It’s Kidney Health Week (#KHW15) next week. And Kidney Health Australia has asked people to share their kidney health stories.
I thought about contacting them to share mine, but my story isn’t much of a story at this stage. It’s more like a prequel. So I’m sharing it here instead, and if anyone thinks it’s worth sharing around to raise awareness, then please do so.
And if not, no problems. But you might learn something new about me. You might even learn something new about someone you know who seems perfectly healthy and carefree, but is actually carrying around a disease and the knowledge that one day, that disease will render one or more of their internal organs useless.
Here goes:
I have polycystic kidney disease.
It’s something I’ve discussed on the blog before. But it’s been a while. And things have changed around here since then. So it’s time to discuss it again.
I discovered I had polycystic kidney disease (PKD) when I was 20 years old. My brother had just turned 18, and mum told us we were both at risk. It’s a dominant-gene thing, my form of PKD. Our dad had it, so our chances were 50/50.
We were both tested. They found no cysts on my brother’s kidneys (and still haven’t to this day – HOORAY! – although that technically doesn’t rule it out yet). Mine? Well, let’s just say that the nurse doing my initial ultrasound mustn’t have known why I was there. Or figured I already knew. Or decided to try and calm my nerves with over-the-top chirpiness. “Ooh, there’s a cyst! And another one! My goodness, there are a lot of them! Look at them all clustered together there!”
So what does it mean? Using the most basic terms I can (because let’s face it, that’s how I understand it myself), having PKD means that my kidneys are covered in cysts. They continue to grow, and I can’t stop them from doing so. And as they grow, they impede kidney function to the point where one day, my kidneys will fail.
Kidney failure is a long way away. Kidneys are resourceful; according to Kidney Health Australia, people can live a near normal life with as little as 20% of their total kidney function. There were other, more immediate concerns. Kidneys control your blood pressure. And at 20 years of age, mine was already high. (And high blood pressure affects your kidneys. It’s a fun cycle where each condition exacerbates [and potentially accelerates] the other.)
High blood pressure and PKD are also connected to strokes. And, given my family history (both my father and my grandfather died following strokes), I was immediately checked for aneurysms. I’ve had surgery on cranial aneurysms four times, and thanks to the miracle of modern medical science (and the femoral artery), they’ve not yet had to crack my skull open to perform said surgeries. Although telling people that you’re limping because you just had brain surgery raises some eyebrows.
Boohoo, right? Not really. Knowing I have PKD actually puts me in a great position. I discovered as a fit and (outwardly) healthy 20-year-old that I have to manage my blood pressure and take care of myself. I know that I have cranial aneurysms, and while not all of my surgeries have been successful, I’m in a great position because we know what we’re dealing with. We know the risks of action versus inaction.
I’m not going to pretend that aspects of having PKD and aneurysms don’t suck. They suck hard. The blood pressure meds suck. The blood pressure meds I had to take while trying to conceive, during pregnancy and while breastfeeding sucked harder. The blood thinners I have to take infrequently suck even harder again. The surprise early birth of my daughter was terrifying. The MRI machine is a claustrophobe’s worst nightmare, and I have to slide headfirst into that tunnel every year. And the overwhelming, incapacitating days of pain I feel when a cyst ruptures? They suck the most. Super crazy big-time levels of sucking.
But when you play the comparison game, it all sounds so pathetic. These things are all so minor, so manageable, so NOTHING compared to not knowing what’s happening. Compared to finding out I have PKD later in life, when the damage is done and the only course of action left is to go on dialysis and pray for a new kidney.
I know about my PKD. I can manage it. I even have a friend who is adamant that she is all set to go when it’s time for a kidney transplant. I have an incredible team of doctors and specialists. In particular, my nephrologist is wonderful. No matter what his news or observation, I always leave his office feeling better. Calm. In control.
I know my body inside and out. My imperfect body. My imperfect yet perfectly capable body that has lived through almost 33 years, six major surgeries, two pregnancies and what is only the beginning of a lifetime of happiness and love. Only the beginning because we are ALL. OVER. THIS.
It’s Kidney Health Week next week. Go see your doctor. Get your blood pressure checked. Get your kidney function checked. Get your EVERYTHING checked. If you can’t remember the last time you saw your doctor, just go. GO. You might be nervous about something. But I believe that not knowing is worse than knowing. Knowledge brings power. Not power of the all-consuming, evil genius kind (MWAHAHA). Just power over your body, its limitations and your future actions.
So here’s some more knowledge for you, courtesy of Kidney Health Australia: every day, more than 56 Australians die from kidney-related disease. Most dialysis patients need treatment at least three days a week for five hours a day to stay healthy. 11,446 Australians are on dialysis. 1,087 Australians are waiting for a kidney transplant.
