GET OFF MY ‘FISTULA’ !!

Hello and welcome to my NEW POST, which I have turned into sharing my SPEECH as a PATIENT SPEAKER at the National Kidney Conference 2014 held 10-12 October, last weekend.

I was invited to come along months ago to present. A Psychological aspect of my Transplant Journey I have not shared publicly. However leading up to the Conference, I have given so much back in this area and my Campaign Continues following this Speech. This is dedicated to my Dad and those Renal Patients on Dialysis Journeys.

THIS IS MY……..PSYCHOLOGICAL NIGHTMARE……BE EDUCATED

HELLO from PURPLE CHICK

Hello everyone, firstly can I say how proud I am to be here today and thank the NKF for inviting me to come along and share my words with you.

FEELING COMFORTABLE & STRONG

FEELING COMFORTABLE & STRONG

I am Lorraine Pooley or becoming known more as Purple Chick in the Renal and Organ Donation Arena. I am 53, mum to 3 special adult children grandson, dog and chicks. I have the RARELY known POLYCYSTIC Kidney Disease, but hope to change that in time. PKD has not dominated my life, but has had a massive impact.

What I really wanted to do today was to talk LIVE from my kidney about ‘Taking Control’ during my journey, if I don’t stick to the script I have written, then there is a very big possibility that I may not get across WHY I am HERE today and NO WAY would I let that happen!

GET OFF MY FISTULA

PHOTO OF A FISTULA ARM PRE OP WITH WRITING ALL OVER IT..SAYING 'do not use' and Fistula Awarness Band. This friend Debbie Anderson Glasier had her Fistula damaged and irrereparable during a Gall Bladder operation ..NOT ACCEPTABLE.

PHOTO OF A FISTULA ARM PRE OP WITH WRITING ALL OVER IT..SAYING ‘do not use’ and Fistula Awarness Band. This friend Debbie Anderson Glasier had her Fistula damaged and irrereparable during a Gall Bladder operation ..NOT ACCEPTABLE.

SIMPLY BUT SHOCKINGLY, I had my Fistula Access for Haemodyalysis almost blown twice in 2011, by two nurses at different times putting a BP cuff on my Fistula Arm, which is forbidden, as the artery WILL burst destroying the Fistula. Both these gross errors occurred during my hospital stay following my right nephrectomy operation, pre my kidney transplant, NO EXCUSES, this SHOULD not have happened.

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From the moment this took place, both in the evening when I was semi conscious, this set off a whole series of actions, emotions and anxiety.

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I asked the Staff for something for my arm, to alert medics about my fistula and I got told they had nothing. So I repeatedly insisted and they made me a make shift sleeve out of gauze and asked to be wrote on it ‘FISTULA ARM DO NOT USE. I kept it on whilst I was sleeping or going for procedures, it kept me awake and I kept feeling it, to make sure it did not slip off.

In full swing

In full swing

Every handover, if it was not mentioned to the staff on the walk round the ward that I had a Fistula, I found myself informing new team for that shift.

What I have to say is that I was vulnerable, scared, weak, recovering from an operation where I almost died, just started my first dialysis sessions, it was like ‘WHAT THE HELL’.

I lost trust straight away in my day to day patient care thereafter.

MY FISTULA comparing with a fellow Transplantee I met on World Kidney Day, who had had his for 25 years

MY FISTULA comparing with a fellow Transplantee I met on World Kidney Day, who had had his for 25 years

TREAT LIKE GOLD

I was was disgusted at what happened and I should not have had to ask for help in protecting my fistula, why did the staff not know about it, why was it not communicated effectively, why did I have to alert medics. I was in for a renal operation? This was my lifeline I had looked after and stuck to my amazing vascular surgeons words…treat your FISTULA like GOLD.

Once back at my designated acute dialysis unit after my session one day was I noticed Fistula Awareness Bands on the dialysis reception, left by the local Lancashire & South Cumbria Kidney Patient Association. Ok what were these… it said ..FISTULA ARM, NO BP TESTING .so I eagerly bought two for a £1 each and felt much happier knowing I was wearing something I thought would alert medics to not use my arm for BP and needling. I actually felt a bit safer and empowered at that time and kept on me all the time!! However, I still found myself even in wearing my band, that I had to use my VOICE too, not just in the Renal arena, but other areas too.

