suitcase and put on trainers for the first time in 4 days his lovely Grandparents came to visit - all the way from Leicester, and we had a nice afternoon chatting to them.

Yummy treats from Hannah - lemon tart and a Milo marzipan cat.

After Oli was collected and sent back to my parents house to re-cooperate I was all alone in the hospital for the first time in days. It felt really strange without him but luckily I was kept occupied by plenty of visits from family and friends and of course the almost hourly bloods, doctor poking, drug taking and wee measuring...

19/10/08 - 2 days post TX - tomato soup, sitting out of bed and the big weigh in

I totally forgot to mention in my previous post (think I was blocking it out to be honest) when I listed all my lines and tubes I was attached to, that I also had a drain tube next to the wound on my tummy - it drains out any excess blood or fluid. It was only a small tube so I didn't panic too much when the Doctor informed me that it was time for it to be taken out. It was only a thin tube and so I thought although it wasn't going to be the most pleasant experience I'd ever had it wouldn't be too bad...boy, was I wrong.

The nurse snipped a little stitch which was holding the line in, and told me to take a deep breath. I presumed she was going to slowly and carefully prise the tube out...but noooooo, with both hands she yanked the tube out as hard as she could and I think the patients in the ward downstairs will have heard my scream. The line was roughly about 8 inches inside me and as she pulled it out pain shot through my body like nothing I'd ever experienced. I promptly burst in to tears and couldn't even speak afterwards. The pain subsided a little after a few minutes but I was fairly in shock at how little warning I'd had, however perhaps if the nurse had told me beforehand 'oh by the way, this'll be the most painful thing you've ever felt' I may not have been so obliging to have it done in the first place....

After I had recovered a little, the nurse give me a wash (I swear you lose all dignity in hospital) and then slowly adjusted my bed so I was in a sitting position She then helped me swing my legs over the bed and gently stand up. This whole process took about fifteen minutes as I had been lying down for so long my chest needed time to readjust and I felt really out of breath for the first few minutes. Once I was out of bed though I felt so much better, and like I was actually on the road to recovery.

First time sitting out of bed - woo!

Lots of cannulas

The Doctors all came round, and my results were still looking great which I breathed a big sigh of relief about. I was still suffering from extreme paranoia about Kasper packing up and not only was I worried for myself I desperately didn't want to let Oli down. So when they told me my creatine was down to 90 I was ecstatic. By this time I had been pumped with quite a lot of fluid, but I was producing so much wee that I didn't really feel that heavy. That coupled with the fact that I hadn't really eaten anything in the past few days I thought I might have even lost a little weight. So when the nurse helped me sit in the weighing chair and my weight came up as 8 and a half kilos over my dry (pre dialysis) weight I almost passed out. How my body could hold an extra 8 and a half litres of fluid I had no idea. It was then I glanced down at my thighs....they looked HUGE. Ah, so that's where the fluid is then.

Introducing old school Kasper to new school Kasper

Today even marked a very special occasion - my first meal post transplant! Ok, so it wasn't much - a cup of Heinz tomato soup and a cheese sandwich - the ultimate comfort food - but it tasted so good. Especially since pre-transplant I wasn't really supposed to eat tomatoes or soup (potassiumy and salty, a big no-no for renal patients) it made it all the better.

Yummy yum yum

Oli's bed space was needed for someone to have emergancy dialysis in the evening so the nurses pushed his bed along side mine which was a bit of a novelty as in the high dependancey ward the beds are really far apart and you would literally have to shout to the person next to you. So we had nice chats in to the evening, until we fell asleep, comparing cannulas and discussing all the things we wanted to do when we 'got out'...

18/10/08 - 1 day post transplant - sponge lollypops and clickable pain relief...yum

I frequently pressed my pain relief button all night and day which caused me to drift in and out of sleep, but this only took the edge off it. I was also experiencing a lot of pain in my left side…bizarrely this was the side that Kasper was plucked from Oli. I have no idea whether this was anything to do with the nerves that Kasper brought with him, but a few days later I even noticed a strange bruise on my side where the kidney would have been in Oli. Crazy the way the body works.

The main transplant Professor visited me who assured me everything was fine and dandy and my creatinine was down to 90. Considering the Wednesday before the operation my pre dialysis creatinine was 806 - this was just incredible. Creatinine is basically a measurement of nasty toxin levels in blood and urine which reflects the glomerular filtration rate (GFR). The GFR is clinically important because it is a measurement of renal function...hence giving me an indication of whether Kasper was behaving or not. Thankfully he was! Oli had trained him well.



Despite the fact that the kidney was doing wonders for my creatinine, I didn’t exactly feel my best. My memories of the day are rather blurred and hazy – probably due to the anesthetic and pain killers. After talking to various people I gradually began to remember more about what actually happened on this day…

Paranoia took over me and I was constantly worrying that any minute Kasper would decide he didn’t like his new home after all, but fortunately a new obsession was born when Dan, my boyfriend, conveniently sat at the bottom of my bed next to the urine collection bag and was amazed by the amount of wee going in there and became oddly obsessed with how quickly it was filling up. Every few minutes I would hear an excitable yelp "another 50mls Hols!" which went someway to reassure me...until he got bored. I then subjected him to my constant barrage of ‘how much have I peed now??’ every thirty seconds. Think he may have started to regret his sudden interest in my wee.

As much as I appreciated having lots of visitors, everyone had a habit of leaning on the bed making it wobble and causing me pain. Unfortunately the ultra sound guy didn’t exactly get this as he not only lent on my bed but decided to sit on it, and sat on my catheter tube at the same time…eeek!

The ultra sound itself was amazing though. I was shown my new kidney working away, and it was incredible to think that less than 24 hours ago this very kidney had been in Oli’s body completely unaware of the big journey it was about to embark on.

The anesthetic had put my tummy to sleep so I wasn't allowed to eat for around 48 hours until I made a ‘bottom noise’ (think the nurse thought I was about five). I still had the IV fluid drip which was keeping Kasper busy but this didn't stop me feeling mega thirsty. Having a dry mouth and lips made it harder to talk which I found really frustrating. All they could offer me was a tiny lolly pop sponge soaked in water to suck on, which literally provided about 3mls of water each time - and seemed to make me want to drink even more. My Mum’s biggest hate in life is sponges - she must have had a bad experience with one in a previous life or something and I could see her wincing with a grimace everytime I asked her to pass one to me. Most amusing.

The IV fluid machine

Looking a little green and ghostly.

Oli was in a fair bit of pain but was happily using his self-administrative morphine drip, which definitely helped. By about lunchtime he was able to sit out of bed and his catheter and some of his IV tubes were removed making him feel a bit more human again.


The Doctors came round again that evening and informed me that they wanted to see me sitting out of bed the next morning. Considering I literally couldn't move at this point, the thought of sitting up actually filled me with dread. I was determined to get better as soon as I could and obviously getting out of bed is vital to the healing process. So I snuggled down as best as I could that night (or should I say early evening, think it was about 6.30pm) and looked forward to the next step in my transplant journey...