THREE YEARS ON

THE FRIEND THAT WAS LEFT

BEHIND

 

KIDNEY OUT 6/10/11

It has been a day of reflection today 6/10/14 and a day of feeling very proud 3 years on from my 1st Operation and here I AM a RENAL WARRIOR with a year of even more positives.

When I went into hospital pre op on the 5th October, 2011, the transplant work up I had gone through with my sister in 2010 was taking me to the operating table to have BOTH my enlarged POLYCYSTIC Kidneys removed. This to make room for my ‘new’ kidney, which my sister had offered to donate early 2012. This would be after a few months on dialysis, that was the plan??

So this night, the 5th I went through observations, met various doctors, consultant, anaesthetist, nurses, my Surgeon examined me and immediately, this chicken like woman led on the table, with a very swollen tummy, stick thin legs, underweight, organs groaning under the lack of room….was worried!
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ASCITES & ME..Pregnant Look

My Surgeon, my life saver’s face said it and I respected his honesty, but at this late stage, he said ‘ Lorraine I do not feel it would be right for me to remove 2 kidneys’.

Looking at my body, pregnant like, lack of room, he was honest saying that he didn’t know for sure till they got inside, like a car…different engine..that with having some ‘ascites’ {fluid} filling spaces and my underweight body, it was highly unlikely. (I was to find out just how much that fluid changed my life forever.)

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WHAT IFS

Being given this uncertainty the night before, I felt anxious, depressed and having my three adult children around me on the morning of the operation too. This knowledge was breaking my heart, more the fact I was leaving my children, my dog going into what I felt was a more risky operation than I’d been led to believe.

Yes positive as I was years leading up to this moment, you are never prepared for that feeling of WHAT IF I don’t survive this. It’s what they tell you, understandably very much an unknown of what would be found, how my organs would be, all squashed up, still a very BIG risk and my overall complications. BUT my WILL had been done, that’s all I kept thinking and told my three I loved them and more. Plus my faith and my Dad watching over me.
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RENAL FAILURE & BODY CHANGES

BUT I had to go with this, living for years like I was pregnant, carrying extra weight with enlarged kidneys and liver, high BP, anaemia, lack of appetite, organs so fighting against each other, I had to hold my arm up after id eaten. I struggled getting upstairs, weary, lost my boobs, no jeans unless with braces, it was never not going to be anything else but kidneys being removed for me. I had life in me!!

Sadly, but life savingly I only had 1 kidney removed, as once they opened me up, 4 litres of fluid was gushing out, making it very difficult to retrieve even one kidney, however, it was a very good retrieval in my wonderful surgeons hands. They had to close me up still after few hours, took my nasty cyst covered kidney and disposed of, although I said they could use or kick across the theatre.
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LIFE ON THE EDGE

I almost died on the operating table this day 3 years ago, 6/10/11, still had what turned out to be my FRIEND, my left native kidney, which they could not risk my life retrieving, but he became very much a part of my surviving DIALYSIS. He still had some function, so I was still able to pass water and therefore, I did not have a restriction on my fluid. If my kidneys had both been removed, I would have been restricted to about 500 mls daily !! which is a struggle for Dialysis Patients Iv left behind still, but unbelievably you can, you have no choice!
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It became apparent in recovery that things were not just right, I was very poorly, but remember the wonderful feeling of coming round after the operation and saying… I’m Alive!!

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WHAT HAPPENED?

The first week was a week of pain like Iv never known starting my first session on dialysis primarily, not from my operation incision, frustration, as I was drugged up and away with the fairies according to my children for two weeks.
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I cannot remember too much, except my legs were 3 times the size and my whole body was overloaded with fluid. Why?

Well that took my daughter,who is a nurse and lots of surgeons and consultants standing around my bed daily, test after test trying to work out what the hell had happened to me. They knew the ascites had big part to play and the POLYCYSTIC Liver came into focus and fortunately I was in good hands there with an amazing Liver specialist, who worked with the renal guys too on this for two weeks.

Long stay: 5.5 weeks, lots of fluid that was going very slowly, lots of procedures, lots of venting, my fistula access compromised, being bag lady. BUT I still managed to keep upbeat, two weeks post op, my voice returned and our ward was noisy and friendly despite the suffering on there. As PATIENTS we have to laugh at ourselves.

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FACING DEATH ASIDE LIFE

On the day of my Grandsons christening, I was still in hospital and that day is still with me. My Blood Pressure dropped and if it was not for a friend visiting, I could well have died. He saved my life, but what ensued was like a Star Wars scene and that throwing me back, rushing me up to dialysis unit, put upside down, lots of faces and voice, all to save my life and did, this has stayed with me.

When you get asked …do you want us to ring your children..phew..well I said NO, they will be in church now and I cannot spoil their day. Broke my heart, but just fought, listened and I came round. And SURVIVED.
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More to come in a other Blog, but it’s good to reflect, it shows how far you have come.

Be inspired in keeping positive in the darkest of times. Believe in you, put trust in your surgeons, who want to make things better for you. That Is their passion saving lives and what I felt was passion.

My Surgeon was extremely worried about me and come to see me every day for the first week and on his way home and sat with me through tears and worries.

 

PATIENT EMPOWERMENT

How my Surgeon was with me, anyone having an operation should be experiencing and if you are not, NOW that Is a different story. ONE that is topic of conversation in the RENAL and DIALYSIS world. Consistency and breakdown in some patient care. I urge all Patients to EMPOWER, TAKE CONTROL, if not yourself, your family or friends. We have a voice, we have to use it more.

Talking about VOICES, through my personal campaign this year in giving something back, I set myself a GOAL and that was to be on a PLATFORM voicing about something that happened to me during this 1st operation 3 years ago. I have done much about this and this will be my next BLOG. I have not talked about it, as it was my PERSONAL psychological nightmare and kept within, to present at the conference I achieved acceptance at 4 months into my campaign, so BOOTS on……..

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On the 11/10/14 I am a Patient Speaker at the National Kidney Federation UK 2014 Conference, talking about TAKING CONTROL, to be held at the Hilton Hotel, Blackpool. Please find me in this Conference Programme below.

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

 

KEEP ON YOUR PATH

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Purple Chick

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MARCH MADNESS

Hello everyone

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Spring was so welcomed this year, I was so ready mentally for the fresh Spring Mornings, warmer? new growth on the trees I love and the excitement of even more flowers than last month to take yet MORE photographs of. My camera ready to snap and my Boots clicking their heels and Millie, my Dog holding her lead, saying ‘come on, where to today?”

All Wrapped up and Ready to Go

All Wrapped up and Ready to Go

 

BUT, SMACK, BANG, WALLOP, this Superhero needed the Avengers for sure…mmmm SPRING or SPRUNG into ACTION was definitely in this MjARCH ‘HARE’ and Purple Chick turned REBEL Activist Voice, even more to the point of I thought….WHAT….HOW….WHEN words came to mind.
I do NOT always look for challenges, they find me and I just can’t say NO, especially, if RENAL, DIALYSIS, ORGAN DONATION, COMMUNITY, NATURE, WILDLIFE and more involved.