And there is no cure for kidney failure.
It’s Kidney Health Week (#KHW15) next week. Wear red. Support Kidney Health Australia (if you’re in a position to do so). Support anyone and everyone you know with a chronic kidney disease. It’s not a particularly sexy disease (for want of a better word), and it’s hard to get word out there. So help us spread it, if just for this week.
Do you have a kidney disease, or know someone who does? Do you have a story to share?
PKD and aneurysms sound scary. So pleased you know!
Love your outlook on it all.
Thanks for sharing!
Thanks Leanne. I’m so pleased I know too. x
I had never heard of PKD. I’m sorry to read that you have it but glad to know it’s under supervision and you’re doing well. I do have a friend on dialysis and it’s a very hard road for her.
Can I admit that dialysis scares me? I know this is a positive post, but it seriously scares me. But it’s also a long way off, and it’s something I’ll just have to face when it’s time.
Oh Em, that doesn’t sound like a prequel, that sounds like an epic saga! Thanks for sharing. #TeamIBOT
It’s definitely not an epic saga! It probably sounds like I’m facing uphill battles every day, but it’s not like that at all. Pleasure for sharing – thanks for reading.
Thanks for raising our awareness of this condition!
Pleasure – thanks for reading about it!
I don’t like that you have PKD but I love that you are all over this! Boom! I think you’re so right, as difficult as it might be, knowing makes it better. I’ve always thought that when it comes to illness, knowledge is power. My husband had a stroke last year, and although everything looks good, I’m pleased he’s on meds and that he’s being monitored. Your health is your wealth – don’t take chances with it. And yes, I’m with you on going to the doctor. Check, check and check again!
I’m sorry about your husband. I’m glad you’re all over it now. Agreed – health is wealth. Well said!
I really feel for you. My aunt has some form of kidney disease and lost a kidney soon after her second child was born. It’s amazing the research and treatment that has evolved since then. She is also on a lot of the medication you are on but refuses to give up her obsession with salt. Although she has cut down considerably over the years.
Thanks Raychael. It’s amazing the research and treatment that has evolved just since my diagnosis! Not just for kidneys, but for the aneurysms too – coils were brand new when I had my first surgery.
Salt, no no no no no! I remember telling my nephrologist early on that I was doing well with the salt, but that I just couldn’t give up Vegemite. He just stared at me for a second or 20, then said very calmly, but very firmly, “As of right now, you no longer eat Vegemite.” Okay. Understood. Done.
Great post and I LOVE your attitude. Very much an inspiration to others with chronic health issues – and those of us without who whinge about the smallest of things!
Thanks Deb. I find the word ‘inspiration’ a stretch, but if this post inspires anyone to check in with their doctor, then I’ll accept it gratefully. (And having this condition absolutely does NOT stop me from whinging about the smallest of things!)
It sucks that you have PKD but your attitude rocks. You are on top of it and are such a positive soul. It’s great you are sharing awareness too. I learned a lot from this. Take care hun okay? x
Thanks Jodi. I’m glad you learnt something. I will take care – you too x
My goodness I never knew this about you Em, what a big thing that is really but as you know forewarned is forearmed. My son has kidney issues, they were found in the womb but there’s a chance things will come right. Although he already has kidney damage, we are keeping a strict eye on it. I’d like to think if worst came to worst one of his siblings would give him one of theirs to him for Christmas! Great message and go you for spreading this important message. x
That sucks. Hugs to you and your son. But knowing is SO much better than not knowing, right? Siblings are the best donors for sure. My brother has offered, but his health isn’t 100% even without the (slight) chance that he might still have PKD so I’d rather not go there.
Great post! Admire and respect your positive outlook. I am 34 and i was diagnosed with membranous nephropathy (CKD) was i was 30. An unexpected surprise that i wish i hadnt received, however am thankful i am able to manage it and am in a far better position healthwise than many people. All the best!
Thanks for sharing your story, Aleisha. I really appreciate it. Glad you like the post, and all the best to you too!
Wow what an amazing story. I have pkd, my dad had it, my great aunty, my grand mother, two secomd cousins. Im 30 and put off findong out and i
3 years ago i accidently found out from having othet tests done.
No aneurysms yet, just trying to get blood pressure under control before thinking about pregnancy.
All the best to you.
Yes, there are aunts and uncles and cousins with it here too! Thanks for sharing, and thanks for your lovely comment on Facebook, too.
