Well it's now 2014....who would believe it huh! Still no going around in our own individual space vehicles. Still no houses in space. Still things go on....
Not much changes really does it. We have all this technology and still people are ill, still people continue to fight in wars, still people don't enjoy life.
Well I do! I must be the exception huh. I take life one day at a time, if today is a bad day, then tomorrow might be better, fingers crossed at least!!! That's if they don't lock up of course as they are prone to do...LOL!
So I wish you all a Happy and more importantly, Healthy New Year and let's see what 2014 unfolds for us all.
It's all over and done with now. I was quite worried about this one as I was told I would be awake for it. As I've mentioned before I've had Red Wee intermittently for a while now and with it comes intense pain too. It's not like blood clots just a red colour, sometimes darker than others. It's the pain that's not nice. It makes me feel sick and 'urggghhhhh' if you know what that feels like LOL!!
I asked the Surgeon what he could see and if it comes on camera, but it is his eyes only that see what is going on. He said that basically it's nothing to do with the bladder or the tubes to/from the bladder. It's my kidneys, they are shot. Nice huh!
Still as least I know it's nothing to do with the bladder and I asked about the cancer and he said he could see no cancer in there either which is great news. When you have cancer it's always on your mind if you find a lump, or something is just not normal. It always rears it's ugly head each and every time you don't feel 100%. I know it's not me as others have mentioned it to me too in conversation. It affects you all the time once you've heard those words "I'm sorry, it's cancer".
Yes, I'm back with the kidney Consultant again. I've still got red wee intermittently but it's kind of slowed down which is nice. I'm due to have my pre surgery assessment on Friday, yuck!!! Not looking forward to this at all.
It's making it all more serious and I honestly hoped it wouldn't have to get this far and that my kdineys would stabilise. Sadly they haven't.
Each time things get delayed I think it's OK, my kidneys aren't that bad. However this time Dr M (who is normally a polite gentleman) said my kdineys were basically crap. It's honest and says what it means. Not nice to hear that they are that bad though :-(((
I'm to start a series of Hep B injections before I go on dialysis apparently. It's for safety reasons. I don't need anything else to go wrong do I, I think I've got enough problems as it is.
So when I turned up at the surgery and was told it had been cancelled by 'someone' and they didn't know who or anything about it, I wasn't happy!!! I was to be starting dialysis asap and this was a major setback.
I was sent on a wild goose chase across to the Pharmacy in town, then back again as it was an 'order only item' and I'd have to wait for it to be delivered to them, then take it across to the surgery later to have it done by them. Why they don't keep them in stock I don't know. It's a fairly common injection for holidays etc.
In fact when I was in the chemist a lady asked me where I was going. "Dialysis" I replied. "Oh dear, sorry" she said. It's all a bit depressing isn't it now that it's getting nearer.
Anyway when I got back to the surgery I was told that St Helier had phoned and told me not to have it after all. It would conflict with some results of the dialysis stuff. I know nothing about dialysis, a new health subject I need to gen up on now.
So it didn't happen anyway and they still have my drugs in their fridge! Ooops!
Well it's certainly real now. Talking about regional blocks and not feeling anything but being awake. Scary indeed.
I really don't want this but I have no choice I know. I had to have quite a lot of tests done, blood test (done in the hand which hurts big time!), urine, BP, ECG, ultrasound, see the Surgeon, see the Consultant, see the Access Team, see loads of people!
I was quite whacked out when it was all finished. Still it's all done now and I've just got to wait to get the date of surgery. Sounds quite blase but I'm not. As I said it's a scary time.
Oh yuck, not looking forward to this one either. My kidneys are so bad that I won't live to see my next appointment if they wait. That is serious and really puts it in perspective doesn't it.
I had to wait ages after my appointment time for them to do the line. You are awake when they do it which I don't like but they need to talk to you at the same time. Making sure it is in the right place.
You are under a huge cover like a big tent and they work through the hole in it on your neck and the veins. Not nice, but it's the only way of getting an emergency line in.
I won't lie about it, it did hurt. Especially when she had to massage my neck to get the line to go in straight (kinky veins!). It did hurt then and I was just hoping it would all end soon. Several people had told me it takes 15 minutes and doesn't hurt.
I was in there for an hour and it did hurt believe me!!! Not really bad pain, but pain none the less. I got so used to it all with the cancer and other problems I thought it didn't bother me anymore, but I think I get more concerned about it now before it happens.
At last it was over and I could get back up. A bit wobbly on the old pins, but I just took it slow. She said I'd be going to dialysis afterwards.