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RENAL REBEL – BOOTS ON for Tackling Man Wanting to Sell a Kidney

Mr Michael Jackson

Mr Michael Jackson

 

Something happened when I was speaking on Chorley FM about Organ Donation back in Late February, this man got himself into the PRESS, for reasons I did not see as a JOKE, as it appeared many of the PRESS did, as most shared it.

This LETTER I wrote in response to Lancashire Evening Post, my local paper and local team too involved, sums up my feelings and represented many Renal Patients too across the country and world too, who could not believe like me, that this was given time of day. I am known to be passionate, but this was no JOKING matter.

http://www.lep.co.uk/letters-emails/reader-s-letters-saturday-february-21-2015-1-7123525

Press Releases, spreading this even further, but what stuck in my kidney, was the cruel comments I read on several groups, features etc that ridiculed Kidney Donation. This is what annoyed me even more, the damage being done to Organ Donation.

http://www.independent.co.uk/sport/football/fa-league-cups/south-africanbased-preston-fan-who-offered-to-sell-his-kidney-for-a-ticket-talks-of-joy-at-being-given-ticket-by-fa-10049589.htm

http://bleacherreport.com/articles/2360463-preston-north-end-fan-in-south-africa-will-sell-a-kidney-for-man-united-tickets?utm_source=twitter.com&utm_medium=referral&utm_campaign=programming-UK

Despite my efforts trying to get the FA, I spoke to them receiving an email, to which I never got a response, following my response and further calls. I wanted a public APOLOGY for Renal Patients and that is what Patients shouted too on Facebook Renal Groups and some more, that I cannot share. But you have to remember the vulnerability and psychological places my fellow friends were in, many waiting for an Organ, some up to 17 years and this man makes a mockery like he did.

Many patients shared their letters received as I am doing now, standard letters from the FA and I was to be given same, until I said that this was not acceptable. This letter is still not acceptable, but I asked NHSBT and Renal Charities allowed posts on their groups, but it was too controversial ! Well damn right it was, for us as Patients.

My Letter from FA

Dear Ms Pooley,

I am writing in reference to the phone calls made to our Customer Relations team and Mr Mark Whittle, Head of Media Relations in regards to FA Cup tickets that were provided to the Preston North End supporter Mr Jackson.

This season has seen ‘The FA Cup Adventure Campaign’ in action which has been used to help promote the cup in this country but predominantly overseas. As Mr Jackson had flown from South Africa without a ticket it was felt this fitted in with what the FA Cup Adventure Campaign was looking to achieve.

The Football Association does of course realise the seriousness surrounding organ transplants and would like to apologise for any offence caused to you by us offering Mr Jackson FA Cup tickets. We are aware of the coverage Mr Jackson has subsequently received within the media and of the complaints posted on social media in relation to images that have been released by him. The Football Association does not endorse any of the phrases seen within the images posted by Mr Jackson which have since led to complaints.

As mentioned, the sole aim of providing tickets to Mr Jackson was to help promote the FA Cup adventure and due to the long distance travelled in the attempt to view the game, and nothing else.

I would like to thank you again for taking the time to contact us on this matter and please be assured your comments have been noted by Senior Management within The Football Association.

Kind regards
Jim

Jim Gay | Customer Relations & England Supporters Travel Club Manager
Communications Division
The FA
Wembley Stadium | PO Box 1966 | London | SW1P 9EQ
T +44 (0) 844 980 8200 | F +44 (0) 844 980 0670
info@TheFA.com | http://www.TheFA.com

This communication contains information which is confidential, which may be privileged, and which is for the exclusive use of the intended recipient(s). If you are not an intended recipient please note that any distribution, disclosure, use or copying of any part of this communication is strictly prohibited. If you have received this communication in error please notify us by return email or by telephone on +44 (0)844 980 8200 and delete this communication and any copies of it. The FA Group (which for the purpose of this communication means The Football Association Limited and its subsidiary companies including Wembley National Stadium Limited, National Football Centre Limited and FA Learning Limited) does not warrant that this email is free from error, viruses, malware, data-damaging material or other defects, or is compatible with your equipment or fit for any purpose. The FA Group may monitor, intercept and block emails addressed to its users or take any other action in accordance with its email use policy.

Statements or opinions may be expressed in this communication that are personal to the sender and do not necessarily represent the views of The FA Group or any member of it. Unless expressly stated otherwise, no member of The FA Group shall be bound by any contract or obligation purported to be created by this communication.

This communication has originated from the communications system of The FA Group.

The Football Association Limited (Company number 77797), Wembley National Stadium Limited (Company number 3388437) National Football Centre Limited (Company number 2523346) and FA Learning Limited (Company number 04249339) are all registered in England and Wales, with their registered office at Wembley Stadium, Wembley, London HA9 0WS. For The FA Tel: 0844 980 8200. http://www.thefa.com. For Wembley National Stadium Limited Tel: +44(0)844 980 8001http://www.wembleystadium.com.

 

VOICE TWEETING MORE…

Voice growing, as I create more, if I am feeling able to. It seems if I touch …Im making it happen or have some impact, I know that now at my age what I have achieved through my Renal Adventure.

Daily inspiring and supporting on Facebook Renal Groups, plus my 4 Facebook Pages. Please say hello and appreciate LIKES to my pages, this allows me more insights and reaches I believe. Being a Volunteer, managing all this, any support and belief is welcomed for not just me, but anyone trying to make a difference to others.

Respect to all Volunteers, who help the Charities and Organisations reach their goals and YOU can help, if you need any advice on how to do this, just ask me please.

March Therapy

March Therapy

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USEFUL LINKS….
ORGAN DONATION LINK

https://www.facebook.com/lorraine.pooley.820?ref=bookmarks

RENAL VOICE LINK

http://l.facebook.com/l.php?u=http%3A%2F%2Fwp.me%2Fp4XpX1-1Y&h=6AQHODbqS&s=1

EYE4NATURE formerly Lorri’s World (My passion for Nature shared to others to inspire and give hope….Wellbeing)

http://l.facebook.com/l.php?u=http%3A%2F%2Fwp.me%2Fp4XpX1-1Y&h=YAQH2JJvJ&s=1

 

PHOTOGRAPHY and Little Miss Snap Happy

Cornwall Coast Magic...at my Eldest Daughters Wedding I never  thought I'd make, but WOW

Cornwall Coast Magic…at my Eldest Daughters Wedding I never thought I’d make, but WOW

In 2014 I started my EYE4NATURE page to bring my photos I had an abundance of and taking daily, to a specific Community Page and it is working, I do include other interesting Nature articles too, I am hoping will inspire others to get their Cameras out and explore.

