It’s Kidney Health Week next week. And this time last year, I wrote a post about my kidney health journey so far.
I’m not going to say all the same things again. Instead, I’m going to write about what it feels like to know that your kidneys will fail you one day.
It might surprise you. Because here goes: it’s fine.
It’s fine. It’s really fine.
It’s a little weird. I’m not going to lie. But it’s been part of my life for so long now that it just… well, it just is. It is what it is.
I have polycystic kidney disease, and one day, my kidneys will fail. And knowing about it is oh-so-much better than not knowing about it would be. Of that I have no doubt.
I had an appointment with my nephrologist recently. I came home, and my friend looked at me and asked how the appointment went. I replied with a thumbs up. “All good! Gold star!”
I wasn’t ready for her reaction. She sprang up, with tears in her eyes, and launched at me. “Really?! That’s so good! I can’t believe it’s all over! Oh, Em!” Cue all the hugs.
And I had to clarify. Gold star doesn’t mean all clear.
Gold star means we’re managing it well. Gold star means we’ve slowed the deterioration. Gold star means my blood pressure is looking good, my blood tests were clear, and the signs that my kidneys are worsening did not reach the levels my nephrologist had predicted at my last appointment.
But they’re still getting worse. Because that’s how it works.
I feel great. I really do. I’m still young (I can hear the young, beautiful creatures of the world giggling at that, but it’s all relative). I’m still fit and, apart from this pesky little ‘my-kidneys-don’t-always-work-properly-and-I-have-cranial-aneurysms‘ problem, I’m healthy. Very healthy, in fact, because I’m doing all I can to manage, if not negate, the pesky little ‘my-kidneys-don’t-always-work-properly-and-I-have-cranial-aneurysms’ problem.
But not everyone can say the same.
#IKidneyCheck because that’s the best way to manage my polycystic kidney disease. #IKidneyCheck because the health of my kidneys affects more than just my kidneys. It affects my blood pressure. It affects my head. It affects my life, and the lives of those nearest and dearest to me.
And you should kidney check, too. Here comes some begging. Oh boy. Hold on to something.
Please – PLEASE – if you have any concerns about your health – ANY CONCERNS – whether it’s about your kidneys, your heart, your head, your toes or just a vague feeling that’s something’s not quite right – go and see a doctor.
Please – PLEASE – if you or anyone in your family has a history of kidney disease, stroke, high blood pressure or heart problems – or if you have any more of these risk factors – go and see a doctor.
Please – PLEASE – if you haven’t seen a doctor for a while – if you can’t remember the last time you had an appointment – go and see a doctor. Book an appointment right now. I’ll wait here.
Done? Good.
It’s Kidney Health Week next week. Visit your doctor. Read up about the fantastic work of Kidney Health Australia, and make a donation if you’re able. Wear red. Follow the #KHW16 hashtag on social media.
And take care of you.
Have you visited the doctor recently? How is your kidney health?
Gosh you just made me realise I have a family history of strokes, heart attack, aneurysms, high blood pressure, ECK. Is it better knowing or not knowing? xx
It definitely is. I don’t even think about it most of the time. And I’m making decisions to prolong the life of my kidneys. Definitely worth knowing. x
Thanks for sharing Em. I see my GP once a year for general check ups and any referrals – I owe it to my kids, husbo, family and friends, not to mention myself, to take great care of me! And of course, I expect (and encourage) the same of them. x
Great approach. Thanks V
Well done on the Gold Star. Hope the gold stars continue for as long as possible.
As I type this my hubby is sitting nearby with a heart monitor checker thing on. Not because he has a heart problem or is sick … but because he wants to stay ahead of the game and not get any surprises so this is part of his annual check-ups. He’s up’ed the ante now that he’s 50.
I need to book in my annual check up so I too can stay ahead of the game.
Thank you. Fingers crossed on gold star continuation. And I love your husband’s approach. Better to be forewarned.
