Brits and Londoners

[JW77]

I'll be joining a few friends from another group on Saturday, the 10th

So the details are below if anyone's interested.

Also I'm trying to drum up a bit of interest for the London Kidney Social, if any IHD's fancy a UK meetup this year.

https://www.facebook.com/groups/LondonKidneySocial/

Details for the event on the 10th below.

The event on the 10th is in conjunction with the Outsiders Club, a UK based charity for varied disabilities and conditions, I'm not hosting, but always love a few extra friends around:D



1.30 to 5.30 PM at Finch’s near Moorgate station, Veronica the Manager previously worked at the Paternoster and knows the Outsiders.

Directions from Moorgate and Old Street Station (Old Street is the nearest) and Local bus routes are below, as well as contact details for the Pub. Liverpool Street Station is also nearby, and has links to Overground, National Rail, tube, and bus.

General Manager Veronika Gormley Mostkova FINCH’S 12A Finsbury Square London EC2A 1AN 020 7588331 E:finchs@youngs.co.uk

The Menu and put website: http://www.finchspub.co.uk/eating

Google map of the area.

http://goo.gl/maps/DJn9y

Buses to and from Old Street Station:

http://www.tfl.gov.uk/bus/stop/HUBOLD/old-street-station/

Streetmap, A-Z style map showing Finch's and surrounding area:

http://www.streetmap.co.uk/map.srf?X=532787&Y=182049&A=Y&Z=106

The nearest accessible rail and tube station is Farringdon, about 1 mile from the venue.

Parking.

http://en.parkopedia.co.uk/parking/ec2a_1an/

There is a large NCP car park in Finsbury Square, my research on the web also suggests there is a large number of parking meter spaces near the venue which MAY be free after 1:30 PM on Saturday.

Those with blue badges always check the borough:)
JW:)

[kristina]

Hello again JW77
and thanks for the information about the meeting of Londoners on Saturday the 10th.
Unfortunately I have my dialysis-sessions on Tuesdays, Thursdays and Saturdays, always in the evenings
and since I am still a dialysis-newbie and had dialysis only ten times so far, I am still a bit nervous before every dialysis-session.
But I do hope very much that I can come to the next meeting.

Best wishes from Kristina.

P.S. I am not on facebook.

[JW77]

They are always almost always monthly on Sat, with the exception of a few special events.

However when it warms up I'd like to do a social for my London Kidney Social Group.. which wouldn't HAVE to be on a Saturday:D

You'll be more comfortable with dialysis.. Even after doing it at home for nearly 10 years I sometimes worry about the needles going wrong, the machine breaking down.. Powercuts.. 

J

[kristina]

Thank you for the information, JW77 and I do look forward to the next London Social Kidney Group-meeting
I am very glad for the possibility, that the meeting could take place on another day, perhaps on a Sunday?
Thanks for your kind wishes for my dialysis-sessions. I do hope I'll feel more comfortable with dialysis soon,
because at the moment I still feel very vulnerable and over-protective about everything to do with my life-line-catheter
and I am still a little nervous about each dialysis-session. But I have already started to feel more secure with my dialysis-centre
and they are really excellent, very kind and take great care with each patient, but unfortunately they are an Accident and Emergency dialysis-centre
and I know that I may have to move on to a more "regular" dialysis-centre which is not Accident and Emergency...
... Please let me know when the next London Social Kidney Group-meeting takes place...
Thanks again from Kristina.

[JW77]

Probably when it warms up a bit, I'll probably be travelling out of London for a few weeks soon as well.


I can understand your worries about dialysis. I do every other day at home, always concerned about the machine misbehaving, issues with my needles, the machine having a breakdown, my mum, as main carer stressing out.  So many little things, that and theres always the risk of infection of course. Thankfully I've started using a clinical bodywash every time I shower. 

I just try and and get on with life as best I can in between sessions.

I've been on home heamo for 9 years, with a long and colourful history behind me:)

Best

J

[kristina]

Thank you JW77 for your thoughts.
It is true that dialysis involves so many "little" and so many "big" things to consider...
Like yourself, I also take great care to avoid infection and hopefully my great care "pays off"...
... You mention a "clinical bodywash" when you take a shower ? What precisely is that ?
Could you please elaborate?
Thanks  again from Kristina.

