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)

its monday, lets have an update!

well hello again, today is monday the 23rd july, and as usual things havent gone swimmingly, jack finally got actual time slots on the hemodialysis ward, mon, wed, fri til 9.30pm, not the best shifts in the world, but at least he has them, since the last update i did jacks blood pressure has been getting higher and higher, and the ward have said it is because he must be retaining fluid, as his weight is higher than it was in november when he started dialysis, but in november he was skin and bone so in my eyes(and i'm no doctor) i would say jack has out real weight on, not fluid, it has been 8 mths after all, but no they dont listen to our opinion, and reduced his dry weight on the dialysis machine, this made jack ill, really light headed, tunnel vision, sickness, we both told them, but the next time he went they did the same! it felt like talking to a brick wall, so rather than trying to find out why his blood pressure wasnt going down even though they were taking extra fluid off, they just kept on pulling off more fluid, it came to a point where jack got really upset and stressed out as he knew each time he went on the machine he would end up ill, so he didnt want to go on, he had a banging headache that was continuous, painkillers wouldnt get rid of it, due to it being down to pressure. then last wednesday things came to a head, jack went for his dialysis, i got in from work and hadnt noticed the time and the phone rang, it was jacks dad, asking if he was back and ok? no he wasnt, but he should have been home in the next 10#15 mins and if not i would ring and see where he was. a few mins later the phone rang again "is that jacks partner?" by the voice of the woman and the tone of her voice i knew it was the hospital and jack wasnt well, she told me that the doctor wasnt happy with his blood pressure and wanted to admit him as it was dangerously high, it was 10pm, so i rang jacks dad and we went upto the hospital, he was in a bed and looked terrible, his blood pressure was so high they were worried about him having a stroke and the affect it was having on his heart due to the strain of the extra pumping, and guess what! he was severly dehydrated too! which i had been sying all along, now as i said before i am not a doctor, but when you live with someone 24/7 you tend to know when they are ill, and as jack has been hospital with dehydration before i knew the signs, i knew they were taking too much fluid off on the machine and his blood pressure being high must be down to something else. so we sat with him till 11.30pm the doctors had him on a drip and on a syringe driver for some medication to help reduce blood pressure, it was a matter of waiting. i didnt sleep that night, i tossed and turned, i went back in the morning with a few bits for him, granted it wasnt visiting time, and boy did the nurse let me know that! i was only dropping off his tablets, as they didnt have any! no consideration to the fact that he was brought in late the night before and we were worried about him, so i left the tablets and went, i went to work, i felt like crying i just remember the doctor saying they were worried about him having a stroke, i was dreading the phone ringing with horrible news, i finished work an hour early to go and see him, i'm not sure how i got through work that thursday really. he was still ill, and he got upset cause he was worried, his potassium was also low, a few weeks ago it was too high, so someone did a good job of monitoring that! (yet again) he didnt have a good night his head was getting worse he could barely open his eyes, i didnt sleep at home and was shattered, i got to work at 9am to see my boss on the friday, my boss asked how things were and i burst into tears explained about the stroke thing etc, and i was told to go and be with darren, i went to see him and take him some drinks, better than warm water in a jug! his b p was still the same, 188 over 117, i went back that evening and sat with him none of us knowing what they could do, or what they would do or what would happen next. i went home really tired, again i didnt sleep, my parents decided to come down to see mt the next day and come and visit jack with me. we were getting ready to leave and the phone rang, it was jack himself! he could come home until monday! wow. so i shot upto the hospital, his head was loads better, the reason it got worse was because the syringe driver he was on for blood pressure caused headaches and should not be used for more than 24 hours, he was on it for nearly 60 hours! oh it makes me so mad, the renal speciallist was horrified that he had been on it for more than 24 hours and said she want surprised his head hurt so much! so she took him off it, his head eased instantly, and they started him on diff bp tablets, he was on 4 already and said i could monitor him at home, if his bp went over 190 over 120 to bring him back in, so we did just that, in fact he has just done his bp now, 182 over 112, but we are due to go back in today and see the doctor have his dialysis and see what happens and she will decide if she will need to admit him again or let him home, i'd rather he was home, but if he is poorly then hospital is the best place for him, i think, i really dont know anymore, so much has gone wrong that shouldnt, that i am starting to loose my faith! i will update you all later to see how it goes.

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can it get any worse!