Connected also to FB Renal Communities, sharing adventures since my Kidney Transplant. I found my love of photography, I took in my ME time, from years of passion, was becoming even more helpful to so many struggling to get out into Nature and being inspired by my 3 years of TOUGH.

Now with more energy and enthusiasm, my renewed passion, lost over a long period of being ill was BACK and being able to be OUT into NATURE, being Snap Happy again,  this could only continue to help me as last year. A time when I had to live again, give back, explore, take on challenges and I photographed everything and this all contributed to my mental wellbeing. This in turn had a positive impact on the  psychology of other Patients and their families too and made me so happy this was happening and still is.

To be truthful, I am obsessed with Nature and Photography and have gone back to how I was when I was 18 with my Yearned for Olympus Trip. Evidence in thousands of photos, one envelope has photos on 5 ducks! Ha

 

PSYCHOLOGY & MENTAL WELLBEING

Forever thoughtout my life, I have had to and will continue and speak for many on difficult journeys, I look for Coping Strategues or mindful of ones that help me cope on a bad day or phase I am going through. Looking back on life, this was always the one.
Now in 2015 I want to develop my Photography more. It’s all down to time and I am a one Chick volunteer. Hope I can encourage others to take photography up, but my aim was and is to get Patients spirits lifted and give them hope to never give up first and foremost. Get out into Nature, watch in their own gardens, on their own doorstep, in their own community, just to bring a little in everyday.

It is just the best THERAPY and this year I am doing more, I have to keep my KIDNEY maintained and my LIVER happy too, so less Stress, more NATURE

I always welcome any feedback on my Blogs, I am ME and can’t and won’t change for anyone, I do say ‘I’ a lot, but does not mean I’m putting ME on a pedestal. What you see, hear is what you get, well not totally, as being Kind, I do have a quieter side to the voice, but Mystery is good. Lol.

Say HELLO on Twitter too
@PooleyLorri186

Eye4Nature is going on Twitter in April. Being amongst Nature is a fantastic Coping Strategy for me, even if it is an effort, you have to just take a step out of your front door and take it. Hard as it sounds, I could not do for months after my 1st Operation, but God knows, my inner strength got me out and I’m still out. But, also just looking back at my photographic memories of my LIFE, not just since my Transplant inspires ME and its me living more now to create more memories.

You should try and if you want tips or help, please ask me. Always happy to have a #PurpleChickChat

It’s always a good idea when you have any Chronic Disease, with everything going on in your head, write a few notes about what you have done in the day, positives, negatives and take a few photos if you can. As one day, you will be able to look back and say WOW, look at where I am now.

Invite NATURE into your LIFE

Invite NATURE into your LIFE

 

FEBRUARY….FEELING MY BOOTS

SPRING **MADNESS**

 My little Friend in my Garden……spent some cold days watching Garden Birds still Hungry

 

2ND ANNIVERSARY TRANSPLANT 13/2/15

So much has happened since my Gift of a Kidney from my Sister Melissa. Friends keep saying ‘Are you Better’, can’t say YES, I have Long Term Chronic Polycystic Kidney Disease, but am so LUCKY, LUCKY, LUCKY, as it can be managed and monitored.

 

Between TREES and ME there is an ENERGY

 

WHAT LITTLE SIS’s KIDNEY has done for BIG SIS

Having my Sister’s Kidney…well it’s the most wonderful feeling of LIFE running through your body again. Still pinch myself at what she has actually done. Where have 2 years gone, so much has happened. BUT I am sure making up for lost time!!

My youngest Sister Melissa is crazy like me, has a driven approach to life and doing very well following our live donation, living life as before, giving a Kidney has had not made a difference to her life, except she is a bit of a celebrity in my village, but wishes to keep low key for herself. We both respect each other’s wishes and throughout the Work Up, it is stressed throughout psychology assessments, that I must not be made to feel beholden to her for gifting me and she has not to expect the same and we both naturally agreed to that. If not, the transplant they would not go ahead with, they were strict on this and it would not have happened for us too.
NO PARTY, JUST NOISY LUNCH!

We had a special day out together, BIG lunch and a good, reflective laugh about our 2 year Journey from the 1st Work Up in 2011, to the Transplant in 2013. So many stories I will have to share about what happened to us, few below we laughed at. We had a lot thrown at us, appointment after appointment, set back after set back, but we laughed and the emotional drain on both of us and our children, plus the guilt too for me allowing my youngest sister, to donate. It all took some accepting. Gratefully, we kept each other positive. Right up to the point of Admission, we were both so focused.
CHORLEY FM RADIO
Chorley FM Radio kindly invited me back to give a 20 minute radio interview focused on our 2nd Anniversary, but more sharing Organ Donation and the NEED for more Organs coming from that.
Morning peeps! Join me Babs from 9am… – 102.8 Chorley FM https://en-gb.facebook.com/chorleyfm/posts/10153114196074243

Morning peeps! Join me Babs from 9am 102.8 Chorley FM on Twitter: “Morning peeps! Join me Babs from …
https://twitter.com/ChorleyFM/status/56542578 11 Feb 2015
ACCEPTING & ADAPTING to a TRANSPLANT

So I have a Recycled Kidney, enjoying life, although feeling the non visible effects of my life saving Anti Rejection Drugs more, which I am accepting and adapting to. Sometimes this makes people others, as Transplantees we come into contact with, astounded at how well we look, which does not always reflect the way we feel. But they are drugs we all need and HAVE to have, to help with the maintenance of our Organs. End of!
It would be wrong of me to say that having a Transplant is a Cure, as it is not. I would be letting the Renal Transplant Community down if I said different. Misconception, that it is by many, Patients and Families too Iv come into contact with, maybe not fully informed or just in shock at the urgency and intensity at the way Organ Donation is put upon them. However, it is important to note, especially for families and Carers, that it is another chapter and it can maybe bring forth other issues for SOME and I mean SOME, as we are all UNIQUE.

BUT and BIG BUT, if you are given the chance to have a Transplant, my view you take it, it is a GIFT of life, you living a better life and your family too. For some Patients, this is sadly not even an option, so,please at least consider and talk lots.

My #BootsOn wish is for anyone reading this, waiting on an Organ gets their WISH from someone you know, don’t know or Recycled Organ gifted to you by a DONOR, we must never FORGET the Donor and their Family too please.

 

DIALYSIS LIFE
The alternative for many is LIFE ON DIALYSIS, being attached to a machine 3 times a week for 4 hours a day, many are at home dialysing now and everyday too for shorter periods, to suit lifestyles, jobs etc.
I cannot sugarcoat this treatment for Dialysis Warriors, yes we are brave and have our pride, but simply, it is what it is and I got told, not to let it rule your life, but for me, I coped, but sorry, Monday was my only day for ME, I actually felt like leaving the house. So, as positive as I was and was told I was a model patient, noisiest bay on the Unit, it did RULE my body and how it reacted…but my Head took some accepting the shock of what was not supposed to happen.

