the transplant was a success

hello, well i know this is coming as a very late post, but i have been so so sbusy, in a nutshell on the 18th october we recieved a call from our transplant co-ordinator, the transplant was all booked! 5th november! bonfire night we were all a bit nervous but excited, not sure if that is the right word to use, but once the transplant had gone ahead and been successful we could get on with our lives, that was the exciting part. two weeks before the transplant we had an appointment to go and see the surgeon in birmingham and the pshychiatrist(i think, well i know i have spelt that wrong) and the human tissue authority people, we had to prove darren and his dad were related! the appointment with the surgeon it was on a friday, we got there nice and early, we were all a bit nervous again but were happy to be there. the four of us(darren, his mum and dad and me) sat in the room with the surgeon, he started with ron, he examined him and told him which kidney they would take, and the reason that they made the incision at the front and take the kidney out that way is that they have less muscle to cut through, it is the path of least resistance, going in through the front they would have to move bits out of the way to get to the kidney, he explained that ron would have a main cut, big enough for someone to put their hand in and take out the kidney, and 2 small cuts, one for the camera one for the instruments. the only reason ron would need the surgery the old way(which is alot more painful afterwards) is if there was too much blood and they couldnt see what they were doing, so therefore need to do a big cut. he went through all the risks, and how ron may feel if the kidney failed after transplantation, he asked us if we were all prepared for that. we all just nodded! we didnt even want to think about that, we had come this far. then he examined darren, checked out his multitude of scars already! he told him that he could take his pd cathether out at the same time(the tube darren has in his stomach for his old type of dialysis he use to do) which we were pleased about, as it hasnt been used since june but i have had to dress it every other day, and it is an infection risk. hr explained that they would leave the tunnel lines in darrens neck until after the transplant incase he needed dialysis afterwards

but we were all hoping that these nasty lines won't be needed again!






then the surgeon said he had to give us the numbers concerned around death!






that was really scary, and unerved me a bit, rons chances of death from the operation and upto 2 weeks later is 1 in 3000






for darren the cahnces of death from complications within the firsy 12 mths is 1 in 100, that was really scary to hear such a confident surgeon say.


































sunday 4th november























well here are the 2 famous lads themselves, we were waiting in the day room here, for the nurses to get their beds ready,
































on the saturday night darren slept quite well considering(i know we have called him jack through all this but we all know he is darren)


i didnt sleep a wink! i had spent the last couple of days packing cases, sorting tablets, house keys, cats dogs etc, and i couldnt believe it was actually here !


darren went to bed before me on saturday night and i sat up wondering, the house seemed empty, the dogs were in the kennels and his aunties!


i looked around and for a split second i felt a strange overwhelming sense of panic, what if this was darrens last night at home? what if he never saw the dogs again? what if we didnt get to get married? and do all the things we want to do? i was suddenly a bit scared. it soon passed, but the fact it happened was enough, i tossed and turned all night, the morning soon came around, at 8 am i rang the ward to see what time they wanted the boys, we were told to be there by at least 1 as darren was going to have his last dialysis session before the transplant.


so we rang darrens mum and dad and decided we may as well get going, get a parking space, get me and his mum booked in our accomodation(we were staying in the relatives accomodation) so the car was packed up at his mum and dads, his dads brother came to wave us off, and we were away, there was no traffic we got there in plenty of time, got a parking space no problem, and then we took all our stuff to the room we were going to stay in, we called it the hut, it was very basic!








but we were grateful that the hospiatl had them kind of facilities, as i didnt fancy driving up and down the m6 and 5 everyday. it was a small room, 2 single beds, a sink in the corner, there were 50 rooms in total, 2 ladies loo's 2 mens loo's a shower and a bath and a kitchen, so if you was not up early for hot water in the shower you were stuffed!







after we were settled we all made our way over to the ward! east 4b was to be the place darren would be calling home for a while,
they both had ecgs and chest xrays and were both given a sunday lunch, which compared to some hospital meals we have seen in our time actually didnt look too bad!
me and his mum went back to our hut for crackers and laughing cow!
we went over to the ward at visiting time that evening, they put darren and his dad next to eachother for the night, and we all sat chatting, wondering what the following day held in store for us, i knew i wouldnt sleep very well, even though i felt really tired.