I wasn't ready for that!!!!! Then it turns out someone has nicked my space so I won't be going. Phew kind of relieved about it to be honest. I just had to wait for transport home.
On Thursday I'll be having my first dialysis session. Well you can imagine how I feel about that.....
It's here. My first time on dialysis. It's all very new and I feel like a beginner again. If it was cancer, I'd be fine as I know a lot about that now, but dialysis nothing.
Three times a week, Tuesday, Thursday and Saturday. Up to four hours on the dialysis machine, two hours each side for transport.
When I go in the Waiting Room I was kind of nervous. No one really spoke and it was quiet. Oh dear, is this what I have to look forward to every other day in hospital. I hope not.....
After waiting, I was called into the Dialysis Room. It had about 8 beds/chairs in it and three single rooms with machines in. I was put on Bed 7, well chair really. I took off my coat and put my bag and crutch on the chair and waited. A couple of women were crying and complaining. One was shouting. It's not good on your first day to see this. I really wondered if this was it. Was it going to be this bad each time? I hope not.
I was introduced to a Nurse and she did all the machine settings, then another one came and connected up my lines. I said it was my first time.
She said not to worry, it's not always like this which put me at ease. I hoped not.
No one said a word to me apart from the staff. Very strange.
I wasn't sure how I would feel. I could see the lines at my neck connected to the tubes and machine and it was weird, seeing my blood going into the machine so I stopped looking.
I really hate the cables when I touch them, my blood makes them all warm and I try to avoid them at all costs! John says all blood is warm but it's normally inside and we don't notice it. He think's I'm odd about it as I love all the blood, death and killing programmes on TV, having watched autopsies etc.
When it's your own blood/body it's different I find though. I don't like it and that's it. So I try to put my arms on the chair arms and avoid touching the cables.
As this is my first time, it's only 2 hours to see how my body takes it. I'm a bit concerned as I need to go to wee a lot and they can't just shut the machine, so I was keeping my fingers crossed!!
Phew, it went OK and as soon as I came off the machine I went to the loo. It was good to know I could do the two hours. I'm concerned about four or more hours though!!!
There are lots of conflicting information from different Nurses. I never know what one is right as they are all different. You'd think it would all be the same but it's not. I'll just have to ask around and hope for the best then!!
Happy Birthday George! Hope you like the Star Wars card I made for you!!! At least you got yours on time, Rosie's was a little bit late. What with everything going on, it just didn't go out on time.
Second dialysis now. It still feels odd and it is certainly life changing. More so than the cancer treatment as this is every other day for the rest of my life. You can be on for four hours or more, but as this is my second time it's 2.5 hous for me. I've still got red wee and I mentioned it to the Nurses and they said I could wait for the Doctor.
This might mean I'll miss my transport home though so I waited a while feeling more worried at the time. My transport arrived and I asked them what to do. They said "Go home and if you feel bad dial 999". I wanted to know which would be best, should I wait for the Doctor to confirm anything or just get the transport home. They couldn't advise me, so I made the decision to go home.
Unfortunately I had a long journey as there were three others in the taxi and they all lived the opposite way to me. So instead of taking me first, he went all round Farnborough, Farnham etc. I didn't get home until 1.30am!!! Yes 1.30AM!!!! Boy was I tired then! Went in, had a short chat as Mum and John were still up and then headed up the hill to bed(fordshire!).
At least someone spoke to me this time!!!! It felt better that way. I didn't feel such an 'outsider'. Maybe they don't speak to each other much. A lot of people sleep whilst on the machine. You get very cold sometimes. A friend gave me a lovely shawl at Christmas so I might take it with me to keep me warm. Sometimes you'll be hot and sometimes cold.
Every time it's different.
Oh yes I forgot to mention, when they take you off the machine and they inject something into the lines it makes your teeth itch! They feel weird and you get this tingly sensation and a horrible taste sometimes. I'm trying not to think about it, as then it'll be worse each time. If I just concentrate on something else it won't be so bad hopefully. It's not nasty, just strange!!
I'm now going to do three hours on the machine. It's getting longer each time. I've been reading, word puzzling, crocheting, watching tv. It seems so long each time. I wonder if you ever do get used to it?
I remember seeing a young man when I was having cancer treatment, we used to collect him from his home and take him to dialysis and learnt that he went three times a week and thought how awful it must be. I didn't realise that it would be me later on....
Happy Birthday to you, my dear dear friend! I hope you have a fantastic day, you really deserve one my Angel...!!!