well on minday we sat in the hospital for nearly 6 hours it was so boring, jack had a headache when he got there we explained to them about how unwell he is afterwards, so today they are going to try something to do with the sodium used in the machine, his blood pressure is 174/105, so its high! before he gets on the machine he has to weigh himself, now the first time he went on dialysis(hemo) 2 weeks ago he was weighed and that is what they call his dry weight, so eachday when he gets there he is weighed and any weight that is over the dry weight is taken away on the machine as they draw the fluid from his blood on the machine, so that when he comes off he should be at his dry weight again, which is all well and good, but the first day they put him on the machine he had been briught into hospital unwell,for nearly 6 days he had hardly eaten and he had been being sick alot each day, so we tried to tell them that we thought it may not be a true dry weight, but NOBODY LISTENED! so when he was weighed at 74.2 and they are saying his dry weight is 71 kg then there is an awful lot of fluid to be taken away, so each time they now think they may have actually got the dry weight wrong! and dehydrated him eachtime! THATS WHAT WE SAID! so today they said they will try something different, on monday night he was so ill, being sick, sat with his head in his hands as his head was that bad, he sat in the dark, we tried putting cold clothes on his head, and guess what the hospital gave him paracetamol! i told the nurse that these didnt touch his headaches that he had had for the past 2 weeks being on heml dialysis, so now he couldnt have any other painkillers yet as she had given them to him, he had a bad head all yesterday too, his blood pressure did come down a litttle, but he is that stressed out about going on the machine that it does him no good, he is dreading it, so we will have to see yet again today, i am going today to sit with him as last time the bed he is on has no buzzer! so they asked me to be the human buzzer again, well i wouldnt like him to be sat on his own and there be a problem! they told us that if the machine did a quiet beep with a message on to let them know and they would do what was needed, but if someone isnt sat with him how do they ant him to do that, scream his loudest to the nurses bay! as he has 2 lines hooked upto him so he cant just jump out of bed, and the other patients in the bay with him are all very old and barely awake, if a nurse tells us again "oh what ashame for a young couple to be going through this" oh thanks we already know we dont need reminding i am ditting with him when they do it today again, its such ashame seeing him hooked up to all the machines his blood pumping round and around, especially when it isnt making him any better, this week i have felt like we have got nowhere, ok so the machine is taking out the toxins to stop him being septic, but apart from that he is just ill from it all! him and his dads tests have all come back ok, why dont the just do the transplant! ahhhhh it does my head in! i am that stressed out at the minute, i spoke to my boss last night, he was fine, but i'm not i worry about work, about darren, and dont seem to have minute to worry about me, my hands flared up again, and i have them covered in dressings, i swear its the stress that does it all, i just wish it would all be sorted out so jack can enjoy life again, which in turn as a couple will mean we both can, i think we deserve a good few years, some good holidays etc, is that too much too ask?

its monday

well today is monday, all in all the weekend has been ok, jack spent alot of yesterday sleeping, he was worn out, as he went the rally on saturday to see his dad, was a good day, he enjoyed the fresh air, plus when he did get tired he just sat on the bus and relaxed, the rain wasnt to bad a couple of heavy showers in the afternoon, but yesterday afternoon was horrible and it has rained all night, and it still is now, he is due to go for dialysis about 12 ish, and i am going to see the parking attendant! i have written them a letter already! fair enough if were taking the mic, but we have to go to that ward as the hospital doesnt have slots on the ward he should go to, that does have patient parking! cheek! well i will go get myself ready and see how jack is, he was really thirsty yesterday but didnt want to drink too much due to the fluid restriction, plus if he has put fluid weight on since friday they will only want to pull off on the machine today and make him bad. so we will see what happens. my mum and dad went to scotland on sat, hope the weather is better there than here!

parking tickets at the hospital!

we got to the hospital, now at the moment we are having to go to the normal renal ward as a day patient as there are no slots available on the hemodialysis ward, where there is lots of parking for us, so we are having to park by the ward,as after dialsis jack can be unsteady on his feet, the tax disc says we are registered as disabled, due to jacks mobility when he poorly, so i parked in a disabled spot, we are waiting for our badge to come through, we got out and thre is a bloody ticket and a £40 fine! well if the hospital got us slots on the ward we should be on, where we could park then we wouldnt need to park elsewhere and if the attendant had read the ticket he could see we were registered disabled as it states this on the tax disc, i was literally 10 mins picking jack up! it makes me so bloody angry! like it isnt sressful enough as it is! and we are parking there as we have nowhere else to park! IDIOTS! anyway jacks blood pressure was high today again and he still has a really bad headache so he has been prescribed a third blood pressure tablet, but if it sorts out the headaches then thats ok, cause painkillers don't touch it, he was a bit tired when we got home but after a sleep and something to eat he was ok, once his body gets use to this type of dialysis it should be alot better, we dont have to do any dialysis all weekend! so jack is really chuffed with that.the weather today has been awful,raining really heavy! and its the rally this weekend where his dad takes his bus, i hope it doesnt get stuck in the mud!

hello its friday!

well yesterday was a good day on all accounts, jack still has a banging headache and is worried about drinking too much as he is on a fluid restriction, one nurse told him 600mls a day, thats not even 2 cans of pop! one told him 1500 mls! so he is unsure so is being very careful but then ends up with a bad head cause ha hasnt had enough, so today we are going to find out properly what he can have, its a long 4 hour stint on the machine today, they say 4 hours, but as there are no time slots on the proper dialysis ward we are having to go to the renal ward so we can be sat for an hour before the get him hooked uo to the machine, quite rightly so though, they have to look after their patients first, and that is how it should be, we just have to be patient. so taday he should have his dialysis, if it takes its usual pattern then he will be shattered for the rest of the day then he should be ok for the weekend, then its back to it on monday, and i am at work then so its just seeing what his time slots are for taking him and picking him up, hopefully soon he can drive himself home, but for now he feels dizzy and sick and washed out afterwards so its not safe to drive home, but they have said that should get better as his body gets use to it. so we hope it does to, for his sake. so i will go and get ready for the hospital now, he has no buzzer on his bad,so i am his buzzer when he is on the machine if he feels unwell, lets hope i dont fall asleep hey!

hello its friday!