today is sunday

well today is sunday, i am feeling alot better than i did, jack is doing really well on hemodialysis, touch wood he hasnt been ill for a while, has sore lines and neck, but that is due to the car crash not any kidney problems. yipee! last week i was really really down, every day i was crying, but telling everyone i was ok, when really i felt sad, but over the weekend i have started to look at things a bit diff, at the end of the day until jack has his transplant we dont really know for definate if his fertility will return, if it does then we can try then, and if not the adoption people said that jacks illness shouldnt stop him from adopting as it isnt anything that can put a child in any danger or that they could catch, so that was good news,dont get me wrong i would rather have our own child but if we cant then at least i am more prepared for it now, i have had a couple of weeks of being upset etc, dont get me wrong seeing people around me having babies is quite upseting, but i will have to deal with that in my own way as it happens,one of my friends is in the same situation, and if she is invited to christenings, babies birthdays etc then she makes an excuse not to go, as it is too hard to bear, i hope i am not like that, but if it is a bit too much then its handy advice, i am on a strict diet now, to be in the best possible health i can be if jack gets his fertility back, lots of fruit and veg, no junk, and plenty of excercise, the dogs are loving all the walks, and i enjoy just wandering through the fields taking in the fresh air clearing my head! hopefully if the transplant is this year then this time next year maybe i could be pregnant myself? who knows, i know we have a big thing to go through with the transplant and it has to be successful before we can even think about babies, but jack is strong he got through it before, and he will again, and i hope i will be too, i need to get myself mentally strong again ready for the transplant, i have never ever felt fragile before, as in my mind, well not as much as i have in the last few weeks, it has just been a big pit of bad luck, i was thinkung about it last night, and in the last 2 and a bit mths, which is what it all stems from alot has happened, it started with jack being rushed into hospital, major high blood pressure and headaches that were so bad he wasnt with it and they thought he had jad a stroke, sorting out the care for him properly, then my grandad died, my cousin told me she had a brain tumour, we found out jack was infertile after trying and getting no where, we found out someone close was having a baby the day after we were told we couldnt, then we had a car crash! i am so unlucky, so when the doctor told me she thought i was a bit depressed i said dont be daft! but looking at the bigger picture i was, still am in some ways, but last week i couldnt see a way out, but over the weekend ive been able to think long and hard and see a way out even if its not completely, i m sure it will be one day. its my birthday this week, but jack is in hospital for my bday till 10pm ish, so i will be home alone, well i will have the pets and my mum and dad might visit me, so i will be ok, anyway thats my update for today, not much to report in, but it is something and i got to vent a bit of depression into my computer!

hello hello, i am so bored, i feel like i am going out of my mind and that i am boring people stupid with the same thing! i can honestly say that i have never ever felt as low as i do at the moment, i have felt sad and a bit depressed before and thought, oh i will be ok, but today and the last few days i feel like i am trapped in a big hole, it seems everyone around me is happy and doing happy exciting stuff, and i am just sat here with life passing me by, i wonder if i am just being ridiculous or if i am justified to feel like this? and i dont know? i keep crying at the most stupid thing! jack just left to go to dialysis, and when he shut the door i cried my eyes out, its another boring lonely night in for me! i use to think i was outgoing, i now feel as if i am about 60! if not older, nothing i ever do ever goes right, ever! and i am wondering how much more i can take. i feel like just walking and walking and walking when i was out with the dogs just, dont know where too, i feel really alone, and its horrible, i know i have darren, but he is going through enough himself, i dont want to bother his mum and dad, they have had a life of worry thinking about darren since he was a baby, my mum and dad have there own problems and live about 80 minutes away, my 2 closest friends have their own lives and get fed up of hearing about my troubles, they are young they want fun, not misery bags here! i had a really good best friend and she died when i was 21, she knew all my secrets i knew hers, and after she died there wasnt anyone else that knew all that, we had been frinds for along time, my mum and her mum are best friends still and heve been since they were 4! so the 4 of us use to do loads together, but we dont now, cause she isnt here, i miss her and wish i could tell her all this and have a laugh instead of feeling so sad. i am rambling now, but i needed someone to tell all this to, there isnt anyone else so a computer will have to do! and i will ahve to snap out of this bloody mood and downward spiral i am in, its my bday 2 weeks today and i will spend it on my own as jack is on dialysis on a friday night! i feel like i have nothing at all to look forward to anymore, just stress and worry and sadness, and i think alot about aunty maureen and aunty chris and stuff, oh well, time to go. x x x take care everyone x x x

