False alarms
* August Bank Holiday weekend 2016 I got my first call on the Sunday, we spent all day at the hospital and nothing came of it - the donor didn't die in the alloted time, so the organs weren't viable. I was ok on the day, I know these things can happen, but the following day I was devastated.
* I was called again in November while at work and told I was the stand-by for an organ. All day I couldn't eat and at 10 o'clock that night I was phoned and told to 'stand down'.
* On Christmas Day 2016 I got a call at 4.45am, and we spent Christmas Day at the unit, got as far as chest x-ray, blood tests, ECG, chat with the surgeon, and signing the consent form. Around 3pm we were told that the 'donor had withdrawn' which we thought might mean that the donor relatives had refused donation. Whatever it meant, we left the hospital for the 3rd time disappointed and very tired.
* I was beginning to dread the phone ringing in the small hours.
THE one
On Monday 9th January 2017 the phone did again ring in the small hours - 5.45am, it was Brian from the Transplant Team again telling me I was first choice, not to do anything just yet but to wait for a second phonecall. I got up and pottered, had a cuppa and some breakfast and just before 8am the phone rang again and I was asked to get to the hospital. Hari came home from work and we set off.
Back to Ward 9 and asked to wait in the little office at the end of the corridor. We were there for most of the day. I had an ECG and bloods taken. A student nurse came in to do my admission paperwork. They decided not to send me for a chst x-ray as I'd had one Christmas Day, and they used the consent paperwork I'd signed then too. The day was spent with nothing to eat or drink and trying to doze on the bed in the office. A doctor came and chatted with me telling me everything that could possibly go wrong during the operation which was a scary 20 minutes.
Around tea-time we were moved from the office to a curtained area where an Italian nurse came and put a canula in my arm. I take Warfarin cos I have Atrial Fibrillation and they needed to give me Vitamin K to reverse the effects of the warfarin. I cried when she put the canula in, not cos it hurt but cos I was tired, hungry and scared stiff someone was going to say, its not happened and to go home.
Not long after that we were shown to one of the little side rooms on the ward. One of the theatre anaesthetists came to see me to ask some questions and it was only at this point and thought bloody hell it might be going ahead. Hari and I payed for the tv for 3 hours and watched Emmerdale and some other stuff to kill time. I nurse came in with a gown and some compression stockings and a red hospital bracelet, so I put them all on except the stockings were cutting off the circulation in my legs so I took them off. At 10pm a porter came and took me to theatre with Lisa the nurse, Hari came with me as far as theatre, gave me a kiss and left.
I started to get panicky and tearful (I always do at this stage - I'm such a wuss). In the lil room outside theatre I was looked after my a team of 4 women which was nice. They battled to get a canula in my arm and had many attemps covering me in bruises and making my cry (which is easy). Eventually I asked if they could put one in my foot as I can't feel them and they did! Once I was on the operating bed and they'd fixed all the monitors to me, an oxygen mask was put over my mouth and nose and they injected some painkiller to the canula in my foot. Then they said 'We're giving you the second fluid now, tell me when you start to feel a bit different'... a couple of seconds later I started to say 'I'm feeling a......'
At 7.30am I woke up in recovery with a new kidney :)
Friday, 27 January 2017
Catch up...
Hi all,
I haven't been here and posted anything for a while.
Well. I finally made it to doing home dialysis. After 9 long months of going to the training unit 3 times a week, I finally made it and was doing my dialysis at home. I guess that's a reason to celebrate but every time I think "yayy", I then remember I am still doing dialysis 3 times a week, nothing has really changed. Well, I dont have to drive to the unit; that's changed.
Things have been going great at home, my first day was a bit traumatic with the machine alarming, technicians having to come out and various bits & pieces but I had the support of one of the community nurses so it was all ok in the end.
The support of the nurses at the unit was amazing. I knew I'd miss them once I was home and I did.
I haven't been here and posted anything for a while.
Well. I finally made it to doing home dialysis. After 9 long months of going to the training unit 3 times a week, I finally made it and was doing my dialysis at home. I guess that's a reason to celebrate but every time I think "yayy", I then remember I am still doing dialysis 3 times a week, nothing has really changed. Well, I dont have to drive to the unit; that's changed.
Things have been going great at home, my first day was a bit traumatic with the machine alarming, technicians having to come out and various bits & pieces but I had the support of one of the community nurses so it was all ok in the end.
The support of the nurses at the unit was amazing. I knew I'd miss them once I was home and I did.
Thursday, 3 December 2015
What a week...
Hello again all....
Monday was an ok day. I went to work as usual, came home and was up at MRI for 5.15pm for my 5.45pm appointment for a CT Scan. This had been requested by Mr Tavakoli (transplant surgeon) and Dr Bubtana (Dialysis consultant) and was a scan of my iliac vessels and was the last test to get me activated on the transplant list, so an important test. When it came to getting a venflon in my arm for the contrast to be injected, it took 2 attempts and a smug doctor to get it in, and much bruising ensued. But the scan went ahead, 15 minutes of lying flat on my back with my arms above my head been moved in and out of the doughnut shaped scanner. I slight problem with profusely bleeding all over the changing room happened but I got it cleaned up and went home.
Around 10pm that night I started to become really itchy all over my chest, neck and lower half of my face which went on until I fell asleep a couple of hours later.
The following morning it was evident that something was wrong, I looked like a frigging beetroot and the itching - aaarrgggghhhhh. Anyway I went to work, trying not to look at people so hopefully they wouldn't notice the beetroot. Then off to dialysis. They were quite concerned and got the Nurse Practioner to come and see me. She said she thought it was a reaction to the contrast I'd had injected.