today

well jack had his hemodialysis today, another 4 hour session, he ended up with a banging headache again, they think that is because of the fluid it takes off him, so not sure what can be done about that? i was allowed to bring him home about 3.30 today, so even though they say it is a 4 hour sessin, we were there at 9am so it does take up alot of your day, when he came home he had a really bad headache and said he didnt feel right, so he had a sleep, then he woke up, was hungry, and fancied a piece of fish from the chippy for tea, so i got him that, he was hungry and ate the lot! not like him, amd now he has gone to bed again, he is so tired, the days he has dialysis you may as well write him off he feels so rough afterwards, then the day after he is good then its time for some more, we are hoping that as his body gets use to this he will feel better, with time, cause at the min it is awful a good ish day,then a bad one, the weekends we are free from it though which is good, this weekend will be the first one on this type of dialysis properly, his body didnt have to deal with all his blood being taken out of him and cleaned before so this type does wash them out more, but hopefully in august or september he will get done and all will be well, everyone keep their fingers crossed for us.and once again thank you for reading this, hope you enjoy it, if that is the right word, if you are new to being a renal patient then pls dont be afraid if you read this, cause this is worse case scenario, everything that can go wrong has, and all this doesnt happen to every renal patient! right now i am listening to rose by the feeling, it is fab, reminds me of our recent holiday! oh its making me cry now, i must be getting all emotional at the moment the transplant is getting closer, and if i am honest i am really quite scared! but its not to bad, when jack is poorly in hospital or up in bed i get to have my cries and worries so i can smile and be positive whwn we are together, no dialysis tomorrow! oh no, another fave song has come on! your lovely to me, by lucky jim, its fab! its off the pedigree advert with the dogs, its lovely, makes me cry too! our oldset dog is upstairs with his dad, i think he knows he is poorly, when he was on capd dialysis and had to do it 4 times a day he would go upstairs with himand sit patiently wagging his tail in the corner making sure he was ok, ahhhhh i am going now i can hardly see the keyboard! good night everyone x x x

today

today it is time for another stint on the hemodialysis machine, lets hope its better than the last go, jack was so ill, being sick, feeling dizzy and faint, it wasn't very good, we hoped it would make him feel better, it seems the day he had the dialysis it makes him feel bad, then he will sleep if he can, the following day he is ok, then the following day he has more, so we are having a word with someone today, cause he doesnt want to be feeling so ill every other day, surely that isnr how he should feel? he is more open about it all now, and last night was chatting to our neighbour, he lifted his top up and shown him all his lines and pipes etc, i was surprised, cause he hates them, but i think now he is just learnng to deal with them, which is good. we went to see his brother and girlfriend last night, and saw their cat, she was in an accident on sunday, but thankfully she is on the mand, poor little thing, i hate it when anything happens to pets! and they have to dogs, jack said" you couldnt have 2 more different looking dogs" , one is a choc lab, she is lovely, and the other is a tiny little thing(i will find out the breed) its a little one that fits in your hand and its fully grown, he is sooooooooooo cute. it was pouring down last night when we left his brothers, and half way home the rain stopped and the road was dry, it was bizzare, cause the rain was really heavy, in fact it is on the news now how the midlands was hit with flash floods last night, so i think we were lucky. anyway i must dash, time to go and get myself ready, i will update later as to how things go, fingers crossed

