April 18 2011
1
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/2011
20:59
Had my appointment through for my op on 20th May so time to prepare myself. lol. Started to feel bit weak yesterday and just thought i had some fluid on but it got worse overnight so went on dialysis early this morning. Felt quite unwell on machine, realised it wasnt fluid but that i was coming down with a bug so had no option but to come off early and went straight to bed with some tablets. My head was pounding and i couldnt even get upstairs without being on all fours. I ached from head to toe, hurt to move my wrists and my hips felt like I had been doing hula dancing all day. Managed some tomato soup and a ribena lolly to soothe my throat which had started to ache now. Im hoping im better by tomorrow but if not dialysis should hoepfully remove the rest of the bug. Fingers crossed.
My hubby has been great and looked after me as usual and mum run errands for me and Jasmine has been giving me kisses thinking it will make me better. I love my family. x
Button holing has had to stop as the pain is too much in my arm and I cant go in the same place as one day its ok and the next totally unbearable. I will have to wait till after my op and see if the pain resolves itself.
Going get some rest now
TTFN xx
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April 15 2011
5
15
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/April
/2011
23:05
Dialysed on Thursday and boy did i need a good session after the terrible previous one. I had extra fluid on and just felt 'crap' for lack of a better word.
So this session i managed the bigger needles, got my normal pump speed, increased dialysate flow and dialysed for the full time which = feeling alot better.... really needed this better session and i just hope this is a sign of things are going to get back to normal. Still waiting for date for angioplasty but they say patience is a virtue and there are plenty of other people waiting for treatment as well as me. Ankle still really painful at the moment but Jasmine has become ill again so taking my mind of it. My little girl is really going through it at the moment i just hope we can get her sorted.
TTFN xx
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April 12 2011
2
12
/04
/April
/2011
11:23
So the last few dialysis sessions haven't been the greatest. Had to keep on using the smaller (15g) needles and the pain has been terrible. Managed to get 5 sessions done for the V site button hole but failed today through the amount of pain and just when i thought i was getting somewhere. Pump speed on machine is slightly lower so not dialysing as well, will just have to wait for the date to come through for my op. Had monthly blood results back the other day and they were terrible, haven't been that bad in over a year but i suppose i should of expected it with not dialysing as well as normal.
Went for appointment at respiratory medicine yesterday and think everything ok there so just keep using my inhaler as and when needed.
Since finishing work i have managed to lose 14kg so am really pleased about that so i have got something positive at the moment.
Managed to spend an amazing day at Alton Towers with Jaz the other day, suffered at night with my ankle which i really need to get seen too as had a pain there for over a year and now its quite bruised with a lump and usually swollen.
On a good note Chris' blood results are better just need to sort his chest pain out and jaz is trying a new inhaler...so watch this space..
TTFN XX
Published by livelifelisa
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April 4 2011
1
04
/04
/April
/2011
23:48
I was still ill this morning so chris had to get Jaz ready for nursery and then i just drove there and he took her in. Spent the day relaxing then went on dialysis this evening. Needles painful as usual so I had to use the smaller 15g ones but still managed to go in the button holes so better than nothing. Managed to post some pictures today of my ops and stuff if you havent got a weak stomach please feel free to take a look. Chris is suffering at the moment he has been having pains in his chest for over a year now and we keep going back the doctors and just end up getting more tablets, tonight the pain was really bad so tomorrow when he goes for blood tests im hoping we sre going to get some answers as i would hate for him to be ill like i am. Would never put anyone through suffering with their health. You dont realise how lucky you actually have it till its taken away!!!!
TTFN x
Published by livelifelisa
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April 3 2011
7
03
/04
/April
/2011
19:47
So I saw the surgeon on Friday and he thinks the narrowing is definatley causing the pain when needling so I am going in for plasty, just got to wait for the date to come through. Was very anxious about this but I went on a night out with old work friends which helped me relax. Started to feel a bit unwell when I got in that evening (even though I was only on lemonade) and by today i feel terrible, not sure whats going on but feel so sick and quite dizzy. BP is normal so not sure if I havegot a bug so will just have to see. Dialysis session on Saturday was not so good the V needle was very painful again which makes me realise the op is necessary now and so a means to an end. There is always going to be bad days when you have no functioning kidneys sometimes you forget how much work they really do and when i have a "rough time" it doesnt usually last for long hopefully.
Im hoping to start writing about the positive things again soon like i have most of the time which my life is worth living for!!!
TTFN
Lisa
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March 31 2011
4
31
/03
/March
/2011
18:33
So its the second day of button holing and i start with a positive attitude.... but it soon goes down hill. I manage to get the first (A) needle in but not sure if exactly the same as last time so I need to make a really good mental note for Saturdays session. Then when I go to do the second (V) needle i get my usual pain and the needle has to come out!!. I tried another needle but still painful so i just have to try and bite the bullet and go for it, trouble is I don't think its in the same hole as last time therefore not button holing!!!......
Not sure if i thought this was just going to be straight forward and answer all my problems but it has really got me down now. I dont expect sympathy i just feel like i want to curl up and forget everything when the pain hurts like this and i feel defeated.
I have an appointment tomorrow with the vascular surgeon to see if they want to operate on my arm and im dreading it at the moment it just seems one thing after another...i'm usually so positive but when the chips are down and i know i will never be 100% well again its hard not to have bad days..especially when im lying through a hours of pain in my arm.
TTFN
Lisa
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March 29 2011
2
29
/03
/March
/2011
11:32
Well the day has finally arrived when I will be starting the button holing technique.
One of the nurses is going to come out to me and we will decide on two new sites and then it will be up to me to make sure the needles go in right. Once in tI can then crack on with the 4 hours dialysis and see how it goes. The following day I will have to put another needle in the same site exactly no deviating away from it in the slightest but I won't need to dialyse, this is to just form the track. Then I will do this on and off for the nxt 10 days and hopefully the button hole will of been formed (bit like an ear piercing hole)...then hopefully I can use blunt needles as the hole should be already there. This will help preserve the fistula and I am hoping less pain (fingers crossed), also because there is less trauma i should be able to increase my dialysis to the 6 days a week then........will let you know how i get on.
TTFN
Lisa
Published by livelifelisa
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March 25 2011
5
25
/03
/March
/2011
22:53
I have been on Haemo dialysis since 2004 when i started with acute renal failure due to aHUS. I had an unsuccesful transplant in 2006 due to the aHUS being recurrent and in effect 'killing' the kidney in a matter of weeks and therefore have not been put back on the transplant list. I have tried CAPD which did not suit me but I thought I would give it a try anyway. In 2007 I gave birth to a little girl Jasmine who was 9 weeks early due to my condition but was still classed as a very successful pregnancy. In 2009 I started to dialyse from home as the 3x a week sessions at the hospital were not sufficent enough to prolong my life due to my weakness with the fluid and diet restrictions.. My husband trained on the machine and we had a room built and at the time i was very nervous. I cannot stress enough now how it has improved my life not only from the extra dalysis i get but from the less travelling to and from the hospital and the stress of under staffing on the wards etc..
As of tuesday i will be starting a new technique on my fistula called 'button holing' so am quite nervous but also know i need it in order to be able to increase my dialysis even more to 6 days a week. Watch this space...
TTFN
Lisa
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