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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