it doesnt rain it pours

well it doesnt rain it our house, in fact it doesnt pour, we have bloody hurricanes! no really we do! well as you may see from yesterdays post we feel a bit sad at the mo, in fact i would say at the moment, with advise from my doctor that i am suffering from deppression! i feel a bit like i am useless, i am the one suppose to be strong, the transplant co ordinator was getting dates from birmingham this week and was due to ring us, she hadn't so i just rang her, but she is off sick and they dont know how long for, so i'm not sure who is doing her job at the moment, so that is another set back, we were hoping to have an update this week! well yesterday i went to see my doctor, i was in a right state, worrying about work, panicing, and basically just crying and feeling bad about everything going on in our lives at the mo, i feel like i am in a black hole i cant climb out of at the moment, when i see people i just smile and be my usual chirpy self, then come home and just be myself again, depressed. i am finding information from the nhs hard to get, we asked about how dialysis affects fertility, we were told, "urm not a great chance of getting pregnant on dialysis, we dont really know" so i sat up all night looking into it, there is no evidence anywhere of a man fathering a child that is on dialysis as on dialysis they are infertile! should this not be made aware to all renal staff, cause believe me it came as a mega shock to us, we had no idea! and then to be told that the fertility mey never come back due to dialysis is heartbreaking, so not only have they now had us waiting 18 mths for a transplant where we have the donor already, they are also taking away our chance of having a family by keeping jack on dialysis! i am just so fed up of it all! i sit and think what is the point in my life? why am i here, i dont serve a purpose, i may never be a mum, so am i just going to live like this forver, stressing and worrying, making myself ill, being depressed and having the doc putting me on prozac!, i dont want to live a life like that, and sometimes its easy to understand why my mums 2 sisters both committed suicide, life can seem so unfair and cruel sometimes. you try to d your best by every one, be a good person but things just get worse, and you wonder what you did that was so wrong. so anyway yesterday my doc said i was stressed and depressed! (i'm 28 its my bday soon, should i not be happy) we just need this transplant so we can at least be trying to get our lives back on track! so i have to try and de stress a bit! try!! try !! try!! so then i went to work, took my note in, an on the way home whilst sat in traffic some idiot who claims he couldnt use his pedals properly because he is a wheelchair user crashed into the back of us at over 30 miles an hour, so as if we dont have enough time at the hospital we then spent the rest of the day there getting checked out, well i was ok, my wrist is a bit sore and my back, but i'm ok, darren was a tad diff as his seatbelt runs across his lines so it dislodged them and bruised all the area around them, so he had to have them flushed and today they will check they still work on the machine if not its another gruelling time having a central line put in! he also has a sore neck and shoulders, soft tissue damage the doc called it. so whilst trying not to stress!!!! i was ringing insurance, ringing rac, car hire place etc! wgat a bloody nightmare, finally last night at 7pm we got another car and ours was taken for repair, its only 6mths old, poor car! so i was totally stressed the day got to me again! and i ended up in tears again! we sat and had a heart to heart and both cried and i was given the option to walk away fro it all, jack told me to leave him and find a man that i could have a baby with and that wasnt ill and didnt cause stress, he was vrying his eyes out, i was too, it was awful, but i told him i'm going no where, i love him for what he is, not what he can or can't give me, i saw my brothers ex girlfriend leave him due to something familiar it destroyed him, but that isnt the reason i am staying put, i am doing it out of love, and hopefully,my tears should stop and i can smile all the time, rather than just infront of people to put on a front! thanks for all the support from friends and family.x x x x

today i am sad

today i am feeling sad and really happy all at the same time, which is a very strange feeling, a close friend of ours has tonight rang us to say they are expecting, we are over the moon for them we really are, and we wish them lots of love and luck. however we did wnat our own baby and have been trying, only to be told that jack is virtually sterile on dialysis, so we were trying for nothing really, we had mixed messages from the hospital, but after looking into it and asking to see a specilaist about it, it seems that is the case, sometimes fertility can increase after a transplant, it depends how long someone has been on dialysis and tablets!(ANITHER REASON THE NHS SHOULD PULL ITS BLOODY FINGER OUT!) there have been cases of men having children after a transplant, but usually if it was a quick sudden renal failure follwed by transplant and getting well again, not from long term kidney problems, oh well at least i haver my health, so i should shut up moaning!