[JW77]

Its what they gave me last time I was in and had an infection. Not get it on prescription, and occasionally buy it off amazon when they're a bit slack.

Its a skin friendly, liquid antibacterial soap. Brand name is Octenisan,

 http://www.amazon.co.uk/SCHULKE-OCTENISAN-ANTIMICROBIAL-WASH-LOTION/dp/B0036IKUTE

Last time I was admitted for being treated with an infection that 'might' have started at my fistula, or got in via, they give it to you for use in the showers in the hosp. As my fistula is nearing 30 years since I got it, anything that helps prevent infection is a good idea in my mind.

[kristina]

Thank you JW77 for the further information, it is very helpful.
You are right, it is very important for us to do as much as possible
to avoid any infection and an antibacterial soap might assist us to do just that.
Thanks again from Kristina.

[jeannea]

Kristina, you and JW are talking at cross purposes. He is talking about washing his fistula area. That is important and something he should be doing. You have a catheter that is cared for in-center. You should not be washing your catheter area. Please be careful.

[noahvale]

*

[kristina]

Thanks you very much Jeannea and noahvale. I  do understand your concern,Jeannea
and I can assure you, that I would not let any water come near my catheter, because it is my life-line.
My catheter is being looked after in the dialysis-centre, where at every dialysis-session the nurse disinfects it very carefully,
before I am being put on the dialysis-machine.
I also use a damp flannel every morning carefully around the area of my catheter,
before I take a shower with a movable shower-head for the rest of my body.
I have to be ever so careful to make sure that no water gets near my life-line.
Thanks again from Kristina.

[jeannea]

Noahvale, I know some do go home with catheters and do home hemo. They are taught how to change their own bandage I assume. But JW mentioned his fistula and I was worried that there was some confusion.

[JW77]

Thats quite OK, its always good to clarify:)

Protocols differ from country to country (what an ugly word protocol is!).

Care for ANY dialysis access is vital, whether done at home or in the unit. Staff make mistakes too, so its important us patients self educate as much as possible.

Blue sky, white clouds and windy here in London.

Must get on..  Have just signed up for a new term of Chi Kung on Sat, and stuff to do:)

[kristina]

Hello JW77,
I agree with you that "protocol" is generally speaking not a very nice word,
but in our particular case it might just be a special exception, because it concerns the "protocol"
of how we and the nurses care for our very important life-lines...
... I agree with you again that it is very vital for us (I would even go as far as stating,
 that it is vital for our dialysis-survival) to self-educate ourselves as much as possible and by doing so,
we eventually may assist the nurses as much as possible to make their "job" a little easier
and it certainly assists us to make our life a little easier as well...
... I have now started with my dialysis-diary and I also write every day my current weight into my diary,
in order to assist the nurses to estimate my dry-weight a little easier...
Apparently I must have lost lots of weight, whilst I was fighting so hard to keep myself pre-dialysis altogether for over 43 years,
because during all that time the slow build-up of my apparent water-retention only "masked" - for a very long time- the fact,
that I was actually getting really skinny underneath all that huge amount of water-retention...
This fact alone makes it now a little bit more difficult to estimate my real dry weight at the moment
and I try to assist the nurses by wearing the same sort of clothes  (which fortunately I have in three different colours)
during every dialysis-session, so that the estimation of my true weight is not being compromised by any different weight of any different clothes...
... Wearing the same sort of clothes (which luckily I have in three different colours)
assists the nurses and me to estimate my real weight better before every dialysis-session,
without me getting into any conundrum, whenever I have to change a pair of my clothes,
because the other two pairs are still unworn and therefore still "fresh" from the laundry and they all weigh exactly the same ...
... and all these precautions enable me to change into new dialysis-clothes very easily, without compromising my weight in any way,
whenever I have to record my weight to the nurses before each dialysis-session...
... all that just goes to show, how careful all these sorts of things have to be thought out
to arrive at our real dry-weight, as soon as we start with dialysis...
Thanks again and best wishes from Kristina.