Always had in my head “SOON” I will be out of here. Dialysing, yes brought me problems and can to others, dependant on the patiient, despite it keeping you alive. Positive is, you HAVE this option whilst waiting for an ORGAN, feel LUCKY, as some Patients DO NOT get the choice of this or even a TRANSPLANT in some cases. Look at LIVER, HEART, PANCREAS, LUNGs statistics and stories.
BOOTS ON…MY PHOTOS..MY WORDS..MY WALL..MY LOVE IN A MIST..MY BOOTS still 
Walking for ORGAN DONATION (fingers crossed always!)
Purple Chick …..STORYTELLER….YOUR STORY shares someone else’s STORY = AWARENESS

The week before our 2nd Transplant Anniversary, I shared my blessed Story, whereever I could, as a reminder, there are almost 7,000 patients waiting on ALL Organs in this Country alone. You only need to check on the NHS Organ Donation Online web site for shocking Statistics and questions you need answering. Hope these encourage YOU to Text 62323 or Call 0300 123 23 23.
NOTE:

* Anyone who gifts an Organ has to be sure of the commitment and what it entails. Any doubts,

please SHARE with your Recipient

*Selling an Organ in the UK is illegal and no Monies or promises of should be made.

*A Patient must not be made to feel pressured and likewise a Donor cohersed into doing this.
OPT-OUT…THE DEBATE….”COME ON ENGLAND”
Been involved in endless debates on Organ Donation and the complexities of Joining the Register and Live Donation. Having insight to these areas, it does help me in using my patient voice to many.
I just WANT our Government to bring in ORGAN DONATION OPT-OUT in England. Wales, Ireland and Scotland are on with this, but we are NOT. So hoping this is going to be a topic for debate sooner rather than later. Please share your thoughts.

At WESTMINSTER…TRANSPLANT WEEK…with the BKPA meeting with our MPs to discuss Organ Donation..

Spot the one in the Transplant Week T Shirt and Purple Boots….there for a reason!! Kick into ACTION


EMPOWERMENT
NOTE, we are ALL UNIQUE. So when you read a Story, this is not your Story, it may or may not happen to you, but just be INSPIRED by the positives more than the negatives PLEASE.
Facebook Renal Groups I still volunteer to, these are great places to connect with like minded patients,but again the same message has to come through, take what you can cope with and its not your life.
Empowerment about our Disease I do advocate for, but I didn’t really concern myself too deeply with my inherent disease until I was in my late 40’s and I have known since I was 26. I just LIVED, POSITIVE attitude to LIFE and had 12 Monthly Blood Checks.
OH YES…very important to ME and hope to you…. eating a Healthy Diet, No Smoking, No Drinking avoiding Stress!!! Well try…not easy? WATER, this all contributes to keeping your Kidney functioning well. I keep my fingers crossed everyday, sometimes I find them crossed without knowing, after 4 years of this Adventure!!
If you have history of Kidney Disease in your Family or maybe ask the question, have high BP, regular water infections and your GP does not pick up on this, please ask for Kidney Function Test and BP to be checked. Easy enough to do and it may save your LIFE.

http://www.chorley-guardian.co.uk/news/local/lorraine-is-given-the-gift-of-life-thanks-to-her-family-1-6433744

MY PATH

 

When you have been unable to touch what you love for some time, then you get the ability back, you crave it….and I crave TREES

 

This Month ..I am coming out of a difficult period of reflection on 2014, which lasted from October to January, no one would have known, as I carried my VOICE forward regardless, but did have quiet moments. It is very hard for me to take me away from where my spirit, mind and inner strength guide me. Always in the back of my mind, are others who are going through the same journey or about to, so didn’t switch off totally.
The POSITIVES far outweigh the negatives, but had to recognise, that for SELF PRESERVATION, it was important for me to face what I did and didn’t like about 2014 and who I did and didn’t want to work with anymore and what paths I had to continue going down. I had to turn so many offers of more Volunteer Roles down and Talks in 2014, I could not psychically or mentally do.
If everyone gave an HOUR a WEEK, it would help so many and you may actually enjoy doing.
If there is one lesson I have learnt, is that those, who do not respect, use, take advantage and cause me unnecessary stress, have to be stepped back from, to help me be the best at where I have true belief in what Purple Chick is trying to continue doing.

Always be prepared to walk down NEW paths and take on NEW challenges…………

 

 

CKD DESIGN EVENT ….VALUING PARTICIPATION
Attended this event by Invite from the Renal Registry, it was a well attended event, personally would have liked to have seen more Patient Voices, but happy I was not the only one.
This was my Patient response to email sent to me after the event.

Dear Colleague

I am in the process of writing the report of last week’s successful ‘Valuing Participation’ co-design event in Birmingham.

In order to capture some of the positive energy from the day and people’s perspectives on the event I would like to add a few comments to the report to help bring it to life.

I wonder if you would be able to provide me with brief answers to the following two questions about the day which I can then include?

1. Why was this event important to you?

2. What was the most important single thing you took away from the

MY RESPONSE

Q1. This event was as important to me, as all I have attended, all for the same reasons, being a Patient Voice and Advisor, my aim to bring Renal Patients an improved, safer, more supported Pathway on what is a very vulnerable, scary Journey.

The Patient should not have to alert Clinicians about the timing on their Pathway, the point at which assessment and progress has to be addressed, it should be in place. INTERVENTION at the RIGHT TIME, to avoid more Psychological impact and Acute Injury threat.
To VOICE very passionately, at every opportunity, about Dialysis Life and continuing to get the message across of how SPECIALIST this area of the Renal Pathway is.

To have the inconsistency across our NHS regions all recognising and importantly ACCEPTING and ACTING on what is right for the PATIENT, to make their experience in hospital, more comfortable in a scary, vulnerable place in their life. My QUOTE “What, When, If , How” approach to the Patient, as in GROUND BREAKING CUSTOMER SERVICE, which I link to PATIENT CARE and it will work!

More EDUCATION to all STAFF in their role, YES in RENAL area, but communicated to others outside our disease on the understanding of RENAL DISEASE, specific to that patient, i.e., I have Polycystic Kidney Disease, a growing disease that I felt some ignored in certain situations or did not read notes.

Agency Staff have inflicted almost Injury on me twice, whilst in a vulnerable place, so more Assessment, Shadowing, Handover improved, Notes highlighting for these with specific issues. To be honest, what should be happening anyway for any Patient on any Ward.

Importantly and did stress this and make it known last week, that on my agenda, the PSYCHOLOGICAL place Renal Patients find themselves in, has to be recognised and ACTED upon. Psychology support inconsistency across UK needs addressing and their availability to Patients shared, if available? I am finding more and more events I go to, I am one of a few patients only and find myself sharing Psychology for RENAL specific is not being taken serious. It will be a gross mistake to ignore this physical/psychology element of a Renal pathway.