I was feeling pretty sorry for myself at this point, when I was told I was moving up to yellow needles which were bigger, that didn't help my fastly plummeting mood AT ALL.
Needless (ha ha) to say the first needle went in ok, my arterial button hole seems to work no problem. The second one however didn't, and this was trying it in the button hole they'd started creating on Saturday by putting the plastic biohole in it which had been uncomfortably sitting in my arm for 3 days. I was told this never failed; always worked but mine didn't. What it did do was cause a whole load more bruising and swelling. I started crying because the pain was excruciating. Sometimes I get so down with it all that stopping dialysis seems the only solution. I realise that stopping means dying slowly but the pain from the needles, the numerous attemps at needling at EVERY session is so soul-destroying and frustrating. Eventually as a last resort they went in the site lower down my arm under the arterial site which is only about 1 1/2 cm from the successful site which is too close, but it works so use it.
Once I'd calmed down and dialysis was well under way I then had to get hold of Hari to get him to get me some Piriton tablets before he went off to yoga for the itchy redness and now a rash on both arms. I got home and had the antihystermines and then chilled.
Wednesday I went to work as per still red & puffy but started to feel poorly pretty quickly so I rang the dialysis nurses and after hearing my symptoms Diane insisted I went to A&E. I protested but still she insisted. So once Hari was home from work off we went. It was packed :( First we saw a triage nurse who assessed me, then I had blood taken and then I saw a registrar who after checking with a renal doctor gave me 8 x 30mg steroid tablets and 6 more for tomorrow and instructions to rest, then we went home. An hour later I felt exceptionally sleepy but less red & less itchy.
This morning I woke up feeling great, not red, not itching. Great. An hour later the itching, & especially the redness was back, I had a bath which probably didn't help cos the heat only exacerbates it all. Diane, my favourite dialysis nurse then rang me to see how I was and to say they had a bed if I wanted to go in early.
I got there about 12.30 and they'd done my machine & set the table up so I had to do nothing but my obs and wash my arm, which I duly did. A needle went in a treat with not much pain. B needle however proved as much of a twat as always and wouldn't go in so a 2nd site was chosen, right up by the crook of my elbow so I was given strict instructions to not move! Half an hour into dialysis as I was chilling & getting nicely comfy sudden pain started above the V needle and the level readings on the machine shot up. Melissa came running (literally) as she'd seen the panic on my face and confirmed it had blown. FFS...
Everything was stopped. Diane tried getting a needle into the hole used 3 times so far below the A (meaning if it was successful then the A & V connections would have to be changed) but it didn't work. Needling a new place was ruled out as I was bruised and sore and plasters were now covering most of my arm! Melissa went and got a machine from the other ward to do one needle dialysis, which I hadn't experienced so far. It needed lining & priming so I just lay there while Melissa sorted the machine, Diane kept a finger firmly on my bleeding arm and Gill kept us amused with stories of being a student nurse.
I was put on the machine and everything started swimmingly. I got half an hour before I started to cough and feel a bit rough. Gill came and did my blood pressure which was fine so off she went again. No sooner had she disappeared I started having chest pains and finding it difficult to breathe, so I reluctantly pressed my buzzer and Diane appeared. Within a minute I was laid flatter, the machine was stopped and I was on oxygen. It was quite scary. She did my blood pressure again and it had plummeted. I was taken off dialysis and my needle was removed. I felt really poorly, my breathing was properly laboured and I felt hot but was shivering. Diane said she thought I'd had another reaction to the one needle dialysis as it takes your blood out, cleans it and put its back and repeats the process over and over where as 2 needle dialysis is a constant cycle of removing & cleaning all happening at once.
It took a good half an hour to feel right but then I felt incredibly tired, finding it hard to hold my eyelids up. Diane wouldn't let me leave the ward til she was happy I was fit to drive, and she went and made me a cuppa, bless her. She also instructed me to stay off work tomorrow again, as I need rest. I hate missing work. After she was happy with my BP and that I was safe to drive home I was sent packing.
What a bloody week. 2 reactions to 2 different processess which are meant to help me! The needles are more than enough of a bloody challenge I could well do without my daft body reacting to helpful things. I better bloody get activated on that transplant list after all this.
Sitting here typing this, I have no itching, no redness and no shortness of breathe but I do have a tiny cough still but thats probably the oxygen. I am slightly worried that by 3.30pm tomorrow (the time I took the first steroid dose yesterday) things might go tits up again but I have again been given strict instructions that if they do indeed go tits up I am to head straight back to A&E. Fingers crossed everything is ok tomorrow.
What a week. Thats quite a bit of scary shit when its happening to you. I hope it never happens to any of you. Stay safe blog readers, limit you salt intake and look after your KIDNEYS!!
To end of a good note though, the results of the bloods I had taken at A&E yesterday were posted on Patient RenalView and my eGFR has gone up from 9% to 14% so I guess dialysis is working..... as horrible as it is.
Monday was an ok day. I went to work as usual, came home and was up at MRI for 5.15pm for my 5.45pm appointment for a CT Scan. This had been requested by Mr Tavakoli (transplant surgeon) and Dr Bubtana (Dialysis consultant) and was a scan of my iliac vessels and was the last test to get me activated on the transplant list, so an important test. When it came to getting a venflon in my arm for the contrast to be injected, it took 2 attempts and a smug doctor to get it in, and much bruising ensued. But the scan went ahead, 15 minutes of lying flat on my back with my arms above my head been moved in and out of the doughnut shaped scanner. I slight problem with profusely bleeding all over the changing room happened but I got it cleaned up and went home.