the holiday

so we went on hoilday the next day, it had put out a poor show of weather for the week, but we didnt care we needed the break, it was great, then on the tuesday it all went wrong, jack had another leak! oh no, we rang the hospital and they told him not to do any dialysis until that night, to rest it in the day, it was ok that night, but then it leaked again on the wednesday, so we called them back, dont do any dialysis at all and come and see us when you are home to get your bloods done, so on the fri we were up at the hospital, they did his bloods, urgent again, again they werent ready before the ward staff went home so the other ward had to deal with it, jack took ill over the weekend, was in real need of dialysis, i should have gone back to work that day, no such luck darren was so poorly, his results had rocketed, it was aroasting hot day, the docs said he neeeded an urgent line putting in his neck to do dialysis straight away, so they went to arrange it, he was lay on a bed in the day ward, he was near on delerious i would say, he was writhing around, he kept being sick, there were too many toxins in his bady, the nurse came back, sorry there is no bed, you will have to go home there may be a bed available after 9pm tonight! i was so angry, i asked if they expected me to take him home like this, they said yes, there was nothing else they could do, i explained how worried i was and that last time we had to do this we had to call an ambulance when we got home, and her words were, well if you need to do that then ring for one, my head was pounding, and i was so upset now, im had tears in my eyes and not a single person cared, so she said we could stay there till 5 with them then go home or go now, she said we could make our decision and she would pop back, we decided to go, if we left at 5pm the traffic would be terrible, at least at 2.30 it wasnt so bad, we looked for the nurse who was dealing with us, but she wasnt around so we let the lady know at reception and went we were both crying, i was disgisted that the ward that were suppose to be taking care of us were allowing us to both walk out of there crying! i was so angry. halfway home my phone rang, i pulled over, it was the nurse, where are you, i told you to see me before you went, i need to do some urgent blood tests and give jack some cream!, well why didnt she say so before? we looked for her and she wasnt there, jack felt like awful he didnt want to sit hanging around he either wanted to be admitted, if he couldnt then he wanted the confort of his own bed. but anyway i turned around and when we got there his nurse said to me, "anyway i would advise you stay here with us until 5 just in case" in case of what, and if that was the case why didnt she tell us that before? if that was her professional opinion then tell us, or had someone in the maentime told her it was best we stayed there! i do wonder, so we stayed till 5pm and then was told to go home and call at 8.30 to check the bed was ready, i got him home his parents dashed round, he was on the sofa now, he was crying he said he felt like he was dying, i'd had enough so i aclled the ward he was due to go on, nothing they could do the bed wasnt free yet, i told them how bad he was, and the woman i spoke to said if he was that bad then call an ambulance and he would go to a&e, and it was a 5hour wait to be seen by a doctor! it was 7pm, so did we wait until 9pm for the bed or take him now to a&e and wait until midnight for a doctor, that would then say he needed a renal dotor to see him! so his dad took him upstairs and tried to settle him in bed for an hour, i rang again at 8pm, the bed was his, it would be ready at 9.15, so we got there at 9pm, just in case someone else was there to pip us to the post, me and his dad stayed with him until about 11.30, then we had to leave people were trying to sleep, plus they said they may not do anything with him tonight, they did lots of tests to decide if they needed to get the registrar to come and put an urgent line in, so we went home, i didnt sleep a wink, there was no one to put a line in that night, so they got a doctor to come and do it on the tuesday, he was in agony cause they didnt put him to sleep! his neck was all swollen and he was still feeling really ill cause he was yet to have any kind of dialysis. that night they decided they couldnt wait for the lines to bed in, they needed to give him dialysis, so they did just that, only a 2 hour session, rather than the full 4, he was so ill he lay on the bed looking like death warmed up, i felt so helpless, there was nothing i could do. although i did feel useful getting some letters and id together for them both(himand his dad) the tissue authority have to have proof that people are related when giving a living donor, just in case it is someone paying someone for a kidney, which i can understand if someone is doing it for a friend,,but all the blood tests and tissue matches they had had you would think they could work it out that they were related, we had to get letters off family and friends of them stating they were father and son, red tape i suppose, and a big waste of nhs resources, having them all photocopied at the hospital, then having an appointment where you take the proofs just to prove they are father and son! so anyway jack is now on hemodialysis, he has only had 2 full sessions and hes been ill after each one, so we have yet to see what happens, yesterday he was being sick afterwards and was really ill, here is hoping next time is better, and hey we are upto date just about, so i can update this each day if i get the chance. i do this in the night when i cant sleep and my head is buzzing around, which is most of the time.

who is monitoring who

we went back for another blood test hemoglobim is on its way back up, the potassium is still going up, neds to be sorted out cause apparently(the doc told us) when someone is under anesthetic the potassium levels rise in the blood anyway and if they are already high it can cause the heart to stop, oh the news just gets better, so the send us away with another leaflet to read as to what he can and cant have! we are so excited cause we are going on holiday the following week, no one rings us from the hospital, they mustnt have been that concerned with the last blood tests then, scaring us like that! the day we are due to go wawy i go to work and jack decides he will pop up to the hospital have his bloods done, he wants to check he is ok before we go away. you just know it isnt going to be good, we get no good luck at all! i do something stupid and look upto the sky, you know like people do as if they are talking to someone up there! And i ask my grandma and best mate jess to send us some good luck, they must have given it away that day! cause we didnt get any, i think they are saving it for the transplant, so i wont complain. i get a call at work, jacks potassium is very high, high enough to now cause a heart murmur and palpitations! oh charming, so lets get this right, if jack hadnt gone in himself and requested a blood test this would have just got worse, so when would someone have contacted us to ask him to go for a blood test after all he was being monitored wasnt he? or was that forgot about? hmmm! my boss kindly drives me to the hospital, he is sat there looking exhausted, they are waiting for his urgent blood results to come back, he had them done at 2, thsi ward closes at 5 remember, until monday, somehow i think they wont get the results before 5! and it will be passed to the renal ward who will have to dwal with it, if it comes back high its time to go in for a drip tonight as there is something they can give him to bring it down, oh great has nobody thought of giving him this before! last time we were going on holiday, it was only a weekend, my mum and dad were taking us to whitby for a weekend in a hotel to chill, but guess what his bloods that day said his calcium was dangerously high( the weeks before it had been dangerously low!, monitoring is superb as you can tell) so we were told we couldnt go and to stay close by, so we did and he eneded up rushing to hopital in the night with jack being out on a drip etc. so i wasnt going to be impressed if it happened again, they told us to go home and they would ring before they finished to see what would happen when his blood results came through, thet rang just after 5, not ready could we call the other ward at 6.30pm, so we did that, still not ready, could we call in an hour so we tried for an hour but the phone was engaged for nearly an hour, so at 9pm i rang, still not there call at 10, jack was knackered no so he went to bed, i rang at 9.45 and spoke to a nurse they were back( i think i will check with guiness book of records cause they are the fastest urgent blood tests i've ever known, i have to laugh else i will cry!) the nurse was relaying everything i was saying to the doctor and vice versa, so they obvioulsly hadnt been told what the problem was, we were told that they would know all about it and have aplan of action, well maybe on another day but not today! so i asked if i could speak to the doctor as we were due to go away the following day, they wanted us to come homeon the wednesday for a blood test,(so lets get this right when he is at home 25 mins from the hospital they cant remember to monitor him, but now he will be 4 hours away they want him to come back for a blood test? hmmmmm, my mum works at a doctors and said why didnt they just arrange for him to have his bloods done local to where we were? too much hassle don't forget, this was all being arranged on friday at 4pm they finish at 5pm, not enough time to organise) anyway i spoke to the renal doctor a very nice lady she was, jacks potassium was now fine!!!!!!! all the stress of today to tell us that? we could go away the next day as planned, no problems and we didnt need to come back on the wednesday for a blood test, we could do it on the friday or saturday the following week when we came home, i was so glad i spoke to that doctor, she was very nice actually. so we went on holiday couldnt wait for a break for a week, ready for the transplant when we got back!