2. What I took away from this event was the most organised, structured, involved, engaging Event centred on RENAL I have been involved in. I felt a real sense of Valued Participation. It was Active, Lively, Friendly and found the Interaction moving from group to group, a very inspiring idea.

To also be amongst a wide range of Health Care Professionals, I enjoyed having many varied, interesting, educating, positive conversations. Also meeting fellow Renal Patients, sharing thoughts and ideas, but have to say not the representation in numbers again, i would have liked to have seen.

From the Post-It boards bringing together answers to questions posed and the workgroups given a specific area to discuss, I felt a real sense of togetherness and passion. Found it to be a a group of like minded people, coming from different angles all wanting the same for Renal.

I just want ACTION please from this event, even if small, as a Patient, I passionately need to see changes taking place in the near future and not after month after month of more talks.

Only critisism as a Patient, although managed myself reasonably well, talking to some fellow patients, two who were Dialysis Patients, we thought the Speaker presentations were too fast pace and I struggled to write things down and gave up too. Also the movement from table to table and the limited time for answers, although enjoyable, It was very tiring for us.

Please give more consideration to the Patients, who are tired and on medications, who cannot keep up with the rest of the room. This happened at another conference I went too recently, mainly Patient participation. I was asked by a Speaker what I thought and related this back too. I know it’s hard squeezing everything in, with time constraint. However, it is constructive feedback, feel needs to be taken on board, to inspire Patients to return to the discussion.
RESPONSE

Hi Lorraine

Thank you very much for your response – all very useful indeed. We will definitely take not of your comments, especially with regard to how we care for patients during the day. It was a great event, so thank you for your participation and contribution. Best wishes.
DATES FOR THE ORGAN DONATION DIARY

WORLD KIDNEY DAY
World Kidney Day 2015 – Campaign Materials

http://www.worldkidneyday.co.uk/campaign-materials/

Download the World Kidney Day 2015 A5 Flyer (1.25 MB) · Download … their event. If you wish to apply for copies please contact info@worldkidneyday.co.uk.

BRITISH TRANSPLANT GAMES. July 30th – 2nd August, 2015

http://www.britishtransplantgames.co.uk/

TRANPLANT WEEK 7th -13th September, 2015

http://www.organdonation.nhs.uk/

Thankyou for reading….lots to share, but it is for a MONTH. May start to do Weekly, time dependant. Welcome your thoughts and I appreciate both negative and positive…OK?
Purple Chick…xxxx

HAPPY NEW YEAR….better late than never xx

HAPPY NEW YEAR

I am hoping as I type this tonight, that it will be posted before February 1st, to keep my promise to myself to POST my BLOG once a month, with a view to doing more. So I am NOT being distracted by TV, Twitter and Facebook tonight, promise!

 

Meet one of my sharp, smart Robins on my Patch

Meet one of my sharp, smart Robins on my Patch

CRAZY 2014

Those of you, who have read my previous Blogs, will have some idea of just what Iv been up to in 2014, coming out of a tough few years of operations related to my Polycystic Kidney Disease.

HOWEVER, blessed having the wonderful gift of a Kidney from my youngest Sister Melissa on the 14th February, 2013 made my whole LIFE a whole lot different and in reading my Blog, I hope you will see just how much. I will be opening up more in 2015 with some short stories, good and bad, I feel need to be shared. For awareness, inspiration, empowerment and patient safety.

Take the time to Talk, Share with your Loved Ones and Ring please

Take the time to Talk, Share with your Loved Ones and Ring please

GOODBYE 2014, ‘BOOTS ON’ FOR 2015!!!

http://www.chorley-guardian.co.uk/news/local/how-lorraine-s-spreading-the-word-after-her-kidney-ordeal-1-7025555

PURPLE CHICK ~ WHERE I AM NOW

Well Millie where to this YEAR

Well Millie where to this YEAR

I am still a Patient with Polycystic Kidney Disease, being checked still from having endured a long journey to my Kidney Transplant on 14/2/13. My KIDNEY maintenance is priority and have to take my anti rejection drugs for the rest of my life. My bloods are checked regularly and my kidney condition is kept under control. I feel very positive, I eat healthy and walk as much as I am able and laugh a lot and if I find that not happening, then I do something about it.

I had to learn to empower ME on my journey, with my own Patient Care. I also became aware of other patients around me and their particular worries and experiences, therefore, this then became my main focus coming into 2014.

My interest and main focus is The Patient, Renal being the Arena I am familiar with alongside my voice for Organ Donation, although I can relate to other illnesses too.

I have given of me voluntarily on Facebook Renal Groups, inspiring, supporting, making aware, guiding and empowering patients in their care and with their massive psychological journeys, as was mine.

I was successful with my Fistula Awareness Campaign, which took me to the NKF as a Patient Speaker and to the Involve Health Conference with my abstract around Fistula Awareness too.

I engage easily and am a natural connector, my transferable skills, just being me seriously, from years as a Manager working within teams, team leader, good listener, negotiator, collaberator, organiser of races for charites, events, fundraising and giving Ground Breaking Customer Service easily, which are useful in all areas I am connecting with.

image

Meet Quibela, we were meant to meet! Feel gifted to have met her during Transplant Week at Westminster and in Manchester. Sadly she died in September, she believed in me and we were going to be good friends. Complications on dialysis with an infection, she was not strong enough to survive. Why do I do what I’d do….Simple! Bless her, she had a smile to light up a room.

 

I am still a Patient Advisor to the BKPA, a Committee member of my local Kidney Patient Association, Patient Leader on NHS Steering Group, plus still help many on FB and Twitter. My voice is important out there I know that more than ever now, as a Patient and as a friend to many, who are struggling. From the positive feedback and thanks I do get, it is humbling, but I need to stress it is ‘my way’ and do not do for accolades.

 

I am empowering and encouraging and inspiring many for the good of themselves and others they come into contact with.

I am now coming into 2015, wanting to get my voice put to use to make more ACTIVE changes, small changes, changes that can be easily done with simple education and practice. Ground Breaking Customer Service! Simple.

My many interests get me involved with many people in my Community. It's not every day you chase a Stormtrooper round Morrisons at a Charity Event. Just missed Yoda I did! Like him I do...

My many interests get me involved with many people in my Community. It’s not every day you chase a Stormtrooper round Morrisons at a Charity Event. Just missed Yoda I did! Like him I do…

 

I feel I have a lot to bring to any of the discussions going on amongst groups I get involved with and hope I can still, from last year’s experiences, bring my Voice to the table from my unique prospective. However, I am always respectful of others I collaberate with. My views on here, Facebook, Twitter, in the REAL world, are my views and what I feel or hear from the Renal Community.

