Preparing to go to the Young Adult Kidney Group Residential Weekend 2023 as a PD Patient
I am so excited to be going back to the all expense paid Young Adult Kidney Group (YAKG) Residential Weekend at Mount Cook Adventure Centre this year. I went last year for the first time and had a fantastic time. It was my first dialysing away from home without my parents or family and felt like I came away from the weekend with so much renewed independence and vitality for life.
What is the YAKG Residential Weekend?
Simply put it is a FREE long weekend holiday for young adults (18-30) with kidney disease run and paid for by the largest patient focused kidney charity: Kidney Care UK. The 4 day and 3 night experience allows you to completely immerse yourself in the scheduled activities which range from outdoorsy physical activities like rock climbing, abseiling and archery to soft skill team building activities and crafty projects.
From my experience of the weekend last year, both attendees and volunteers who help run the weekend are either kidney patients themselves or know someone who has been affected by kidney disease. The weekend is open to everyone who has kidney disease, no matter where you are on that journey: CKD stages, on dialysis or post transplant.
For me this was the first time that I was able to meet other young people with kidney disease and was a transformative experience. When you get a group of 50 something young people struggling with kidney disease.... boy do we have stories to share. It is an incredibly life affirming and almost comforting experience to be able to talk to other young patients who are also going through the same struggles with the medication, the drain pain, the renal diet and just work and life in general and its even better when you hear and see other young adults who have come out on the other side post transplant.
For more information, you can check out the Kidney Care UK website:
Young Adult Kidney Group (YAKG) | Kidney Care UK
What to Prepare as a PD Patient Going to the YAKG Residential Weekend?
I remember my first time dialysing away from home was incredibly scary for me and when I first went to the residential weekend last year, it was the first time I was going to be dialysing away from home and without a family member with me!
So, I thought I would put together a little checklist for those who are as anxious as me about the ordeal and just outline what the different administrative steps you would need to take to go! But don't let this put you off, the detail in the preparation is there just for your benefit and the reward of going at least once is unparalled in opening up opportunities you would never would have known if you hadn't gone!
Registration + Medical Forms + Media Consent Forms
This is an annual event run by KCUK and by following the YAKG social media platforms, there is always a blast of posts announcing the opening of registration. There is an initial registration form with your general personal details and current medical condition which is then followed up with a more detailed medical form and media consent forms. This year, all forms were completed electronically and consent forms are sent directly to your nephrologist and medical team! It's a pretty easy process about 5mins and however long the wait time for your medical team to confirm your bill of health to go!
Email Confirmation + WhatsApp Group + Buddy Contact
Once your place has been confirmed by email, you are added to a Whatsapp group and assigned a Buddy, who is one of the volunteers who will run the weekend. Nothing for you to do here other than either mute the never-ending stream of messages on the group chat (seriously like excess of 1000msgs in a day) or be one of the many enthusiastic typers. Your buddy is probably your personal contact whom you can discuss specific details like travel plans or any concerns you may be anxious about in the weeks leading up to the weekend.
Free Transportation There and Back
To my knowledge, each year they have organised Coaches coming from London with various pick up points along the way to Mt Cook Adventure Centre in Matlock, near the peak district. Patients come from all over the UK and some do travel via public transport or drive there. Don't worry they will help you lift that Baxter machine into the coach and into your room.
Important to note that all travel expenses were paid by KCUK, at the end of the weekend we were able to claim travel expenses which included petrol expense on a x pence per mile basis. So, the entire weekend really does become all expenses paid! Last year my parents drove me to the adventure centre and we received compensation for our fuel. You'll note that the expense refunded is more than typical fuel prices because the x pence per mile will also take into account the wear and tear damage made to the car during the journey. Some tax knowledge from an accountancy trainee 🤓.
Delivery of PD fluid
As a Baxter PD patient, we are fortunate enough to be able to deliver our fluid AHEAD of our arrival at the centre. To do this, all you have to do is contact your pd unit and let them know where, when and how long you are going away for and include the contact details of the Mt Cook Adventure Centre and the person receiving the delivery.
This was totally game changing for me. Previously, my dad would load the car up with my baxter boxes when I would go on mini breaks and dialyse in multiple hotels. However, if you are staying in one location as we were in over the weekend, having fluid delivered is such a time/space saver!
For your convenience, I have lifted my email template that I sent to my medical team at the end of the post for members.
You can always give the organisers a call or ask them to call you once your fluid has arrived, which is normally a couple days before. That was always a really big comfort for me!
Packing Ancillary Dialysis Stuff
It is important to note that Baxter will only deliver the bags of fluid both extraneal and dianeal but none of ancillary stuff nor a machine! So, be sure to include all of the extra stuff that you use to perform your dialysis! This is probably the anxiety inducing checklist that you'll want to triple check, I know I did.
I have created a Packing List for PD Patients dialysing at Mt Cook below at the end of the post for members!
I have managed to shove everything in one side of a suitcase and have the other side with just clothes and personal items but you can totally see how important it is to check and double check you have absolute EVERYTHING you need to perform your dialysis protocol safely. I really recommend you perform your dialysis one night using your packed items (obviously restocking once used) to double check that you have absolutely everything you will need!
And... that's it... on the dialysis prep side of things.
I know it may seem a lot of work and super scary but I promise you it's worth it and you don't have to do all these tasks in one day! Registration is normally one to two months before the weekend in September so you have quite some time to prepare and ask as many questions as you need with your Buddy and the organisers - they are all lovely and helpful!
I really cannot recommend going to this weekend enough, it was so eye opening to see other young people on dialysis and post transplant. Up until that point I had never seen anyone really in my clinics remotely close to my age and that was even at the paediatric clinics! The weekend aims to challenge patients to look beyond their disease and alter their perceptions of themselves from patients and back to the young vibrant people that we are!
I hope this guide can arrest some fears for PD patients dialysing away at Mt Cook, I will soon create a guide on dialysing in hotels and travelling around by car with the Baxter Machine + Fluid in boot!
Wishing you well on your kidney journey! Lai x
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Lai