Also I'm back at the Hospital as an inpatient again. This time to have the Fistula operation. Not looking forward to this again. The regional block and everything. Going to be awake for this....yuck!!!
The day of my operation. I was finally wheeled down to the Operating Room in my ward bed.
I'll keep this brief as it's not nice! I was given 30 full minutes of injections in my arm in various places. They then asked me say if my arm was going numb. It sure was, very strange. I then had to say if I felt some cold/wet items on my arm. I didn't feel it at the top of my arm, or the fingers, but felt some areas in the middle. They asked again and I said I could feel it. More injections were done and then I was OK to go.
After what seemed like forever waiting for the surgeon to finish the previous patient I was finally wheeled into the Operating Room. It was very high tech in there. A lot different from other Operating Rooms I'd been in!!
They helped me move onto the Operating Table and lined me up so I'd be in the right place. My arm was put out at the side and they asked me to touch my nose. I tried, but it just flopped in front of me....really weird sensation that!
Finally, the surgeon came in and I had the mask put on me and he started the operation.
Aargghhh what was that?!?!?! I felt the cut. Aarrggghhhh another cut, then another, I couldn't stand this. I said I could feel him cutting me and they were obviously concerned about it. It wasn't nice and I said I didn't like it. I heard them say they would give me some medicine in the cannular to make me drowsy so I wouldn't notice.
The next thing I know is I'm waking up and turning my head slowly looking around. The room is totally white and there is a dead body lying next to me, well she looked dead to me. There was no noise and I honestly though I had died and was in the Morgue!!!!! Scary!!!! This time I hadn't made it through the operation and was dead. My time was up. My positivity hadn't worked this time and I'd died.
Then I heard someone call my name "Karen", "Karen......hello....". "Where am I?" I asked. "You're in Recovery Karen and the operation is all over".
That's a huge relief. I honestly thought I had died during the operation. "Is it all done?" I asked. "Yes, all finished. We're just going to let you come round a bit then take you back to the ward".
My arm felt strange. Really odd feeling when you can't feel it. I was told to keep it warm and not use it. The way it felt at the moment I didn't think I could anyway!
So I was eventually wheeled back into the ward and then they took my obs and I slept....and slept....and slept.
I remember asking the Nurses to call my Brother and Mum as I couldn't text them and then I nodded off again. I do recall they put my mobile on top of me, but it doesn't help when you can't feel things and are so drowsy I couldn't even focus on the phone buttons!
I was then taken to Dialysis. I am now up to three hours again. Different amounts are taken off to find the optimum amount for me. As my kidneys no longer work, the toxins are kept in my body until I have dialysis to remove them. It's this bit which needs to be adjusted until the right amount is taken.
I've had a few off days but nothing I can't cope with. I hope it stays like this. I've been told some days you feel OK and some you feel rough. You never know when it's going to happen. Hopefully and fingers crossed, I'll have more good than bad days.
I must admit, I didn't feel that bad before dialysis. Although it could be that my body just adjusted to it and I got used to feeling like it.
However during dialysis today, I was put into a side room on my own. No alarm button in there but it should be OK, has been before.
Of course, it wasn't. I started to feel clammy, sick, light headed, drowsy, all at the same time. No one was coming in and I couldn't get anyone's attention. Finally someone went past and I called out.
They realised my blood pressure had gone very low and I was told to lie flat and just close my eyes. I can't lie totally flat as my back starts to ache, but they raised the head a little bit.
I felt so odd, and was lying there hoping it would go soon. After quite a while, it finally did and I was still wobbly when I got off the machine, so took it slowly and walked back to the ward and sat down again. I went to sleep again and was still drowsy after the operation I suppose.
Yay!!! I'm going to be allowed back home. I don't get too excited now when they tell me as it never happens quickly! I was ready to go at 6am in the morning, but didn't get home until mid afternoon/evening time! So now you can see why I don't get too excited about it!
I've been given a booklet of what to do/not to do with my arm. I've got stitches in there so they have to be looked after too. I've also got some exercises to do when the swelling goes down. Also I've not to lift anything up with that arm.
It's made me realise this is now VERY serious and as the Nurses say I need to look after it, as it is my one lifeline. If it gets damaged them I'm in trouble. I know I joke about my health issues, but this is really serious now and I know it.
OK, here's a bad day. I felt sick a lot today and just not myself.....it's one of those bad days they talk about.
My day off and where am I??? Yes, another hospital! This time for my Diabetic Eye Checks. I was told last time that there are retinopathy changes in my eyes. I hope they've not got worse.
Off for a nice treat of dinner out next. Might as well make something nice out of it...my day off!!!