Good luck with the blood pressure control. The meds don’t suck THAT much. (Notice they were first on the sucky list? Because they suck the least.) All the best to you, too. x
I really admire your positive outlook on this, better to know and be prepared, so you are right, it could be a lot worse, but it still sucks.
Thanks Malinda. I figure that being grumpy or angry about it wouldn’t change my situation. It would just make me feel grumpy and angry! I’ve also had more than 12 years of living with the diagnosis, so that probably helps too 😉
Amazing & incredibly helpful post but this is about YOU, Em.. Can’t tell you how much I both admire & respect you for your honesty despite this chronic & life-changing condition. Each time I slide in the MRI.. Got to me.. As I had my first one last week (checking out my pancreas but all good phew) & I was ok inside but you hate it.. Oh just want to give you a hug! Does this Condition have any connection with your chocolate “giving up” .. Denyse x
Thank you Denyse. E-hug back at ya. There was no horrible disease-related discovery that prompted the chocolate ban. But it’s certainly related in that I want to be as healthy as possible, and eating a block of chocolate every day just isn’t healthy.
Thanks for sharing your story, I’m so glad you are on top of this. I will definitely talk to me doctor about this sooner rather than later. You’re very inspiring.
Thanks Laney. Glad it’s prompted a doctor visit. When’s the best time for a check-up? Anytime! And all the time. x
You look just a little bit cute in your red gear, Em.
It’s good to get an update on your condition. I’m constantly amazed at the health issues so many good people live with day to day. Your attitude is really inspiring. x
Thanks Bron. I know – it’s one of the things that’s held me back from writing about it. Because I know so many people struggle with their health daily, and why does this make me special?
The answer: it doesn’t. That’s WHY I need to write about it.
Holy shit, I had no idea this was even a thing! Thank you for sharing – love your sense of humour and positivity x
Thanks Hugzy. Appreciate that last bit especially. x
Wow! What an amazing and positive outlook you have on life……I was born with PKD, and Congenital Hepatic Fibrosis of the Liver. I am almost 31 years old. I had a Kidney Transplant when I was 14 (1998), my dad was the donor and then spent 7 months straight in hospital and ICU unit between 2009-2010 waiting for a compatible liver. Then at the end of 2012 I was experiencing frequent headaches for about a week and then woke one morning with double vision. With me being on top of my health I didn’t hesitate and went straight to my GP. An urgent MRI revealed multiple intracranial aneurysms behind both eyes. I have had 3-4 surgeries to stent the right side and they are looking at maybe starting to stent the right side, later this year as they are stable and monitored regularly with angiograms. I understand completely what you have gone through and still have to face. I will eventually need another Kidney Transplant further down the track in a few years, but my dad’s kidney has been so good and I am so blessed he did such an amazing thing for me. I would love to hear from you, I live in Sydney
Thanks Lisa. Thank you so much for your words. I don’t know where to start with my response so I’ll just jump straight to the end – I will definitely be in touch by email. x
Thanks Emily, I would love an email from you and would love to keep in touch with you and be able to discuss stuff with you in relation to many health similarities and it helps to be able talk to someone and keep in touch with someone who understands. I have always been so positive about my condition and am so open and honest about it and have never felt shy or ashamed of telling everyone what I have been through. So ask me anything you want in the email you end up sending me,
You are truly an inspiration, I look so forward to hearing from you via email soon.
Lisa xoxo
Amazing story Em. I love your attitude.
Thanks so much Nicole x
Oh my Gosh! I had no idea you had kidney issues. What a long and stressful journey you’ve been through so far. Excuse my ignorance, but could you get a new kidney now, one without cysts or would that one grow cysts too? I really feel for you. Thanks for sharing. It is a really important story to tell. And look at you totally kicking PKD’s butt having two kids!! Hugs xx
Thanks Renee! Not ignorance at all – I thought the same thing when I was first diagnosed. Even though my kidneys suck at being kidneys (to borrow John Green’s phrasing), because they’re mine, they still do a better job than any implanted healthy ones would. For now. I’d also risk rejection of the new kidney, and donated organs have a ‘shelf life’ (for want of a better term). So it’s better to wait until needed. That and my kidneys don’t suck too much at being kidneys just yet. The blood pressure and aneurysms aren’t fun, but they’re problems I’ll always have to deal with anyway. Does all this make sense? Hope so! x
What an amazing attitude you have…I like it! Of course you must have your fair share of ‘what ifs’ and fear, but look at you kicking goals and educating!
Thanks Jenni. What a lovely comment. Yep, it’s scary, but knowing that I could be living with all these things and not even know about it is scarier. x
OH wow, I had no idea about this condition or that you have it. Thanks for sharing x