Around 10pm that night I started to become really itchy all over my chest, neck and lower half of my face which went on until I fell asleep a couple of hours later.
The following morning it was evident that something was wrong, I looked like a frigging beetroot and the itching - aaarrgggghhhhh. Anyway I went to work, trying not to look at people so hopefully they wouldn't notice the beetroot. Then off to dialysis. They were quite concerned and got the Nurse Practioner to come and see me. She said she thought it was a reaction to the contrast I'd had injected.
I was feeling pretty sorry for myself at this point, when I was told I was moving up to yellow needles which were bigger, that didn't help my fastly plummeting mood AT ALL.
Needless (ha ha) to say the first needle went in ok, my arterial button hole seems to work no problem. The second one however didn't, and this was trying it in the button hole they'd started creating on Saturday by putting the plastic biohole in it which had been uncomfortably sitting in my arm for 3 days. I was told this never failed; always worked but mine didn't. What it did do was cause a whole load more bruising and swelling. I started crying because the pain was excruciating. Sometimes I get so down with it all that stopping dialysis seems the only solution. I realise that stopping means dying slowly but the pain from the needles, the numerous attemps at needling at EVERY session is so soul-destroying and frustrating. Eventually as a last resort they went in the site lower down my arm under the arterial site which is only about 1 1/2 cm from the successful site which is too close, but it works so use it.
Once I'd calmed down and dialysis was well under way I then had to get hold of Hari to get him to get me some Piriton tablets before he went off to yoga for the itchy redness and now a rash on both arms. I got home and had the antihystermines and then chilled.
Wednesday I went to work as per still red & puffy but started to feel poorly pretty quickly so I rang the dialysis nurses and after hearing my symptoms Diane insisted I went to A&E. I protested but still she insisted. So once Hari was home from work off we went. It was packed :( First we saw a triage nurse who assessed me, then I had blood taken and then I saw a registrar who after checking with a renal doctor gave me 8 x 30mg steroid tablets and 6 more for tomorrow and instructions to rest, then we went home. An hour later I felt exceptionally sleepy but less red & less itchy.
This morning I woke up feeling great, not red, not itching. Great. An hour later the itching, & especially the redness was back, I had a bath which probably didn't help cos the heat only exacerbates it all. Diane, my favourite dialysis nurse then rang me to see how I was and to say they had a bed if I wanted to go in early.
I got there about 12.30 and they'd done my machine & set the table up so I had to do nothing but my obs and wash my arm, which I duly did. A needle went in a treat with not much pain. B needle however proved as much of a twat as always and wouldn't go in so a 2nd site was chosen, right up by the crook of my elbow so I was given strict instructions to not move! Half an hour into dialysis as I was chilling & getting nicely comfy sudden pain started above the V needle and the level readings on the machine shot up. Melissa came running (literally) as she'd seen the panic on my face and confirmed it had blown. FFS...
Everything was stopped. Diane tried getting a needle into the hole used 3 times so far below the A (meaning if it was successful then the A & V connections would have to be changed) but it didn't work. Needling a new place was ruled out as I was bruised and sore and plasters were now covering most of my arm! Melissa went and got a machine from the other ward to do one needle dialysis, which I hadn't experienced so far. It needed lining & priming so I just lay there while Melissa sorted the machine, Diane kept a finger firmly on my bleeding arm and Gill kept us amused with stories of being a student nurse.
I was put on the machine and everything started swimmingly. I got half an hour before I started to cough and feel a bit rough. Gill came and did my blood pressure which was fine so off she went again. No sooner had she disappeared I started having chest pains and finding it difficult to breathe, so I reluctantly pressed my buzzer and Diane appeared. Within a minute I was laid flatter, the machine was stopped and I was on oxygen. It was quite scary. She did my blood pressure again and it had plummeted. I was taken off dialysis and my needle was removed. I felt really poorly, my breathing was properly laboured and I felt hot but was shivering. Diane said she thought I'd had another reaction to the one needle dialysis as it takes your blood out, cleans it and put its back and repeats the process over and over where as 2 needle dialysis is a constant cycle of removing & cleaning all happening at once.
It took a good half an hour to feel right but then I felt incredibly tired, finding it hard to hold my eyelids up. Diane wouldn't let me leave the ward til she was happy I was fit to drive, and she went and made me a cuppa, bless her. She also instructed me to stay off work tomorrow again, as I need rest. I hate missing work. After she was happy with my BP and that I was safe to drive home I was sent packing.
What a bloody week. 2 reactions to 2 different processess which are meant to help me! The needles are more than enough of a bloody challenge I could well do without my daft body reacting to helpful things. I better bloody get activated on that transplant list after all this.
Sitting here typing this, I have no itching, no redness and no shortness of breathe but I do have a tiny cough still but thats probably the oxygen. I am slightly worried that by 3.30pm tomorrow (the time I took the first steroid dose yesterday) things might go tits up again but I have again been given strict instructions that if they do indeed go tits up I am to head straight back to A&E. Fingers crossed everything is ok tomorrow.
What a week. Thats quite a bit of scary shit when its happening to you. I hope it never happens to any of you. Stay safe blog readers, limit you salt intake and look after your KIDNEYS!!
To end of a good note though, the results of the bloods I had taken at A&E yesterday were posted on Patient RenalView and my eGFR has gone up from 9% to 14% so I guess dialysis is working..... as horrible as it is.