april/may

that was in march and things were going quite well, then there was a blip in april, blood tests showed that jacks hemoglobin was going down, last time that happened he was really ill, so we didnt want that to happen again, and his potassium was high, not unsafe at the moment we were told, but it was getting that way, so we have to monitor potassium intake and are told all about that, jack has more bloods done and we are called in, we are asked what we have been doing! we are sat there like 2 naughty school kids! his potassium was getting higher, protien was too low, cholestrol was high, and phoshate was high! and hemoglobin even lower, well we dont know what we have done, how about somebody tells us? cause we arent the doctors after all. so its a change of diet and close monitoring, and he is bck to doing his injections once a week rather than fornightly to help the hemoglobin. its a bit of a nightmare to get your head around what he can and cant have, but we muddle through, we went to tesco and did a special shop, and he has a shelf in the fridge so we dont get confused! so lets see what happens when he gets monitored!

trip to birmingham

we went to see the surgeon today, he was really nice, we went in he shook our hands( how then big hands do such a delicate operation i will never know!) he put our minds at rest loads, his words were "OH I LIKE THIS KIND, NICE AND SIMPLE" i'm glad he thinkd so, but cause jack has had a transplant before, he already has the plumbing(!!!!!) for the next one. we just want a date now, we were hoping for june he said(but as you can see we are in june now and we are still waiting) it was good to see where it will all go ahead, me and jacks mum will be staying in hospital accomodation when the transplant goes ahead we have been told its not to bad and reasonably priced! so we will see, it was a doctor that said the price is reasonable, but hey he is probably on alot more money that me so his reasonable might be my expensive! so we will have to wait and see. we also saw jacks transplant co ordinator, as he is on the transplant list so if one comes available before his date for his dads then he will have that one, very unlikely some people wait years although last time he only waited 3 mths. we had to give loads of phone numbers for ll ways and means of getting intouch with us if they need to, down to my bosses number at work and the local police station and reg of the car, if they cant get in touch the police will find us and if it is in the night and we dont hear the phone they will get the local police to come and wake us up! i dont fancy that much! but everything is getting organised i feel a bit of relief seeing the surgeon, he put us at ease for something that will be very major.

the leak

ok, so we thought capd was good, then one night jack woke up, his manly bits or one of them was really swollen, panic set in, we went to see his nurse, its a leak in his pertitonium! great, what next. he may need to come of capd and go on hemodialysis! which would mena another line in his neck, we dont want this, but its out of our hands. thay tell him to rest it for a couple of days, no dialysis, and see if it heals itself, someone somewhere must be actually looking after us! its healed and it was ok! so we can carry on with capd

moving onto capd

so we had training for capd, it is much gentler and means that the fluid is drained in and out naturally, rather than with a pump, so once your body has given out enough it will stop, no pump pumping for more! yipeee! we still have big deliveries from baxter every month for loads of boxes of fluid etc, which we keep in one of the spare bedrooms, there is loads of it, and jack sometimes gets fed up of seeing it all, but like i say to him, it is keeping him well, remember before christmas when you couldnt even get to the bathroom on your own. sometimes jack gets very down and i try my best to keep him upbeat but sometimes its so hard, cause i amtrying to keep myself upbeat too, ahh well never mind me, im not the one that is poorly, i should just be thankful for that i went into work had a word with my bosses, who have been fantastic and through other sources we are doing a small book on what it is like to be a young renal patient, as jack is on his second tranplant, and for the people taht will ultimately care for them, as no one explained to me quite what it would be like and there was no where i could get any info at all, it was all guess work, and i wish i was maybe better prepared, let people know that some nights the dialysis tube may burst and you have to get to the ward asap to have it changed and have antibiotic fluid drained in etc there are so many things that you never expect, anyway where was i, oh work, they have been very supportive, i feel so guilty sometimes not going in, i feel like i am stuck btween a rock and a hard place, jack could be poorly in hospital and i have to make the decision work or jack, what comes first, at first it was always jack, but now i have learnt waht is and isnt serious as you will soon learn later in this blog, its going to be a difficult year, i have told work what will happen and sorted out what i can, so i am sorting work, where the pets will go etc, hey maybe i will check i'm ready for it one of the days! anyway, jack is now on what they call capd, he has to do t 4 times a day a minimum of 2 hours between each session, it is going so much better it restricts your day more dont get me wrong, but on the machine our nights were disrupted anyway, which in turn ruined our days as we were that tired. so it was back to work for me, it was good to speak to people again! had to get use to it again, but it was good, and i am glad to back in the swing of things.

christmas and a happy new year!