FISTULA AWARENESS BANDS

FISTULA AWARENESS BANDS

I decided to purchase an IPad for dialysis. This was light and easy to use with touch screen and I started a blog about my days there, a record of my progress that I wanted to keep and it became a coping strategy.

A WISH FOR A KIDNEY CAMPAIGN

So from my Operation in 2011…..I began my A Wish for a Kidney Campaign 13/12/13, encompassing more than my goal of being on a PLATFORM, which I shared with the Course Leader on a Patient Leadership Course I attended back in March AND being here now, is the said Platform at NKF, which I knew back in April.

Initially I decided to promote the fistula awareness band in October 2013, as a starter point, to empower patients in their access care.

In addition to my renal community I came into contact with and my Renal Hospital, I was already a member of a number of social media {FACEBOOK groups} and having made many friends! I decided to put up a POST about the Fistula Awareness Band and importance of, but to alert others to my experiences around my access.

1st Anniversary of Transplant. First first fundraising event as part of A Wish for a Kidney Campaign. Valued Family and Friends

1st Anniversary of Transplant. First first fundraising event as part of A Wish for a Kidney Campaign. Valued Family and Friends

EMPOWERING PATIENTS

On one Facebook Group, The Renal Patient Support Group, Shahid Mohammed one of the co founders was enthused by my pro activeness and the positive benefit and empowerment my post was giving to other members. From that, I agreed with him we set up a folder to keep this an ongoing project.

I received over the period of a month, 110 comments on the RPSG, relating to various areas where care of fistula access can be or should be improved, plus almost 100 Likes. Many fellow patients shared their psychological issues, plus private messages, phone calls, over hundred likes and ongoing conversations daily about fistula care, which I personally handled.

From my posting simultaneously on several additional renal forums I was active on too, my campaign went into receiving over 180 comments and in the same period in the same total of a month alone, plus equal LIKES and messages too.

AND this I kept going updating on the group, as I made progress with my actions and responses Iv lost count now, how many I have helped on many closed Renal Groups. Just every day, there is a patient on the groups asking for help and if I see, I inspire, help and guide

A Patient I Helped  outside of Social Media. We fundraised and £2000 we managed to raise on the evening.  http://www.chorley-guardian.co.uk/news/local/health-sufferers-lorraine-and-dani-are-fund-raising-friends-1-6703724

A Patient I Helped outside of Social Media. We fundraised and £2000 we managed to raise on the evening.
http://www.chorley-guardian.co.uk/news/local/health-sufferers-lorraine-and-dani-are-fund-raising-friends-1-6703724

GET OFF MY FISTULA

The clear message I wanted and still want to highlight to fellow patients, who have a fistula or being prepared for one, the importance of protecting your access and wear a FISTULA AWARENESS BAND ~It makes you

1. Feel safe
2. Less vulnerable
3. Less scared
4. In control.
5. Empowered

HOWEVER, I also want to express that it is important to ensure that you get more understanding about your fistula access, empower yourself in your care, but to alert others around you too. This is all to ensure that on any hospital ward, not just renal, that the staff become more aware and by doing this, you feel more strong in doing and preventing your lifeline being damaged.

SEA AIR...phew.....JOB DONE

SEA AIR…phew…..JOB DONE

I DO NOT WANT ANYONE TO GO THROUGH THE PSYCHOLOGICAL
JOURNEY I WENT THROUGH

GALA DINNER with fellow TRANSPLANTEES

GALA DINNER with fellow TRANSPLANTEES

GREAT EVENT, BOOTS OFF...NICE SUNSET....

GREAT EVENT, BOOTS OFF…NICE SUNSET….

LINKS:

http://www.kidney.org.uk

http://booking.kidney.org.uk/Conference%20Leaflet_v1.6%20Printer.pd

http://pkdcharity.org.uk

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