update

well i haven't done an update for so long, sorry, but it has been a bit busy, jack was poorly in hospital, then i was ill with insect bites cause i am allergic, then the dog very nearly died and my grandad died on saturday, i tell you, it doesnt rain it our house! we have storms!

well we still have no date for the translant, we were told in march it would be june, in june it would be july august, in august we were told september, but the transplant co ordinator said she doesnt yet have any dates! and we just have to keep waiting, it is so frustrating.

some people have asked or commented on the fact that they didnt realise how invasive dialysis is, so i thought i may have a go at trying to explain, a little, in normal language, after all i am no doctor, so i will apologise now if i spell anything wrong

well there are 3 types of dialysis, hemodialysis, which is done at hospiatl or at home and uses a very complex machine that cleans the blood, this is generally done at the hospiatl everyother day, the dialysis unit give people time slots and they arrivem get attatched to the machine finish and go home, they are weighed before they get on the machine, as the patients all have a "dry weight" which is their weight when they first started dialysis, and by weighing everyday the nurses can tell if somebody has fluid weight on them, as this isnt good, the patients can drink between 600ml to 1000ml(1 litre a day) as they dont wee very much, so any fluid they drink stays in their body and every other day on dialysis they have it "pulled off", if they drink too much(2 kilos is normal to be pulling off, a kilo equals a litre) and need more than 4 kilpos then it can make them quite ill on the machine, feeling sick, dizzy, headaches and tunnel vision, and it makes the heart work harder to drag the fluid off, so its best to stick to the restriction, and fluid includes not just drinks but yoghurt, ice cream/lollys, custard, gravy, curry and alot more, so patients like to have ice cubes to put in their mouths as its a small amount of fluid that lasts a while.hemo can suit some people and not others, as with all types of dialysis, it depends how you attatch to the machine, which can either be by a tempary line in the neck or groin that is put in under local or general anesthtic, that line is the attatched to tubes n the machine and can last for 2 weeks before it needs changing, or you can have a tunnel line, which is permanent and will go into the side of your neck down into your chest to the main arterey, and then this is attatched to the machine, both of these have the added risk of the lines getting infected or clots forming, so they are flushed each session to try and prevent it, and re dressed as it is like an open wound all the time.

then there is capd dialysis,you have a pd cathether operation a few weeks before where they insert a tube into the abdomen that comes out on the outside that you attatch to, inside it is attatched to the peritonium, and that is where the fluid sits and dwells, the exit site of the tube has to be dressed and cleaned every other day to prevent infection, but the dialysis which is done by having a heating machine at home and lots of deliveries of fluid like in the pic above, which can be a pain at times, but its not too bad i suppose, so you put the bags of fluid in the machine and it warms them through the day, then 5 times from when you wake until bed time you go to the room you do dialysis and sterilise a work surface and attach yourself to a bag of fluid, which also has an empty bag attatched to it, so firstly you would drain the fluid from your abdomen from your last session, into the empty bag, then hang the new warm fluid up a drip stand and allow it to drain into the abdomen, the bags of fluid are 2 litres each, it stays inside until next session taking the toxins away, so the fluid goes in clear and comes out like a wee colour, when you attatch to the fluid bags there is alot of alcohol hand rubbing after each thing you touch to prevent infection, after each session you take the bags to the bathroom take off the clamps, tip the fluid down the loo or bath and then put all of the equipment(bags, sheilds, caps etc) into a yellow bag and they are collected by the clinical waste department once a week, it is a gentler way of dialysis, but the food restrictions are alot more as it doesnt take pottasium or phosphate out like hemo does so it can make you ill in other ways.

