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