Sunday, 25 October 2015
Strictly Come Dialysis
It's been almost 2 months since I last posted an update, so here it is :)
Dialysis was progressing well needle wise. I had a few weeks of no problems what-so-ever. Then it started getting harder to get the venous needle in (thats the top needle). I've not had any more blows and severe bruising but I have got some bruising. One of the problems is that the needle site that was working is verrrrry close to a nerve and pushing the needle in sometimes hits the nerve and the pain is..... indescribable, it proper fucking hurts :( So the nurses have been trying new sites, a little lower down my arm in the 'juicy' bit as Diane called it when she got the arterial needle in no problem one day. Because new sites have been tried I have new bruises. WHY I ever worried about my fistula ruining my arm I will never know.... look at the state of it and this seems to be the norm!!
Anyway, I have been trying to 'man-up' a bit with regard to needles and having them stuck in me on a 3 times a week basis. I no longer have a lovely nurse hold my hand. First large hurdle jumped.
Next was to look at my arm while the needles were in, which I found tricky as the puckering of skin with the needle going through it makes me squeam!
I decided to take a photo of my arm (without looking!) and I have been glancing at it regularly til I became de-sensitised. Now I can look at my arm with the needles in with no problems. Second MASSIVE hurdle jumped.
Its just as well I jumped that one as one of the failed needle sites started bleeding half way through my session the other day. When I looked down there was blood pooling between the 2 needles on my skin and the nurse gave me gauze to 'soak it all up' while she donned plastic apron & gloves to sort it out! Luckily I'm not bothered by the site of blood!
I have begun my training good and proper. I watch the nurses all the time, watching what they do and how they go about things.
Now when I get to the unit I first wash my hands, then turn the machine on and once it is ready check when it was last cleaned then connect the BiBag and Concentrate then put it in to Test mode.
While its running it's test I do my obs - weight, 2 readings of blood pressure - sitting & standing, temperature & pulse & record all these in my file. Then I line the machine myself which I really enjoy doing. Everything has to be date checked, everything is sterile and must be kept so so there is lots of hand washing & using alco-gel. It took me a few attempts to get the lining right but the machine shows you a diagram so you can see where they go and it soon alarms if something is wrong. I have to put all the info into the machine that it needs to give me the correct treatment, doses of stuff and such, size of kidney (the artificial kidney which attachs to the machine).
I've spent the last week watching the next stage which is setting up the table for going on the machine. Cleaning the table with a sterile wipe, opening the dressing pack without touching anything with hands, opening syringes & putting needles on them as caps, priming the dialysis needes. Its all very organised and there is a definate routine to it. Next week I'll start doing that myself.
When I started dialysis I didn't really pay much attention to Saturdays being one of my days. But then I realised..... dun dun DUUUUNNNN - Strictly Come Dancing, my most favourite TV programme is on on a Saturday night! And to make it worse, I am usually just coming off the machine when its on which is an involved process which means I can't watch the TV and then I drive home. By the time I get home, its finished. Two weeks ago we spent an entire Sunday shopping for a Freeview box which records so I don't have to miss it. I do miss watching it 'live' though, but hey ho, you can't have everything.
Dialysis was progressing well needle wise. I had a few weeks of no problems what-so-ever. Then it started getting harder to get the venous needle in (thats the top needle). I've not had any more blows and severe bruising but I have got some bruising. One of the problems is that the needle site that was working is verrrrry close to a nerve and pushing the needle in sometimes hits the nerve and the pain is..... indescribable, it proper fucking hurts :( So the nurses have been trying new sites, a little lower down my arm in the 'juicy' bit as Diane called it when she got the arterial needle in no problem one day. Because new sites have been tried I have new bruises. WHY I ever worried about my fistula ruining my arm I will never know.... look at the state of it and this seems to be the norm!!
Anyway, I have been trying to 'man-up' a bit with regard to needles and having them stuck in me on a 3 times a week basis. I no longer have a lovely nurse hold my hand. First large hurdle jumped.
Next was to look at my arm while the needles were in, which I found tricky as the puckering of skin with the needle going through it makes me squeam!
I decided to take a photo of my arm (without looking!) and I have been glancing at it regularly til I became de-sensitised. Now I can look at my arm with the needles in with no problems. Second MASSIVE hurdle jumped.
Its just as well I jumped that one as one of the failed needle sites started bleeding half way through my session the other day. When I looked down there was blood pooling between the 2 needles on my skin and the nurse gave me gauze to 'soak it all up' while she donned plastic apron & gloves to sort it out! Luckily I'm not bothered by the site of blood!
I have begun my training good and proper. I watch the nurses all the time, watching what they do and how they go about things.
Now when I get to the unit I first wash my hands, then turn the machine on and once it is ready check when it was last cleaned then connect the BiBag and Concentrate then put it in to Test mode.
While its running it's test I do my obs - weight, 2 readings of blood pressure - sitting & standing, temperature & pulse & record all these in my file. Then I line the machine myself which I really enjoy doing. Everything has to be date checked, everything is sterile and must be kept so so there is lots of hand washing & using alco-gel. It took me a few attempts to get the lining right but the machine shows you a diagram so you can see where they go and it soon alarms if something is wrong. I have to put all the info into the machine that it needs to give me the correct treatment, doses of stuff and such, size of kidney (the artificial kidney which attachs to the machine).
I've spent the last week watching the next stage which is setting up the table for going on the machine. Cleaning the table with a sterile wipe, opening the dressing pack without touching anything with hands, opening syringes & putting needles on them as caps, priming the dialysis needes. Its all very organised and there is a definate routine to it. Next week I'll start doing that myself.