so on xmas day jack was feeling really ill,he had to weigh himself everyday to check he wasnt overloaded with fluid from his night on the machine, or dehydrated if it had taken too much off him, so he had a dry weight we had to stick to, and each litre of fluid in him was an extra kilo, so we had to allow for the fluid it left in him, but on xmas day he was 4 kilos heavier, so was being sick, he was very dizzy and faint feeling, he was in a right state, he was very tired too, he loves xmas, we have a great time opening our presents, so i took him to his mum and dads, that was the plan and i was going to make lunch. at his mum and dads he got worse, we rang the renal ward and explained and they told us to take him up, his dad said he would take him so i could have half an hour on the sofa, i was shattered from the night before, they were gone for over 3 hours, but thankfully when he got there his favourite consultant was doing wrd rounds and he got to see him and he advised us what to do that night, to draw the fluid off by using different strength solution, so at least we got to speak to someone and had a plan, we all went back to ours and me and his mum and dad st at the dinning table ating our xmas lunch and jack lay on the sofa watching us, it wasnt the christmas i dreamed of, or jack dreamed of, he opened his presents in a haze, to be honest i was glad when xmas day was over, i was so tired i remember having a really bad headache, i wanted my bed, but i dreaded goingto bed, cause we never knew what would happen,on boxing day his mum and dad were doing a buffet and his brother and girlfriend were visiting, so we went round, but he was ill again as soon as he ate something he felt off and still very sickly, so we came home at 5pm and he went to bed and i sat downstairs and cried my eyes out, its was 5pm on boxing day, jack was in bed and i was sat upset on my own, when more than likely the rest of the world was having fun, what did we do to deserve all this? between boxing day and new year it wasnt too bad, a few alarms in the nights but we coped well,and on new years eve e stayed in, i did a little buffet, jack loves a buffet! so i did one just for him, then we popped round to see our neighbours to wish them a happy new year and sat chatting for an hour, it was nice, i felt like we had been out even though we had only been next door, we were so use to our four walls and the hospital, it was good to speak to someone that wasnt a nurse or a doctor. a few days after new year jack was rushed into hospital again, similar kind of stuff, so he decided no more, he didnt want to go on the machine again, he chose to go onto capd, which was alot gentler.

apd didnt work

well the machine maybe wasnt the bast choice after all, yes it gives you the dat to yourself, good job really, your are that knackered from the nights you need the day to sleep, i am sure for some kidney patients it works great, but for jack it started to become a nightmare, as the fluid went in he was ok, then when it started to be pumped out it got very painful, he could feel the sensation of something pulling in his peritonium(near your tummy) the pain sometimes was so bad we had to switch off the machine, and what could we do then> your guess was as good as ours, the ward that look after him is a day ward 9-5? so what happens to patients if there is aproblem in the night? the helpline number is purely for technical support for alarms, so basically we were stuffed, we rang the normal renal ward, they werent sure what to do, but if we wanted we could take the amchine in to them and they could"have play around with it" their words not mine, i;d rather not! say they make it worse! when it got to the morning we went to see the nurses that look after jack, they changed his programme, so we would give it another go but oh no it was worse than ever, jack woke up in horrible pain, his face was nearly purple he was in so much pain! he was doubled over in pain, i had to quickly get the manual to stop the dialysis, he said the pain was in his arms and chest and he was gasping for breath, i was really scared, i rang 999, when the paramedics arrived they got him on a ecg machine and treated him for a heart attack! it was awful, i have never been so scared, i felt helpless. so it was trip to the hospital, jacks mum and dad followed on in the car, at the hospital they said it could be reffered pain due to the pump on the machine, and that jack could be sensitive to it, or it could be a heart problem, as many renal patients get heart problems, that paniced jack, and was the last thing he wanted to hear! the renal doctor came to see him and asked us to give it another go on the machine, oh good i thought, here at the hospital,and they can see how scary iy is, but oh no, it was time to go home, so we did it in the day that day, so that there was someone we could speak to if we needed. they changed the programme on the machine to a tidal programme, so the fluid would flow inand out and so shouldnt hurt when it came to pulling the last but of fluid out, cause it would always leave some behind. that day it worked ok, some twinges, but jack said it was bearable, at last a good nights sleep cause he had done his treatment in the day. we shold have known it was too good to be true! a couple of nights later it happened again! ambulance again, he was passing out in pain, it was awful but they wabted us to keep trying, just your body getting use to it!, it was christmas time and we were both so tired i felt so stressed and down my doctor had signed me off work, i felt awful being off work with stress, i didnt tell my mum and dad, i was suppose to be able to cope with all this, i felt like i was useless, i didnt want to be stressed and depressed, i couldnt help it though, we just wanted a nice christmas, but xmas eve in bed was anither long night, jacks foot had swollen up! we didnt know what it was, we rang nhs direct explained everything to them, they thought it would be gout, we thought jack had broken his foot it was so swollen and sore, but he hadnt done anything to it so we didnt understand, as he was on his machine they said they thought it was more important to stay on the machine and do his dialysis and out up with the pain in his foot! so we did just that, so hardly slept.