then there is apd, which is a machine that you use at home at night for 9 hours, it is quite big, you have pd cathether in the abdomen again for this type and the deliveries of fluid and equipment the same, you leave the machine on all day with 10 litres of fluid warming on it, then at night when you go to bed you go through the sterilising process and attatch yourself to the machine(it takes 15 mins approx to set up the machine putting in new "casettes" that the fluid travels through etc, then when you are asleep the machine will first drain the fluid it left in on its last cycle when you came off the machine in the morning, then it will pump fluid into you, and it will dwell for approx 1 and half hours, then the machine will pump it out of you and refil you again it will do that for 9 hours and in the morning you attempt to carry 10 litres of fluid to the bathroom! that can be fun! the only thing is that the machine can be noisy with the sound of the pump so can disturb your sleep sometimes, and if it needs to alarm in the night! wow it is loud, but it has to be to wake you up! plus if anything goes wrog in the night and believe me we had lots of problems, then there is no one to speak to, so you have to guess and hope you are doing it right, as the ward that looked after us was only open mon-fri 9-5 so at night when we sometimes needed someone we were left to it, plus the most important thing with the machine is that it is programmed to the patient, now on this and capd the patient does have more "urine output" so they may have lost half the fluid in the day, but te pump will keep pumping to take a litre off each night or more sometimes, and that caused alot of oain and referred pain and we ended up with paramedics in the bedroom on many accasion treating him for a heart attack! due to the referred pain, that was very scary!

so there are the 3 type, in my language, hope that helps x x x

i'm soooo tired

today i am sooo tired, the weekend went better than expected, they waited to see how his body would react on certain medication, the visual disturbances stopped, but on monday he didnt feel very well and sickly, and he couldnt get warm, but compared to how he is sometimes this is easy to cope with. i suppose i have to put faith in the new doctor and see what she can do, on tuesday he was allowed home again, his blood pressure in getting a tiny bit lower again, which is good, so now darren is out of hospital, hopefully not just on ward release, (he gets really stressed out in hospital and it is better for him to be at home they say) i think personally they just want the bed sometimes. last night was on ok night, he was awake alot, tossing and turning so i was too, yesterday we also recieved a letter for his regular transplant clinic appointment, for mid oct? so we are thinking that the transplant won't be before then, i wish they would keep us updated. i feel really tired but i cant sleep, which sounds stupid but thats how it is, i feel on edge all the time and always getting headaches, but hey this isnt about me i should be thankful i'm not going through the same i am off to work today, the government in there power have finally said that we do deserve some kind of care allowence! they kept on saying no, because i didnt have to dress jack everyday! which seems ridiculous, i'm sure loads of people getting help dont have someone get them dressed everyday! but i appealed twice, (like we havent got enough to do) and i was told to write down what i would have to do if jack was having a bad day, so i did, so in a nutshell when his hemoglobin is really low and he can barely walk then i have to take him to the toilet, he hates that but it has to be done, when his toxins are running high and he is having a sick day he can be in bed and be sick all of a sudden, so i have to get him in the bath to sort him out, change the bed, clean up any sick etc(which seems small to some people but try doing this regurlary or upto 3 times in one night) he also has an open wound that will stay open until he has his transplant that i have to dress to make sure he doesnt get peritonitis, he also can't do much around the house, he isnt allowed to use a hoover, (due to pulling it, and pushing it putting strain on his peritonium) somedays he gets up, goes to the toilet has a wash then he is asleep for the rest of the day he is so exhausted, and sometimes i sit there and feel like i am on my own, this isnt jacks fault, he cant help that, i think sometimes people dont fully understand, mates come and go, cause they dont hang around when you have to let them down cause jack has been rushed into hospital, so we daren't plan anything, we live each day as it is, we have some very good friends who always ring up to see how things are or pop round, but no one likes to pop round in case jack isnt well etc, so we live in our own little bubble, which is ashame sometimes, but its life i suppose, and then you get fed up of telling people the stories of what is going on at the moment, do they want to know, really? or do they ask out of politeness and really i am just boring the heads of them? cause i dont mind telling them but you see some people just shut off when you start talking to them about it, this has been the most stressful time in my life, and at times i feel so depressed, but the thing that keeps me going is that oneday soon the transplant will come and we know there are risks of rejection and failure and complications, but i am trying so hard not to think of that, else i will go round the bend! the thought of dialysis forever makes me sad, for jack, not me, but whatever this world is throwing at me i keep taking it all in, a nice intensive care kidney transplant nurse has given us lots of advice on what to do after the transplant to give it the best shot and we will do this and thank her for the advice, she got in touch with us in her own time and isnt from our local hospital see the nhs does has some good parts, i think ( I HOPE)