When I started dialysis I didn't really pay much attention to Saturdays being one of my days. But then I realised..... dun dun DUUUUNNNN - Strictly Come Dancing, my most favourite TV programme is on on a Saturday night! And to make it worse, I am usually just coming off the machine when its on which is an involved process which means I can't watch the TV and then I drive home. By the time I get home, its finished. Two weeks ago we spent an entire Sunday shopping for a Freeview box which records so I don't have to miss it. I do miss watching it 'live' though, but hey ho, you can't have everything.
Watching Strictly It Takes Two at the unit one evening one week
The dialysis machine
The view from the window when I'm in the end bed, although I seem to alternate between 3 beds, I don't have my own as some patients have.
Saturday, 5 September 2015
A bump in the road
Getting out of the house on a dialysis & work day is a logistical nightmare....
I need to be up over 2 hours before I go to work so my body can gurgle, bang, spit & realign itself for the day ahead, so I'm up at 6-6.30 each morning. On a dialysis day I have to make sure I have
a) a change of clothes for work (these need to go into work with me so go in my walker thing)
b) a change of clothes for the dialysis unit, cos I don't want to sit there for 4 hours in my work trousers/shirt (these must also come into work with me so also go in my walker thing)
c) a change of clothes in case anything goes awry whilst on the dialysis machine as I can't get to a loo/move at all sometimes (these don't need to come into work with me but do need to be in the car and then I have to remember to swap bags over when I get to the dialysis unit)
d) remember to charge my phone & i-pad so I have something to do (other than reading) while on the machine
e) remember the emla cream/spreader/cling film to wrap my arm in once the cream is applied - I look like an oven ready chicken
f) remember to take my card to get into the underground car park at the unit & have it somewhere handy once I pull up at the barrier.
Honestly its a nightmare, but it does appeal to my organised side!
So.... Thursday of this week arrived. I went to work in the morning, got lots done & enjoyed being there. At 1.30 I snuck off to the loo to baste my arm in emla cream & wrapped it in clingfilm (there is now a roll of it living in my desk drawer), I got a few odd looks off some of the prosthetists!!
At 2, I quickly got changed in the loo (again) and left to drive to Altrincham, eating a butty as I went.
At the unit Lorraine & Gill were the nurses today and I waited while they helped another patient with her needles. After about half an hour it was my turn, obs were done (BP was a bit low) and needling procedure began. My arm was cleaned of all the emla cream and after a bit of feeling around for the right spot, an injection of lignocaine was given - Lorraine was on hand holding duties again. That first needle didn't work - here we go again.....
The second needle worked - huzzah! The third needle was a bit tricky and it was in at an angle and took a bit of wiggling. The wiggling is the stuff that sends my squeam-o-meter racing and it was now as I could feel the needle wiggling about under my skin - eeeurrrghhhhh *shudder*
But, they were in so the machine was started up and away we went. During the next 30 minutes the machine alarm went off 3 times, there was lots of needle wiggling, lots of pulling off of tape & repositioning needles and then the cry of "Oh it's blown!" My fucking fistula, the fistula that everyone says is marvellous and is going to be so good when its matured, had thrown an utter wobbler & blown. Oh great.... more bruising.
During the next ten minutes of them faffing trying to get the blood in the machine back into me through the only working needle, I had a tight tournequet on my arm & a needle in the blown fistula which was hurting like almightly buggery. Have you seen Airplane? Where the flight attendant is singing/playing guitar and she knocks the drip out of the sick girls arm? That was me... doing a fish impression with my lips sucking in trying to pretend it was hurting!!! It was finally loosened and I breathed out, almost blowing the woman in the bed opposite across the ward.
So after all that I was sent home with an even more bruised arm which was now swollen too and told to go to CAPD in the morning for a blood test at 8am to see how urgent dialysis was.
So.... Friday morning I was a CAPD at 7.45, before the department opened as they were still having handover. I waited, and waited... was shown to a bed, and waited, and waited, and waited (there's not another patient in the department while I'm sat twiddling my thumbs). At 8.45am they finally took some blood. I was 45 minutes late getting to work - aararrggghhhhhhh!!
Diane from the Altrincham unit rang a couple of hours later to say that my results were good. My function was at 11% = eh? how did that happen.....! and my potassium level was ok so she said she was happy for me to have a break and go for dialysis next Wednesday. Woohooo - 5 whole days off.... **happy dance**
I need to be up over 2 hours before I go to work so my body can gurgle, bang, spit & realign itself for the day ahead, so I'm up at 6-6.30 each morning. On a dialysis day I have to make sure I have
a) a change of clothes for work (these need to go into work with me so go in my walker thing)
b) a change of clothes for the dialysis unit, cos I don't want to sit there for 4 hours in my work trousers/shirt (these must also come into work with me so also go in my walker thing)
c) a change of clothes in case anything goes awry whilst on the dialysis machine as I can't get to a loo/move at all sometimes (these don't need to come into work with me but do need to be in the car and then I have to remember to swap bags over when I get to the dialysis unit)
d) remember to charge my phone & i-pad so I have something to do (other than reading) while on the machine
e) remember the emla cream/spreader/cling film to wrap my arm in once the cream is applied - I look like an oven ready chicken
f) remember to take my card to get into the underground car park at the unit & have it somewhere handy once I pull up at the barrier.
Honestly its a nightmare, but it does appeal to my organised side!
So.... Thursday of this week arrived. I went to work in the morning, got lots done & enjoyed being there. At 1.30 I snuck off to the loo to baste my arm in emla cream & wrapped it in clingfilm (there is now a roll of it living in my desk drawer), I got a few odd looks off some of the prosthetists!!