Dreamer by the Sea. My time out is important to me. It's important to all of us in Life.

Dreamer by the Sea. My time out is important to me. It’s important to all of us in Life.

DIALYSIS DE-COMMISSIONING

From my last Blog in December, the NHS England surprise proposal in November of De-Commissioning Dialysis and transferring the care of Dialysis Patients to local Clinical Commissioning Groups, well this hung over ME coming into 2015.

I was outraged, as many were, at the lack of respect I feel and still feel to the Renal Community at being treated in this way.

The battle began in November and details of what the detail was, as this is quite complicated is now on my newly created Facebook Page, which has come about, as my Facebook Account Page, I felt had to be separate.

I loved LIVE RADIO last year. This was at my local Chorley FM. {Check out my earlier show on Sean's Radio Show at North Manchester earlier in the year. Thanks to both of these for believing in ME.

I loved LIVE RADIO last year. This was at my local Chorley FM. {Check out my earlier show on Sean’s Radio Show at North Manchester earlier in the year. Thanks to both of these for believing in ME.

PURPLE CHICK’s RENAL VOICE

{NB: NO I am not forming a Choir, as one good friend asked..so funny}

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

https://www.facebook.com/PCRenalVoice?ref=bookmarks

I needed this as a mini blog, a way of updating Renal friends of what was going on more often and what I was actively doing. I found it hard last year at keeping a log of what I was doing too, although tried!! So hope it works and feel free to check me out. My intention is to add something daily and not been doing too bad!!

DIALYSIS ~ WHAT DO THEY KNOW

I wrote this POEM whilst on DIALYSIS in 2012 and have shared earlier in the year, but share now for ALL Dialysis Patients on their Daily Struggle, as I talk to hundreds every week and same issues, experiences, struggles still exist and many of these need ORGANS, some waiting up to 18 years.

As a Coping Strategy, I used to write Poems on Dialysis, kept me positive and released my feelings with my own sense of humour. You learn very quick to laugh at yourself in the face of struggle. But serious side to all I share.

MY FISTULA KEPT ME ALIVE....PROUD of MY LIFELINE

MY FISTULA KEPT ME ALIVE….PROUD of MY LIFELINE

A DAY IN THE LIFE OF MY DIALYSIS 2011-2013

Looking through the window, it’s rain today
That’s ok, as I can’t go out to play
Four hours to go on the Matrix, phew needles went in ok
Using my Emla cream kept the pain away
But lady across from me, new on here screams in pain
as the needles go in the wrong way
My Fistula has veins, juicy & strong
The poor ladies’s veins being so deep & feint, make it easy for needles to go astray
Sickness feeling, 1 hour in, fading now, but headache not gone
3 litres of fluid to come off my overloaded body, keeping strong Where is it all coming from?
I’m skin and bone, but the machine just keeps sucking me till fluid gone!!
Aah Tea & Toast at 10 is a treat, when the nurses finally get to me
As it’s hard for some to drink, with only one arm free
Head tired, need to sleep, catch up on last nights no rest
With uncomfortable kidneys, liver, aching legs & chest
Buzzers going off now, someone crashed or being sick again
Roll on 6 when i can get off this machine
Gather my bags, iPad, book, picnic box and go home to my haven
Home again, tears of tiredness, loneliness, my chair waiting to hand
Slowly take off my coat & my Fistula Awareness Band
Numb, no thoughts, aching like nothing else, paracetomal for me Two hours gone sat here, maybe should have some tea!
Naah, no energy, just going to go to bed
Snuggle my dog and bury my head
Safe now, home in my room with a view
Sleep now and wait till 5 for the moors & straight on the loo!

Lorraine Pooley {dialysis 2012}

Like Gracie I like to always look at the Bigger Picture in Life

Like Gracie I like to always look at the Bigger Picture in Life

 

So just made Posting my BLOG…and now of course on Valentines day, 14 days from when this WILL be posted, is my 2nd Anniversary. So you many be lucky and get the pleasure of another of my Blogs before March!!!

GIVE IT YOUR ALL FRIENDS

GIVE IT YOUR ALL FRIENDS

 

I want to say I CELEBRATE everyday, but it is important to share this GIFT, as I use my story for awareness for the thousands waiting for organs still and the ones about to need one. Life changes for many in a minute.

https://www.facebook.com/lorraine.pooley.820?ref=bookmarks

Well my Deers......till my next Blog...x

Well my Deers……till my next Blog…x

 

FORTHCOMING KIDNEY EVENTS FOR YOUR DIARY

World Kidney Day is

http://www.worldkidneyday.co.uk/campaign-materials/

I am planning for World Kidney Day on the 12th March, anyone wishing to support me on the day by inviting me into your Business, Group, Class, Team, please connect with me @purplechick820@gmail.co.uk.

I am happy to come and chat, present in a way that is not pressured, just informative with my DR Martens, Voice and my ethos in life ‘Emphasis on Fun’. You may just be surprised how I can bring laughter into something very serious, Try ME. It can be either side of 12/3/15

The Renal Charities will all be involved and where I am needed or where I can be of help I will do. More to come in next post.

Thankyou

PC

Through the Mangle But out the Other Side BOOTS ON

Through the Mangle
But out the Other Side
BOOTS ON

COLOURFUL CHRISTMAS WISHES……Purple Chick

Beautiful hedge lined  lane, with every hedge fruitfully laden with berries galore

Beautiful hedge lined lane, with every hedge fruitfully laden with berries galore

XMAS HELLO

A very berry Xmas hello and I just want to say again, I am so grateful from my Kidney, to all of you following me and with such lovely words.

I am sorry to have not written a Blog for some weeks now, it is something I am committed to and missed doing, however, 2015, there will be more ‘VOICE’ from me, as I have so much to share.

 

EMPOWERMENT CHALLENGE

My time has been taken up recently with personally chasing my tail with the NHS, with various issues concerning my own Health, the constant chasing up of things, lack of communication, understanding and the stress upon our NHS Staff, which in turn is affecting Patients like me still. Empowerment is going to be even more a thing of the future. However, what about the Patients without a voice, too sick to even think about….mmmm.

 

HAEMODYALYSIS /RENAL DIALYSIS THREAT

In August 2014 Dialysis Funding was threatened, however, due to lots of PATIENT POWER voices, we showed the NHS and shocked them into reevaluation.

FIGHTING ON DIALYSIS TO FIGHTING FOR DIALYSIS

FIGHTING ON DIALYSIS TO FIGHTING FOR DIALYSIS

 

CLINICAL COMMISSIONING GROUPS proposal? What?

However, shockingly last month, more proposals to how DIALYSIS was to be implemented in April 2015 were announced by NHS ENGLAND, proposals that our SPECIALIST Service for DIALYSIS be turned over to Clinical Commissioning Groups, which is so WRONG and to me clearly demonstrating the misunderstanding of the DIALYSIS LIFE by the NHS!!