the training and the start of dialysis

so now jack has his dialysis tube, and we are ready to go, we turn up for our training, should be fun, we went through all the usual stuff you expect, they tell us about peritonitis, scary, but as long as everything is done right it should be ok. we have just had the bedroom gutted at home an re done by our 2 dads, so everything even the bed(bought gratefully by my mum and dad) is brand new, jacks dad was at our house every weekend and evening until all hours doing it, but there should be no bugs in there everything is nice and new. jack is having apd, which is a machine he will connect to each night and it will work for 9 and a half hours, pumping fluid into him, then taking it away and this should take out some of the toxins that his kidney now isnt doing, what a complex machine, who invents them, clever bods! the first lot of fluid went into jack at the hosital when training and he felt ill, he was very sick but after the initial dose he started to feel ok, it took a while to get our heads around but we had instructions wrote down it took us the 4 days of training, then the day had come for darrens nurse to bring the machine to our house, that was the scary bit, it was left to us then, but we were confident we would be ok. for a few nights it was, then in the night the machine would alarm, we sat there at 2am with the troubleshooting manual, working out what to do, back to bed, oh its going off again, we dont know what it is this time, so we ring the 24 hr helpline that is on the machine, they will get a technician to call us asap, an hour later we get a call, and it gets sorted, but the night has been along one, disturbed sleep all night, and then you don't sleep the same afterwards like you are waiting for it to alarm again, and all through the night you can hear the machine doing its work, its not really loud, but in the still of the night when it is very quiet you hear everything that your not use to. ina moring we have to disconnect jack then i have to take the fluid bags downstairs and empty them, with my bad back this wasnt fun, my doc is sending me for xrays, to see what is wrong, inthe meantime i have to rest it, how can i? how else am i suppose to get 5 litres of fluid down the stairs, magic! and like i said a bad back or chronic renal failure? i know what i think is worse, so we get on with it, we are a good team me and jack, good job really, although i have to say that we were very very tired and tempers could rise sometimes, over ridiculous things! but we always sorted it out, it was the situation that made us like that, not eachother, and as long as we kept that in mind it was ok, the machine kept us awake, my back kept me awake, and then thinks got worse

from now on

well it had got to november my partner was desperately ill, and needed to be on dialysis, so the operation was planned, i had a bad back at the time it was killing me, but when i think about what he was going through how could i dare moan, i think at this stage we will give my partner a name rather than keep writing partner, so we will call him jack, (i am not using his real name, so if anyone out there called jack has been through th same then it is all just chance) so we took him to the ward in the morning, we had a letter, be there for 7.30 am to get your bed! we were there just before 7.30, and no one turned up until 8am! so jack had to sit on the floor, he was too ill to stand! they told us to call the ward at 7 to check the bed was available, we could here the phone ringing through the locked doors of the ward when we got there, so its a good job we drove up when we did, as no one would have answered until 8am anyway! how pathetic is that! his op went ahead in the morning, when they wheeled him away i cried my eyes iut(so god knows how i will be when it comes to the transplant) when he arrived back on the ward he was very sore, and he ws still very shakey, he had been shakey for a couple of weeks, as he had a very low heamoglobin and had no iron stores left? so was having iv iron too, but then he got so ill he was addmitted to hospital and was given a blood transfusion, to try to build up his red cells, it was all a bit of a nightmare if i am honest, he couldnt even walk to the bathroom, he was so ill, he was like an old man lay on the sofa, he didnt hardly eat or drink, its like he was wasting away, thankfully they did sort him out, but what annoys me is that they let someone get to that stage before they do something, maybe if he was monitored closer, ie, having his bloods done more regularly it wouldnt happen, we ring up to ask if he can have his bloods done and we are asked why? well if we dont then you wont ask and the next time he will get them done is when he is at deaths door again, but go regurlarly if there is a problem and hey the nurse says"are you stlking me or what", hmmm what compassion!

having dialysis

so now it was time for dialysis, my partner was taken into hospital for an operation to have a tube inserted in his stomach, as he would be having capd dialysis, where dialysis fluid is drained in and out of his peritoneum(not sure if i have spelt that right) rather than being done by cleansing the blood through a machine which is want i thought of when i heard dialysis first mentioned.