At 2, I quickly got changed in the loo (again) and left to drive to Altrincham, eating a butty as I went.
At the unit Lorraine & Gill were the nurses today and I waited while they helped another patient with her needles. After about half an hour it was my turn, obs were done (BP was a bit low) and needling procedure began. My arm was cleaned of all the emla cream and after a bit of feeling around for the right spot, an injection of lignocaine was given - Lorraine was on hand holding duties again. That first needle didn't work - here we go again.....
The second needle worked - huzzah! The third needle was a bit tricky and it was in at an angle and took a bit of wiggling. The wiggling is the stuff that sends my squeam-o-meter racing and it was now as I could feel the needle wiggling about under my skin - eeeurrrghhhhh *shudder*
But, they were in so the machine was started up and away we went. During the next 30 minutes the machine alarm went off 3 times, there was lots of needle wiggling, lots of pulling off of tape & repositioning needles and then the cry of "Oh it's blown!" My fucking fistula, the fistula that everyone says is marvellous and is going to be so good when its matured, had thrown an utter wobbler & blown. Oh great.... more bruising.
During the next ten minutes of them faffing trying to get the blood in the machine back into me through the only working needle, I had a tight tournequet on my arm & a needle in the blown fistula which was hurting like almightly buggery. Have you seen Airplane? Where the flight attendant is singing/playing guitar and she knocks the drip out of the sick girls arm? That was me... doing a fish impression with my lips sucking in trying to pretend it was hurting!!! It was finally loosened and I breathed out, almost blowing the woman in the bed opposite across the ward.
So after all that I was sent home with an even more bruised arm which was now swollen too and told to go to CAPD in the morning for a blood test at 8am to see how urgent dialysis was.
So.... Friday morning I was a CAPD at 7.45, before the department opened as they were still having handover. I waited, and waited... was shown to a bed, and waited, and waited, and waited (there's not another patient in the department while I'm sat twiddling my thumbs). At 8.45am they finally took some blood. I was 45 minutes late getting to work - aararrggghhhhhhh!!
Diane from the Altrincham unit rang a couple of hours later to say that my results were good. My function was at 11% = eh? how did that happen.....! and my potassium level was ok so she said she was happy for me to have a break and go for dialysis next Wednesday. Woohooo - 5 whole days off.... **happy dance**
Monday, 31 August 2015
One hell of a week
Monday of the last week, I felt pretty rough, very, very lethargic, a bit dizzy, sick & I had a banging headache. I didn't go into work as I really couldn't motivate myself to even make a cuppa, let alone get dressed. As soon as Hari texted to let me know he'd phoned work, I fell straight asleep for the next 5 hours. We did have to go to Wythenshawe hospital in the afternoon as I had my first appointment at the Anticoagulant Clinic and was put on Warfarin - great stuff, just what I need at the moment!!
Tuesday I went off MRI for dialysis (see previous entry in blog) and it was a success.
Wednesday I phoned work to update my boss & ask if I could take this week off as I'd already missed 2 days, had dialysis tomorrow & hospital appointments Friday.
Thursday - Hari & I went off to Altrincham. The journey was crap, we kept getting lost. When we found it, we missed the turning so had to turn round & I managed to find a side street choked with traffic & roadworks. I was getting more & more anxious & more and more stressed. We managed to turn round, pulled into the carpark & up to the barrier. We obviously didn't have a pass as I'd never been here before so we pressed the call button for a good 5 minutes before someone answered it. We parked ok & went up to the ward on the second floor. I was shown to a bed, weighed and left to sit while a nurse, called Gill, set my machine up & went through the paperwork I bought with me from MRI.
I was feeling really emotional and tearful. I hadn't wanted to be like this, I'd wanted it to be a positive beginning of my training journey but I felt shattered & really just wanted to sleep. They took my obs & then got ready to do the needles. It was decided that an injection of lignocaine would be a good choice, but that needle hurt, only a bit but it did and as I was hovering already on the edge of tearfulness, the tears just came. I felt ridiculous and really, really fed up and this was even before the two dialysis needles went in.
The needles did go in, with a good deal of pain and the whole 3 hours of dialysis was uncomfortable with one of the needles.
I tried to relax once I was on the machine but it just wasn't happening. I had a cuppa tea & some biccies when the trolley came round and I later a sandwich & another cuppa. Half way through the treatment I got an excruitiating pain in my abdomen & all down my left leg. It was incredibly painful & really uncomfortable. I couldnt change position because I wasn't to move my arm, I kept trying to shift to ease it but it persisted and started to cause spasms in my leg. I could only get comfortable with my left leg bent at the knee and slung sideways, which hurt my lower back but the pain eased. The nurses didnt seem to know what it was or even offer a suggestions, they just gave me a couple of paracetamol. Hari wasn't allowed in the room AT ALL which I thought was slightly over the top, so he was sat out in the corridor for 4 hours and I was sat inside the room for 4 hours, and I could really have done with my mind taking off everything by Hari.
At the end of the dialysis I couldnt wait to get out of there and didn't want to go back. Hari drove me home, it was a pretty silent journey and the traffic was horrendous.
He went of to his Buddhist centre after making some soup, it was all very silent. I really needed a cuddle and to cry on his shoulder but thats not his thing. He went out and left me to cry alone.
