During my first year in college, we had a ‘Higher Education Conference Day’ where guest speakers were invited in to deliver talks about their experiences or something that they are interested in or passionate about. One of the talks I attended was delivered by ‘Purple Chick’ on her organ transplant story – I remember finding it both an interesting and eye-opening talk so I thought I’d reach out to her on twitter to see if she’d be willing to share her journey on my blog, which she agreed to do, so here goes…
ME: Tell us a little bit about yourself
PC: I am a Kidney Transplantee still living with the Rare Polycystic Kidney/Liver Disease. (Although both my kidneys and liver are affected, Polycystic Kidney Disease in the NHS refers to both the kidney and the liver). My Sister donated one of her kidneys to me on Valentines Day 14/2/13. The greatest gift.
ME: Tell us a little more about what Polycystic Kidney disease (PKD) is.
PC: Polycystic Kidney Disease is a rare genetic disease. It is a silent disease. It’s only when either someone dies in your family or they show symptoms of swelling on the tummy, raised blood pressure or renal failure that PKD is discovered. My Grandad died aged 42 from PKD, leaving My Nana with 6 Children. My dad died aged 36 from a Brain Aneurism linked to the PKD – it affects Kidneys, Liver, Spleen, Heart, Pancreas and brain as the disease progresses, and can bring other health issues too, however, every patient with PKD is different. He left behind 6 children. We were screened after his death but PKD did not show up. 3 of my Dad’s Siblings also died from PKD not being picked up – they all had heart attacks under the age of 50. I Knew them all. Losing my dad, all his family and my Nana (their Mum) was tough to take. But this is what the disease does to families. Now, I, 3 of my sibling and my son have PKD too.
ME: I’m so sorry to hear that PKD had such devastating effects on your family, is PKD a life long disease or can it be cured, treated or managed in any way?
PC: PKD is a long term chronic progressive disease with no Cure. Many patients end up on Dialysis machines for 4 hours, 3 times daily. And many cannot have dialysis at all – It’s a complicated disease.
ME: So in terms of organ donation, how long does the transplanted organ function for, because I’m assuming it’s not a “quick fix” as PKD is a genetic disorder?
PC: A transplant is a possible treatment for those whose kidneys and/or liver both fail, IF that patient is well enough to undergo the surgery. A transplant is not a cure, but it saves lives. Lives that would have been stuck on Dialysis – a treatment that many die on, or become too sick from to then go on a Transplant List. No, it isn’t a ‘quick fix’, a transplant can last anywhere between a week & 40 years. That’s got to be worthy of a chance though. Dialysis is an ‘existence’ and how it feels, I doubt anyone would even know. You feel like life is being sucked out of you whilst it draws out the extra fluid your kidneys cannot get rid of.
ME: Of course, I can’t possibly know what dialysis feels like, as I’ve not experienced it myself, but I can imagine it being extremely exhausting and potentially leading to a poor quality of life, and like you said, if an organ transplant improves quality if life, it’s got to be worth a chance.
PC: PKD is genetic and even though I’ve had a transplant, I’ve still got the disease. But the donated kidney is not affected so it’s worth every breath. Dialysis sucks the life out of you energy wise. Numb is the only word to describe it. Sleep is what you do, your appetite is bad, you lose weight, leading to anaemia and other complications.
ME: Oh right, so donated organs aren’t affected by the disease?
PC: The donated organs are not affected by the PKD. Transplants in some other Renal Diseases sadly that are short lived, as their disease attacks the Kidney. I’m at the same risk now, where picking up infections are concerned, as I was when I was on dialysis though. The anti-rejection drugs and other medications I take lower my Immune System too.
ME: So, were you on the organ transplant list for long before your sister donated her kidney to you?
PC: You have to first go through a process that deems you fit for a transplant. I went on the list and my sister stepped forward not many months after. It’s all a bit of a whirlwind.
ME: That’s such an amazing thing for your sister to do! I think people often assume that you’re all better once you’ve had a transplant, but ofcourse that’s not always the case is it?
PC: Yes people do think you are better. It’s a frustration that I do feel strongly about. One has to remember, PKD is a Chronic Condition and is ongoing despite treatments. It needs to be a disease that is brought up in the list of Chronic Diseases.
ME: How different do you think you’re life would be right now if you weren’t fortunate enough to have received a transplanted kidney?
PC: I would still be stuck on Dialysis 4 hours 3 times a week. Unless another Kidney became available, but that could have taken years. And would my weak, stick thin body have coped the longer I was on there? Dialysis did not suit me. Due to my complicated Kidney, Liver and the life threatening operations I’d had, I had to be handled carefully. My life would be shut in 7 days a week, 3 days taken up with Dialysis and missing out on 3 children and grandchildren. Mentally the whole journey is still raw.
ME: I can’t imagine what its like to go through, it must be so emotionally and physically draining! As a recipient of a donated organ, what is your stance on the current organ donation system in England? Do you think we should be moving towards the opt out/deemed consent system like in Wales?
PC: Absolutely and I’ve spoken to NHS Blood & Transplant recently about this – Opt Out and also to respect the donor’s wish and STOP intervention from family after death. In Wales the opt-out system is working. One of my friends, who I met through Social Media, from Wales, was one of the first to receive a lung transplant when Opt Out was put into place. Look at the statistics of the patients that are no longer deemed fit for Transplant after waiting for so long. Some are/have been waiting up to 18 years or more, lives are lost because of this.
ME: So in your opinion, should we have a hard opt out system where the family can’t object?
PC: Yes Hard Opt Out. This cuts out the risk of losing organs waiting to be transplanted. Let the Surgeons do what they are good at. We lose many transplantable organs from families intervening. It’s all been an emotional journey and still is. I would not have given an interview like this, but that day we all met, I felt positive that you all took on board what I said. I’m happy to help you.
ME: Thank you for agreeing to do this, it was such an eye opening experience and a privilege to meet you! Would you like to add anything else, a final message to the readers of the blog?
PC: It’s ok. It’s all awareness. I would urge everyone to talk about what each one of them wants happening to them after death – Wills, wishes for belongings, and also their body. Yes it’s depressing but the anger, frustration, the decision making after death is all written down or shared with their loved ones. A will is not the place to register Organ Donation wishes, you must go online or call NHS Blood & Transplant, then tell family if you wish. Families have a part to play in this, but shouldn’t stop donations going ahead. I feel this would be avoided if it’s explained before death.
Many thanks to Purple Chick for sharing her story with us (and also Happy 4th Transplant Anniversary – Valentine’s Day 2017)! I hope you’ve all enjoyed reading about her experiences as I did when I first heard her talk at my college conference day!
Do follow her on twitter: https://twitter.com/PurpleChick820 (@PurpleChick820)
And on Facebook: https://m.facebook.com/Action4OrganDonation/
Message behind the photo in the header, in PC’s own words…
“One of my favourite after-transplant photos – Light at the end of the Tree Tunnel. Trees are special to me. Nature Therapy is what I’ve always turned to throughout my journey, and my life. I would look through my albums of photography when on I was on dialysis, which gave me hope to get back out there. Now nature and wildlife are a big part of my ongoing recovery. Especially trees, sparrows and starlings. This is where I am now – not as sociable in society but love my garden and bird watching!”