It has angered Patients, Renal Charities, some MPs and others connected to Renal Health and causing massive upset to many on Dialysis or just about to go onto Dialysis, about their future Patient Care and Safety from April 2015.

 

FISTULA…..BE PROUD

I have had endured Dialysis treatment and I have seen, heard, experienced, lived the struggle of being on a busy Dialysis Unit, understaffed and stretched to the point that patient safety was compromised. So now NHS are even think of doing this to Dialysis Patients, when the system is already stretched beyond current funding, is in need of a turn round, in my opinion.

MY FISTULA KEPT ME ALIVE....PROUD of MY LIFELINE

MY FISTULA KEPT ME ALIVE….PROUD of MY LIFELINE

 

RENAL FIGHT GOES ON….RECOGNITION  PLEASE?

Renal Patients are now again having to Fight for yet more Recognition of a disease grossly misunderstood and the Psychological Pathway not being addressed. At this point RIGHT NOW in time, Patients are being asked to write to their MPs and complete forms outlining their treatment, to be sent to NHS England, to share the DIALYSIS treatment they have, to give insight for proposed move…. BUT in doing this it’s NOT OK for Patients to be worried about the possible changes to their treatment, disgusts me.

FELLOW TRANSPLANTEES from TRANSPLANT GAMES. This is WHAT ORGAN DONATION is about....GIVING LIFE

FELLOW TRANSPLANTEES from TRANSPLANT GAMES. This is WHAT ORGAN DONATION is about….GIVING LIFE

 

LINKS to DIALYSIS FIGHT

This Link explains the situation, which is, as you will see is complicated, as nothing has been shared clearly anyway…….

http://www.pkdcharity.org.uk/news-events/consultations/182-dialysis-commissioning-proposals-get-your-voice-heard

Christmas  Wardrobe out for 2014.... Be colourful and live!

Christmas Wardrobe out for 2014…. Be colourful and live!

MY PERSONAL CAMPAIGN…..emotionally driven words, but gets the message across. PLEASE SIGN and SHARE, every signature counts…Thankyou.

https://you.38degrees.org.uk/petitions/renal-dialysis-needs-to-be-run-by-nhs-england-in-2015

 

AUTUMN…..MONTH OF COLOUR, RECYCLING, LEAVES…BERRIES

Keep Colour in your Life. Berries represent many things.

Keep Colour in your Life. Berries represent many things.

On a more POSITIVE note, AUTUMN has been one of the nicest ones I have been able to enjoy for some years, it has presented the most wonderful colours and finds, wet at times, but all adding to wonderful venues I have been to. What has added to my Autumn is joining a Funghi Group, which has opened my mind to this very wonderful, fairy like world, which suits me, being into Fairies etc.

 

POSITIVETY……My Grandson

 

 

image

 

I have been making great use of my easy to use Samsung Camera, which is inspiring me to look at so many different beauties out there on my explorations. I have always loved My local Woodlands, Trees and surrounding Nature. However, this Autumn, Funghi, as mentioned becoming a real focus for me, has become a therapy, taking my mind of stresses I have had. Plus now I have become more aware of just how beautiful, colourful and the abundance of varieties there are.

 

…………ooooh YES FUNGHI Galore!!

 

The Thrill and Frill of this beautiful Funghi flirting with it's skirt

The Thrill and Frill of this beautiful Funghi flirting with it’s skirt

 

The Funghi to nature is important and to Foragers it seems very much, so I say KEEP OFF!! I am totally against Foraging and very much into preserving Nature and the beauty we have. But sadly, there is greed, selfishness and lack of respect from many and seen so much evidence of this on walks and through social networking and it’s stripping our woodlands and in many places unlawful quantities being removed.

The delicate underside of a fallen beauty

The delicate underside of a fallen beauty

 

BOOTS ON PURPLE CHICK …….made a great team this year YES

It’s been a Crazy Year and I have not been able to share more my of Blog stories with you, but I will make great effort to do this in 2015 and everyday in my life brings something unique or I make things happen. Life is never boring wearing my boots.

There is LIFE in these old BOOTS still {fingers crossed} 2015 bring it on!

There is LIFE in these old BOOTS still {fingers crossed} 2015 bring it on!

 

RENAL FRIENDS OLD, NEW & DICEASED

I have been blessed by the belief of many new friends, followers, acquaintances this year, keeping me strong and I achieved what I set out to create, but also achieved in areas Iv been invited into and Iv taken me down many interesting paths.

I met 'Quibelah' in Transplant Week twice but was at Parliament for Organ Donation. She was new to Dialysis & my new friend died a month after this photo. A great loss of a brave woman, who suddenly picked up a virus that put her into kidney failure.

I met ‘Quibelah’ in Transplant Week twice but was at Parliament for Organ Donation. She was new to Dialysis & my new friend died a month after this photo. A great loss of a brave woman, who suddenly picked up a virus that put her into kidney failure.

 

All achieved is with THE RENAL PATIENT in mind, whatever Iv done or given, I have not shouted from the roof tops and actually don’t get excited when I do achieve, as it’s not why I do it, I do it, with the support of many as it’s what is NEEDED and it’s ME. Many Patients, who cannot VOICE, put their trust in me to get a message out there and I always feed back. The more that have Transplants, the more will empower and do the same I’m convinced and pray for them.

Transplant Games....amazing experience

Transplant Games….amazing experience

 

So PLEASE keep in mind our Dialysis Patients on Machines 4 hours, 3 times a week, cold, scared, struggling, sick, lonely and vulnerable, many going home alone! Support your local Dialysis Unit and a spare fleece will make someone’s day…4 hours cold on a machine is no fun, believe you me!!

Keep at it....that's all Dialysis Warriors can do.

Keep at it….that’s all Dialysis Warriors can do.

We need more Donors joining our register, please see the link below and join in the NHS ORGAN DONATION XMAS WISH CAMPAIGN ……

https://www.thunderclap.it/projects/20303-make-a-donationwish-this-xmas

 

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MY passion to NHS ORGAN DONATION on my FB PAGE is growing slowly and reaching more, but would like to reach 500 ASAP to allow me to get more insights and reaches with your help, please take a look, add comments and ask me anything.

https://www.facebook.com/lorraine.pooley.820?ref=bookmarks

Coping Strategy lives on with my love of Trees and Autumn, my leaf collection amazing

Coping Strategy lives on with my love of Trees and Autumn, my leaf collection amazing

 

This VOLUNTARY CHICK is having some ME time over Christmas with my 3 young Adult Children, my Grandson, my Dog. Millie and the Chicks. It will be a time of laughter, reflection, Superheros, Star Wars, food and more food, but most of all FAMILY TIME.

BOOTS ON. WISHES

Different Colour, Same Message always....

Different Colour, Same Message always….