The next day I woke up alone as Hari was at work. It was probably a good thing as I was still incredibly down, there wasn't an ounce of positivity anywhere to be found. I rang the pre-dialysis nurses as soon as I got up & had a very tearful conversation with Krisha in which I decided to ask to go back to MRI. I knew in myself that I really wasn't up to learning to do my own dialysis yet. Hell, I can barely look at my own arm when it has needles in it at the moment. I'm not too keen on watching the blood go round the machine cos I know thats my blood. I feel sick when I think about needles. I needed the nurses to do it for now, I needed to feel safe in the safety of their expertise. I needed to stop trying to run before I could walk. I always manage to cope with everything, its what I do. I've been coping with things since I was born, there has always been a new health problem, a new disaster. 20+ operations, endless urine infections, endless hospital appointments, so I should be able to manage dialysis like a piece of piss. But I had to accept that I couldn't, not yet. I needed time to settle in to the whole having dialysis 3 times a week, get in to a routine of it being a large part of my life now before I tried to teach myself. I knew that now.
Krisha was great, very understanding & non-patronising. She rang me back to say she'd rung the training centre & Gill was going to re refer me back to MRI & I was to continue going to Altrincham until then. I was happy with that. That calmed my nerves a little. Krisha stressed that I could at a later date still train myself but maybe give it a few months to get into the swing of things.
That calmed me down and made me feel happier about the journey ahead.
That evening I had a long chat with a lady on facebook who lived in Chorlton called Cassie. She'd been through the whole journey too and her kidney failure was for the same reason as mine, Reflux. I'd not met anyone else who had the same reason before.
Cassie had been through the whole journey, kidney failure, peritoneal dialysis, haemo dialysis, home training, & transplant and was now healthy & working & in a good place. She was a great help, much more than I thought she might be - you can read her blog here - The Girl on Dialysis
Friday, I had a bit of energy. It was a short burst. I managed to get my dressings off... my arm is still very badly bruised
I had 2 clinic appointments and a hospital appointment today and by the end of the day I was totally knackered but relishing almost 3 days of dialysis !
Tuesday I went off MRI for dialysis (see previous entry in blog) and it was a success.
Wednesday I phoned work to update my boss & ask if I could take this week off as I'd already missed 2 days, had dialysis tomorrow & hospital appointments Friday.
Thursday - Hari & I went off to Altrincham. The journey was crap, we kept getting lost. When we found it, we missed the turning so had to turn round & I managed to find a side street choked with traffic & roadworks. I was getting more & more anxious & more and more stressed. We managed to turn round, pulled into the carpark & up to the barrier. We obviously didn't have a pass as I'd never been here before so we pressed the call button for a good 5 minutes before someone answered it. We parked ok & went up to the ward on the second floor. I was shown to a bed, weighed and left to sit while a nurse, called Gill, set my machine up & went through the paperwork I bought with me from MRI.
I was feeling really emotional and tearful. I hadn't wanted to be like this, I'd wanted it to be a positive beginning of my training journey but I felt shattered & really just wanted to sleep. They took my obs & then got ready to do the needles. It was decided that an injection of lignocaine would be a good choice, but that needle hurt, only a bit but it did and as I was hovering already on the edge of tearfulness, the tears just came. I felt ridiculous and really, really fed up and this was even before the two dialysis needles went in.
The needles did go in, with a good deal of pain and the whole 3 hours of dialysis was uncomfortable with one of the needles.
I tried to relax once I was on the machine but it just wasn't happening. I had a cuppa tea & some biccies when the trolley came round and I later a sandwich & another cuppa. Half way through the treatment I got an excruitiating pain in my abdomen & all down my left leg. It was incredibly painful & really uncomfortable. I couldnt change position because I wasn't to move my arm, I kept trying to shift to ease it but it persisted and started to cause spasms in my leg. I could only get comfortable with my left leg bent at the knee and slung sideways, which hurt my lower back but the pain eased. The nurses didnt seem to know what it was or even offer a suggestions, they just gave me a couple of paracetamol. Hari wasn't allowed in the room AT ALL which I thought was slightly over the top, so he was sat out in the corridor for 4 hours and I was sat inside the room for 4 hours, and I could really have done with my mind taking off everything by Hari.
At the end of the dialysis I couldnt wait to get out of there and didn't want to go back. Hari drove me home, it was a pretty silent journey and the traffic was horrendous.
He went of to his Buddhist centre after making some soup, it was all very silent. I really needed a cuddle and to cry on his shoulder but thats not his thing. He went out and left me to cry alone.
The next day I woke up alone as Hari was at work. It was probably a good thing as I was still incredibly down, there wasn't an ounce of positivity anywhere to be found. I rang the pre-dialysis nurses as soon as I got up & had a very tearful conversation with Krisha in which I decided to ask to go back to MRI. I knew in myself that I really wasn't up to learning to do my own dialysis yet. Hell, I can barely look at my own arm when it has needles in it at the moment. I'm not too keen on watching the blood go round the machine cos I know thats my blood. I feel sick when I think about needles. I needed the nurses to do it for now, I needed to feel safe in the safety of their expertise. I needed to stop trying to run before I could walk. I always manage to cope with everything, its what I do. I've been coping with things since I was born, there has always been a new health problem, a new disaster. 20+ operations, endless urine infections, endless hospital appointments, so I should be able to manage dialysis like a piece of piss. But I had to accept that I couldn't, not yet. I needed time to settle in to the whole having dialysis 3 times a week, get in to a routine of it being a large part of my life now before I tried to teach myself. I knew that now.
Krisha was great, very understanding & non-patronising. She rang me back to say she'd rung the training centre & Gill was going to re refer me back to MRI & I was to continue going to Altrincham until then. I was happy with that. That calmed my nerves a little. Krisha stressed that I could at a later date still train myself but maybe give it a few months to get into the swing of things.