[noahvale]

*

[iolaire]

As my fistula is nearing 30 years since I got it, anything that helps prevent infection is a good idea in my mind.

30 years!  So you have been using the same vein for 30 years?

[kristina]

... and all these precautions enable me to change into new dialysis-clothes very easily, without compromising my weight in any way,
whenever I have to record my weight to the nurses before each dialysis-session...
... all that just goes to show, how careful all these sorts of things have to be thought out
to arrive at our real dry-weight, as soon as we start with dialysis...

How do you allow for a daily "poop"?  I doubt it is the same weight each time.

Hello noahvale,
Being a lady, I honestly don't usually "talk about" these "things",
but fortunately I have had no complaints whatsoever in this "department" ...
... Having read your comment makes me wonder ... (because I am still a dialysis-beginner)...
... whether "this" is presenting the "norm" or whether "this" is not presenting "the norm" ...when on dialysis ?
Thanks again from Kristina.

[JW77]

As my fistula is nearing 30 years since I got it, anything that helps prevent infection is a good idea in my mind.

30 years!  So you have been using the same vein for 30 years?

No, 3 transplants, and complications putting me back on dialysis in between, its nearing 30 years old, but its not been used repeatedly for 30 years. Healthy, strong fistula, = insurance for failing transplants.

Like Kristina, I have a light comfy set of clothes for dialysis, T shirt and loose comfy trousers, not costing too much so its not gonna bother me if a bit of blood gets spilled on it.. (Does happen sometimes)


Educating yourself as a kidney patient, is a bit like being an employer, your the senior management and you have to work with a 'team' of medical staff, so it helps to try and work with them, without forgetting YOUR the employer:)

[Sugarlump]

Going back to the comments about antibacterial bodywash
in my opinion it is far easier to get an infection on your skin and surrounding with a catheter than a fistula.
So using antibacterial bodywash in the area of the catheter can only help...
I caught a MSSA infection when having a catheter replaced from infection on the skin surrounding the catheter..
partly because they should have replaced it in a different side and partly because they forgot to give me antibiotic cover at the time.
This is the worst type of infection, along with MRSA that you can get, especially as dialysis patients with poor immune systems.
Both infections are prevalent on the skin.

[kristina]

Going back to the comments about antibacterial bodywash
in my opinion it is far easier to get an infection on your skin and surrounding with a catheter than a fistula.
So using antibacterial bodywash in the area of the catheter can only help...
I caught a MSSA infection when having a catheter replaced from infection on the skin surrounding the catheter..
partly because they should have replaced it in a different side and partly because they forgot to give me antibiotic cover at the time.
This is the worst type of infection, along with MRSA that you can get, especially as dialysis patients with poor immune systems.
Both infections are prevalent on the skin.

Hello Sugarlump,
Please tell me how you got this MSSA infection (what precisely does it mean and what are the symptoms?) and how was it treated?
How did the nurses forget to give you antibiotic cover ? Was there too much action at the dialysis-center at the time?
Did this occur before or after you had dialysis? Did you also have a tunneled chest-catheter at the time?
Did the infection take place at the exact spot where the tunneled catheter "comes out" of the skin ?
The nurses wrap my tunneled catheter first in disinfectant tissue and then they dry it again, before "putting" me on a Dialysis machine
and after that I always put some clean tissue around the cath plus around "my" connection to the dialysis machine
so that I can have a little snack half way through the dialysis-time ...
... When I am finished with dialysis, the nurse again "soaks" my catheter in several disinfectant medical tissues and after that
they first dry it with clean tissue and then they put medically clean dry tissue around my catheter
to finally put some tape over it and then they tape the catheter to my body.
I hardly ever talk to the nurses through this long procedure, so that I won't take their attention away from "the job"...
Was your catheter treated differently?
Thanks agian from Kristina.

[JW77]

As my fistula is nearing 30 years since I got it, anything that helps prevent infection is a good idea in my mind.

30 years!  So you have been using the same vein for 30 years?