Purple Chick.   Xxxxxxxxxxx

MERRY CHRISTMAS MAY IT BE PEACEFUL BLESSED WITH LOVE AMONGST FAMIly & FRIENDS....Millie and I are just the best of friends....xx

MERRY CHRISTMAS
MAY IT BE PEACEFUL
BLESSED WITH LOVE
AMONGST FAMIly & FRIENDS….Millie and I are just the best of friends….xx

HOW DO YOU STAY POSITIVE LORRAINE?

POSITIVETY & ME?

My love of Outdoors is in my blood, but a coping strategy  not just for me?

My love of Outdoors is in my blood, but a coping strategy not just for me?

Firstly, it has taken me almost three weeks to actually get this Post out to you, it has been on my mind to do and as I write very much from my kidney and words knocking around in my head always. Now I am sat in IKEA following another NHS meeting I have been to for better outcomes for patients and it feels right time to talk positive, as felt my voice was heard and RENAL was brought into the equation where it was needed and embraced.

Having a VOICE and being a Patient given to not saying NO as much as I could in the virtual world has demanded of my voluntary time I give, hence my BLOG passion has been put on hold. I could write a BLOG everyday, but depending on feedback maybe this will happen. I never know or plan.

I get asked on a regular basis by patients I have connected with on Facebook Groups, Twitter, Charities, Hospital, Clinics, Morrisons?? who I have inspired or who have found me….

How do you stay so positive Lorraine or Purple Chick?

MAGIC POTION??

Invite Colour into your Life

Invite Colour into your Life

I am ME, a patient YES, but Iv been on this earth some time now and lived some adventure and fingers crossed it will continue.

I cannot really own up to having a ‘how to do list’ to how I actually have had this attitude to life and resonate this to others and it is not something I actually have to work or have worked at or practice.

I am no clinician, no expert on psychology, yes a proud Mum, ex Manager {jan ’14} and lots of interests, so other than being approached by anyone that needs support or guidance, I am guided to these people in my life or I have sought as part of my giving something back to others and I am a chatty, natural connector & love meeting people. Plus it’s just not in ME to be negative, as corny as it sounds, its very much what I have always been like, laugh lots, been called entertaining…always makes me smile if I can turn someone’s day round and found from a young age, that now I can say, it is me and comes from WITHIN.

Believe in You

Believe in You

FROM WITHIN/INNER STRENGTH

I believe our ROOTS are very much a source of who we are and sooooo PROUD of mine. Being the eldest of a family of 6 in a vibrant village community on a lovely, lively council estate in the 60’s, well this sociable KID just learned how to survive from losing her dad and had to become a team leader and motivator back then too for 3 sisters and 2 brothers.

I can now say I am PROUD that the younger ME was a caring, kind, driven, passionate, embracing 11 year old, who just got bigger and wiser, having absorbed 11 years of the support and love from her community champion Dad to inspire her in those early days!

Plus a crazy family on both parent’s side, who nurtured us all, personally my Nana on my mums side was my angel and she believed in ME, knew what I was up against with my treasured school work I loved and listened and helped me to do what I was doing for my siblings whilst my Mum had to go out to work.

Crazy then, Crazy now

Crazy then, Crazy now

CRAZY MUM

Having been over this past 29 years very much a positive Mum to 3 and now onto being a Nana too, enduring a psychological journey these last few years with my POLYCYSTIC Kidney Disease, Fistula Access, Transplant, Hernia,  this positivety has been tested many times and still is.

However, I adopted the attitude without recognising, that this barrier I had…well nothing seemed to ever hurt as much as losing my DAD, this was proven, as I had such inner strength and my Dad was in my heart always,always! At desperate times, I talked to him and remember saying…come on Dad..xx

For me to have survived my journey, as many patients with chronic disease do everyday, I was seen as a very complicated patient to my surgeons, who were baffled by what happened in my first operation.

The drive within was so strong, I just kept coming back from near death 3 times in 6 weeks. I forget that some time.

BUT HOW GOOD DO I FEEL SAYING THAT NOW??

image

One Happy Chick Embracing Life

ARE YOU A POSITIVELY DRIVEN PERSON, HOW ARE YOU PERCEIVED?

All the above, aside from being positive and driven, I have struggled at times with being this totally, as I believed, like many patients, I could cope?

Reality was for ME, in end stage renal failure, I am human, I was far from fine and it needed a renal psychologist offered to me to make me see that.

YES..my attitude from my Renal Psychologist was…..’you are doing great Lorraine’ but you need to reach out to those around you, instead of you being the one looking after them!!!

That for ME was the toughest challenge, being an Independant, Strong, Hard Working woman and Mum, being told to open up more to my children and friends, plus take or ask for help. But I did, it took me time, emotional ride, out of my comfort zone, but I embraced and accepted these positive words and my life changed from not feeling alone totally to feeling less vulnerable.

Embrace Life

Believe in YOU

SUMMARY OF MY COPING STRATEGIES & POSITIVETY

*Accept changes
*Adapt to changes
*Move forward
*Try not to dwell
*Low days are normal
*Do not be too hard on you
*Focus on the moment
*Do not think too far ahead about what may not happen
*Have goals, dreams, but set your sights lower, then anything above & beyond is a bonus
*Accept help
*Lose pride and ask for HELP
*Surround yourself with positivety and negativety being directed your way, try to ignore or step back from
*Put you first, as selfish as it is, it is about you if you are trying to survive with a positive attitude
*If psychologist or social workers are not offered to you, then ask for! The service is there for many, but inconsistency across the country I hope to challenge more and more on my mission. I felt lucky, was lucky and listening ear from non family or friend is important on any long term illness pathway.

Do you practice these or find of help on your journey?

Life is full of Paths

Life is full of Paths

BOOTS ON

The above are my thoughts and an idea of where I feel my positivety comes from, my way , if you even try to do something positive everyday, however, small it is, in time you will like this empowerment. This will grow, never give up, we are all unique, different bodies, minds, complications, backgrounds, bigger pictures. It also takes a lot of energy and tears for many who are more  vulnerable or their  bigger picture dictates much more outside support to help achieve even the smallest achievement. Be respectful of yourself and ask others to accept this about you.

Never Give up Hope

Never Give up Hope

DO NOT CHANGE YOU FOR OTHERS

I need to end this by saying for me personally, I am not willing to change for anyone with my approach to life, but for me POSITIVETY has got me through my whole life and others I have met, who ooze this.

However, it also attracts negativety, jealousy, selfishness, envy, backing off, threat to some. BUT I see that as their issue and not mine. I am ME. It can be lonely sometimes, but only if you allow it. I don’t allow it. Journeys make us strong warriors and my BOOTS ON & VOICE keeping at it.

Be Proud always

Be Proud always

Please feel free to give me feedback, I hope I have made sense, inspired and touched anyone, who has endured similiar experiences and how it has affected your life.

Be happy with you, keep at it.

From my Kidney

PC xx

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