That calmed me down and made me feel happier about the journey ahead.
That evening I had a long chat with a lady on facebook who lived in Chorlton called Cassie. She'd been through the whole journey too and her kidney failure was for the same reason as mine, Reflux. I'd not met anyone else who had the same reason before.
Cassie had been through the whole journey, kidney failure, peritoneal dialysis, haemo dialysis, home training, & transplant and was now healthy & working & in a good place. She was a great help, much more than I thought she might be - you can read her blog here - The Girl on Dialysis
Friday, I had a bit of energy. It was a short burst. I managed to get my dressings off... my arm is still very badly bruised
I had 2 clinic appointments and a hospital appointment today and by the end of the day I was totally knackered but relishing almost 3 days of dialysis !
Wednesday, 26 August 2015
At last - it worked!!
By the time Tuesday came around, I was dreading going back to MRI, but I pulled up outside at 7.30am & made my slow way to the department, all the time thinking of turning round & going home.
There weren't too many people waiting, maybe 4 of them before me, I recognised them all from the other days. A lot of the nurses who came in & out of the waiting room I recognised too. I was weighed (76kg - a bit down from last time) and taken through. I was put in the bed by the window in Bay 1 - the same bed I was in the first morning and hoped it was an omen as it had worked that first day.
I was told an expert needler was coming to do my needles - they said that last Wednesday and look at the state of my arm!! I can't remember the ladies name but she really took her time, feeling & listening with the doppler scanner thing and when she was confident she'd found the right spot, the first needle went in and it worked! Another nurse appeared and she held the doppler on my vein as the other nurse inserted the second needle which also worked - BONGO! Relief!!
I let go of Danielle's hand (Danielle was the nurse I'd had the most contact with at this unit and was very lovely) and relaxed into my 3 hours session. Danielle said this time they were going to take some fluid off today. I'd read about this on the Renal Support Group so vaguely knew what it was about. They only take a bit off at first and increase it as you go along.
I was sleepy but can never sleep in hospital as there's too much going on. The alarm on my machine went off at one point when one of my levels rose too high but the expert-needler-nurse just pulled one of the needles out a teeny weeny bit and it went back to normal. Another nurse appeared to give me some drug called Aranesp, which is used to treat anaemia & increase red blood cells.
A senior nurse came to have a chat with me, I remember she was called Rachel but I can't remember her job title. She just again reassured me there was no rush to home train and if it didnt work out it wasnt the end of the world.
3 hours after I started, I was taken off the machine. As I'd had to start taking Warfarin the day before this session (because of the Atrial Fibrilation) it took a little while and a change of dressing to stop one of the needle sites bleeding. The nurses put the dressings on so tightly, obviously to apply pressure to stop the bleeding, but the dressings hurt more than the needles!!
I was weighed on the way out today - 75.6kg, that's .4kg lost in fluid. As a diet though I wouldn't recommend it!
I managed to walk extra specially slowly back to the car, trying not to let the walker roll over anything bumpy as the vibrations went up my arm and really hurt, which was ok in the smooth hospital corridors but as soon as I went over the pavement it was a bit tricky.
Later in the day after a doze, an awful lot of wind, and eating lots (dialysis seems to give me an appetite) I got very emotional and teary. Not sure why.
There weren't too many people waiting, maybe 4 of them before me, I recognised them all from the other days. A lot of the nurses who came in & out of the waiting room I recognised too. I was weighed (76kg - a bit down from last time) and taken through. I was put in the bed by the window in Bay 1 - the same bed I was in the first morning and hoped it was an omen as it had worked that first day.
I was told an expert needler was coming to do my needles - they said that last Wednesday and look at the state of my arm!! I can't remember the ladies name but she really took her time, feeling & listening with the doppler scanner thing and when she was confident she'd found the right spot, the first needle went in and it worked! Another nurse appeared and she held the doppler on my vein as the other nurse inserted the second needle which also worked - BONGO! Relief!!
I let go of Danielle's hand (Danielle was the nurse I'd had the most contact with at this unit and was very lovely) and relaxed into my 3 hours session. Danielle said this time they were going to take some fluid off today. I'd read about this on the Renal Support Group so vaguely knew what it was about. They only take a bit off at first and increase it as you go along.
I was sleepy but can never sleep in hospital as there's too much going on. The alarm on my machine went off at one point when one of my levels rose too high but the expert-needler-nurse just pulled one of the needles out a teeny weeny bit and it went back to normal. Another nurse appeared to give me some drug called Aranesp, which is used to treat anaemia & increase red blood cells.
A senior nurse came to have a chat with me, I remember she was called Rachel but I can't remember her job title. She just again reassured me there was no rush to home train and if it didnt work out it wasnt the end of the world.
3 hours after I started, I was taken off the machine. As I'd had to start taking Warfarin the day before this session (because of the Atrial Fibrilation) it took a little while and a change of dressing to stop one of the needle sites bleeding. The nurses put the dressings on so tightly, obviously to apply pressure to stop the bleeding, but the dressings hurt more than the needles!!
I was weighed on the way out today - 75.6kg, that's .4kg lost in fluid. As a diet though I wouldn't recommend it!
I managed to walk extra specially slowly back to the car, trying not to let the walker roll over anything bumpy as the vibrations went up my arm and really hurt, which was ok in the smooth hospital corridors but as soon as I went over the pavement it was a bit tricky.
Later in the day after a doze, an awful lot of wind, and eating lots (dialysis seems to give me an appetite) I got very emotional and teary. Not sure why.
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