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.
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.
* 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
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.
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.
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
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.
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
Download the World Kidney Day 2015 A5 Flyer (1.25 MB) · Download … their event. If you wish to apply for copies please contact email@example.com.
BRITISH TRANSPLANT GAMES. July 30th – 2nd August, 2015
TRANPLANT WEEK 7th -13th September, 2015
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?