when it all started

hello everyone, well where do i start, i thought i would do a blog for you all to read, hope you find it intresting, if you dont thanks for looking anyway.i thought i would let everyone know what it is really like to have to live with an illness that can turn your world upside down, renal(kidney failure) before i came across it i knew no different, and if someone could have warned me of the ups and downs and stresses then i may have been prepared even better, and some people may moan"its not even you that is ill" as it isnt its my boyfriend of 5 years, and whilst i appreciate that he is the one feeling ill, having operations, medication etc, it still affects me emotionally and mentally ina big way, but some people dont look at that and only notice the patient. well where do i start? me and my boyf have been together for ages and ages, not long after getting together i learnt that when he was 17 he had recieved a kidney transplant, i have to say i found that amazing and thought he was very brave, and if it wasnt for his scars i would never have known any differnet he did everything everyone else did, and life was fantastic( it still is its just that we have more stress to put up with now) then a couple of years ago darren started to be unwell, he was sick near enough if not every day, it scared me at first to see him like this, but it was something we were to get use to, we had bought a house together and the day we moved in i remember having both sets of parents helping us out and towards the end of the day he felt uwell, that night he was sick again and ther was blood in it, he said he would be ok, then that night he couldnt stop being sick, he could hardly stand and was lay on the bathroom floor telling me to call an ambulance, i was so scared, obviously my prtner was too, after time and tests at the hospital we were told his kidneys were not working as well as they had been, we knew this would eventually happen, over the coming months he had various testa and was told he had ulcers, due to the many tablets he had to take, which he couldnt suddenly stop taking, they kept him alive after all, so instead he was given some further medication to try and help the ulcers, he felt well for a while, but he wasnt as he use to be, he was tired very very quickly, and we had appointment at the transplant clinic and were told that he would soon be needing another transplant, the news came as a blow and he was upset but realised it was for the best, they said it maybe upto 2 years away, and then he would go on dialysis and wait on the transplant list for a donor, from this point he was ill regurlarly, that christmas was quite nice(2005) and we brought in the new year of 2006 on a happy note, darren started to feel unwell again, and was very tired, couldnt do much, was sick all the time, and 2006 turned out not to be a good year, in the january our cat was run over and killed, in the february our family dog died, then in march my grandma died my grandma it was a horrible horrible time, my grandma was adnmitted to hospital in the february, after a fall at home, we didnt dream for one minute that she would never come home, she was left on a ward that didnt deal with what was wrong with her, they did numerous testa and told us at the beginning of march that she actually had cancer, in quite a few places and all they could do was make her comfortable, and that following week she died, it was horrible. i was in work on a monday and my mum rang me from the hospital to say that they didnt think she would make it through the day and we could be with her if we wanted, i felt so guilty having to go to my boss to ask him if i could go, i had had so much time off with my partner being ill, he was understanding and said if i had to go then go, so i rang my partner, we mad the 1 hour drive to the hospital and was taken into a room where my grandma was, they had given her her own space now, she seemed in pain even though she was asleep, they gave her morphine to help, and she then looked more peaceful, we sat there all day, and a female chaplin came in to say a few words, as my grandma was a regular church goer, and we knew she would like that, my grandad(her husband) had died when my mum was just 14 so i never did meet him, but the chaplin said she would soon be joining him and she would be happy again, as she had never ever been involved with another man since he died. she also had 2 daughters that had died before her, bith had commit suicide, one when i was 2-3 years old, so i dont remember, one was just in feb 2004, and it hit my grandma hard, some of the family decided to keep it from her, then she came to visit me in my new house and she asked me the question, i couldnt lie, me and my grandma had a very close bond, so i sat with her and explained what i could, my grandma blamed herself and said"i couldnt be a very good mum if 2 of my daughters have commited suicide", none of it was ever her fault, they were both for completly different reasons and i do hope they are now at peace, i believe that my grandma never really got over that and was never the same again, anyway i have gone well off the mark havent i, well that monday we sat by her side it got to about 10pm and she was still with us, it had been along day, and we had to go home as my partner needed his medication and sleep too, as he was poorly with severe anemia and low heamoglobin at this point, so we went home and tried to get some rest and agreed to return as early as possible, so that my mu could stay with her overnight and then we could sit with her the following day whilst my mum went home for a rest, that night i tossed and turned and couldnt sleep i had the worst headache ever, so i stayed downstairs so my partner could get some kind of sleep, we travelled back the next day and my mum went home for a few hours rest, it was along day,and my grandma just slept, i didnt want to leave her, i was scared of her dying all alone, i wanted to be with her, my mum arrived at 5 ish that day, we had been in touch all day on the hospital phone, when she arrived we assumed it would be like the night before, so we agreed we would go home for the evening and come back in the morning, so we drove the hours drive home again, we had just walked in when the phone rang, it was my dad, he spoke to my partner and told him that my grandma had died half an hour after we left, i was heartbroken i had sat with her for 2 days solid and the one time she needed me to be ther i had already left, i was devestated. we got straight back in the car and to the hospital to say our final goodbyes to her, she always told me she didnt know what she would have done without me, as when i lived close by i did her shopping, took her places etc, we sat and chatted for ages, and she came to stay with me for nearly 2 weeks whilst she had her new bathroom fitted, we were very close and she told me i was her favourite, but she loved all us grandchildren i know that, but everyone has a favourite everything. they next few days were a blur, my partner was poorly and rushed into hospital and it was looking like i was going to the funeral on my own without him, we wanted him to carry the coffin with my brother and 2 cousins but he was so weak we knew he couldnt do that, thankfully he came out of hospital 2 days before the funeral, he was still very pooly but me and his parnets went to my parents and waited for the funeral cars to arrive, when the coffin arrived i couldnt help but cry, i was so hard to think that my grandma, the woman i loved and respected was now dead and that i would never see her again, it didnt seem real, we had 2 lovely songs played and my uncle did me a cd with them on, so i can listen to them when i want to, not that i can without crying! after that point my partners dad decided he would donate a kidney to my partner so he didnt have to wait on the list, it was the good news we had been waiting for, his dad was just so fed up of seeing him unwell and desperatly wanted to help. so the tests were to begin and they were hoping that he could have the transplant before he needed dialysis which would be great, that year(2006) was up and down , we were always being rushed off to hospital in the night etc, it was very stressful,then my mum and dad decided to take us to whitby for the weekend to try to destress us, the day before we were due to go the hospital deciced taht we couldnt, my partners calcium levels were too high and he would be ill, so my mu and dad went without us and we ended up in the hospital for a few days, it seemed everything we did went wrong, we didnt have any luck what so ever, after that it got worse my partners kidney function got worse and they decided that he needed dialysis again, we didnt want to hear that but we had no choice we knew our lives were now about to change alot