`

Its had a rest,  during the time of  my 3 transplants, the fistula itself nearing 30 years old, I started self needling at the age of 10..

https://www.facebook.com/photo.php?fbid=10152647994555151&l=8a5320b5ce

What MRSA is on NHS website
http://www.nhs.uk/Conditions/MRSA/Pages/Introduction.aspx

[Sugarlump]

Going back to the comments about antibacterial bodywash
in my opinion it is far easier to get an infection on your skin and surrounding with a catheter than a fistula.
So using antibacterial bodywash in the area of the catheter can only help...
I caught a MSSA infection when having a catheter replaced from infection on the skin surrounding the catheter..
partly because they should have replaced it in a different side and partly because they forgot to give me antibiotic cover at the time.
This is the worst type of infection, along with MRSA that you can get, especially as dialysis patients with poor immune systems.
Both infections are prevalent on the skin.

Hello Sugarlump,
Please tell me how you got this MSSA infection (what precisely does it mean and what are the symptoms?) and how was it treated?
How did the nurses forget to give you antibiotic cover ? Was there too much action at the dialysis-center at the time?
Did this occur before or after you had dialysis? Did you also have a tunneled chest-catheter at the time?
Did the infection take place at the exact spot where the tunneled catheter "comes out" of the skin ?
The nurses wrap my tunneled catheter first in disinfectant tissue and then they dry it again, before "putting" me on a Dialysis machine
and after that I always put some clean tissue around the cath plus around "my" connection to the dialysis machine
so that I can have a little snack half way through the dialysis-time ...
... When I am finished with dialysis, the nurse again "soaks" my catheter in several disinfectant medical tissues and after that
they first dry it with clean tissue and then they put medically clean dry tissue around my catheter
to finally put some tape over it and then they tape the catheter to my body.
I hardly ever talk to the nurses through this long procedure, so that I won't take their attention away from "the job"...
Was your catheter treated differently?
Thanks agian from Kristina.

MRSA and MSSA are just versions of staph aureus which is a common but deadly infection, often found on the skin. They are very resistant to antibiotics. If they get into the bloodstream, which mine
did, they can be very very severe/sometimes fatal. They removed my dialysis catheter and found it to be infected, possibly from contact with the skin as it was being inserted. Initially you get flu like symptoms, high temperature and chills, vomiting, weakness...as it spread rapidly through my body it affected my nervous stem, my heart valves and my mobility.
My catheter fell out on holiday, so had to attend local A and E for it to be replaced, which was done on Christmas Eve on a renal ward.
I don't think they paid enough attention to sterile condition or antibiotic cover or even where they replaced the line...( They were understaffed and another patient had a heart attack and died, so it was all very chaotic and i had to wait an hour to be taken off after my dialysis during which time my lines clotted) and within 48 hours I was very ill .Dialysis units vary a lot in competence and ability to deal with emergencies. As a dialysis patient you have to take the advice or action given at the time as it's not an option to have no dialysis access for more than 3 days... part of me wanted to drive back home to a hospital I knew  but in truth, that wasn't practical.
We were on Dartmoor, and Plymouth Hospital was where we had arranged holiday dialysis and the nearest local hospital would have been Cambridge, and bearing in mind it was christmas eve... there was no easy answer. I wish to God we had driven back, but it's easy to be wise after the event.
Take good care of your catheter. Sounds like you have a good unit.

[kristina]

I am so sorry  Sugarlump, for the horrible experience you went through
and it seems that you were at the wrong place (isolated Dartmoor)
and most certainly it was the wrong timing (Christmas Eve) ... I am so sorry for that...
But I am very happy for you and I am amazed that your body made it through !
You are obviously a very strong lady...!
(My fear has been for years to need medical emergency-treatment on bank-holidays
or during the Christmas/NewYear-season or during long weekends...)
... I do hope very much that your body has recovered from these experiences
and you "do" much better now and I thank you a lot for taking the time to explain.
... The nurses and doctors at "my" dialysis-unit are very helpful and they encourage patients
to ask questions and all that creates a friendly atmosphere, despite the fact
that the dialysis-unit works really as a life-support-unit
which constantly deals with very serious medical matters ...
Thanks again for explaining and best wishes from Kristina.