I only just learnt on the weekend that if you have a kidney transplant, it fails at some point (ie they only have a limited ‘life’) so you may have 2 or 3 in your life. I thought it was done once and fixed. Who knew? Aren’t they amazing, Drs?
Yes, so it’s best to live with your actual kidneys for as long as possible! I’m occasionally asked why I just don’t have a transplant now so it’s done. Thanks for sharing. And yes, doctors are most definitely amazing.
I’m glad you’re managing it so well!
Thanks Amy!
So glad about the gold star – that’s the best you can get under the circumstances. Thanks for the sage advice too – when it comes to our health, if something doesn’t feel right, it probably isn’t and it’s always better to be safe than sorry and pop on over to the doctor. Because you’re worth it!
YES. Take that, L’oreal. Our health is worth more than your beauty products!
Social conversations are really not geared to cope with permanent conditions! 🙂 I’m happy that I’m finally on a wait list for an ENT to look at what I believe have been life-long sinus issues. I’m grateful to no end that my husband’s new GP follows through on tests and we’ve made more progress this year than in the past 5 years combined. Go medicine!!!!
Very true! And fantastic – I get frustrated by mild hayfever so can’t imagine what life-long sinus issues are like to deal with! Chookas for your appointment.
Well done on the Gold Star! And I think you’re right – I probably should get a check up. For no other reason than I haven’t had one in forever. And despite my fabulous athletic *cough* lifestyle, I agree that it’s better to be in the know about your total health “score” to protect your wellbeing..
Yes, my lifestyle has also been fabulously athletic *cough* in recent months!
Wonderful post Em. And I love your positivity towards something others could allow get themselves down.
My dad had heart trouble for all of his adult life and for about 30yrs it was ‘until he gets bad enough’. The good thing for us was that he was being monitored. We knew at some point he’d need ‘something’ (which ended up being a transplant) but you’re right – having the right medical care was essential.
Thanks Deb. And don’t worry. I have plenty of the down moments. But overall, they don’t achieve anything. So I give myself permission to wallow for a while, and then I get on with it.
Wow Em! You come across in your writing as such an amazing, strong, positive woman (which you are all of those things!) That it would never have occurred to me that you were fighting health battles!
It is so totally true when they say you never know what battle someone else is fighting! Go you as you have replied to Deb down moments don’t achieve much but they are important to acknowledge so they can float out.
Big hugs xoxo
Thank you – what a lovely comment. I think a lot of people are fighting health battles and, for the most part, we have no idea. x
Great post! It’s reminded me that I have a couple of general health referrals sitting in my handbag which the doctor has recommended that I haven’t had time to follow up. Will now get on to that next week!
I’m glad you’ve been prompted to action! Good luck with your appointments.
I saw the Kidney Week display in the windows at the local chemist here today and thought “oh, here’s some pics Em could use..) I congratulate you on your outlook. I know you say you also have some down times and I think that’s pretty good too. Gee, who can be ‘up’ and positive 24/7. Nevertheless as you say, be grateful for health and regular check ups. You are living your life to the full and I admire you for that. My late mum used to say ‘if you’ve got your health, you’ve got everything” and she was right. She only became unwell after her 80th bday.
From time to time I am the biggest whinger about some minor emotional health related stuff like IBS and then I look at the overall physical health I have…and sure I remain overweight despite losing 20 kg over 2.5 years (not a diet…called anxiety I think) but all the tests I have and meds I take say at 66 I am doing very well. I am glad you write about this to keep everyone up to speed, Em
Whinge away, Denyse. All health problems are unfun, and I know I certainly complained about comparatively ‘minor’ things pre-PKD diagnosis. In fact, I still do!
I love your approach Em and kudos for getting the word out. Here’s to more gold stars xx
GOLD STARS! GOLD STARS! Thanks, Tash.
Thank you for sharing. Sorry to hear of your struggles but so glad you are doing well.
My 20yr old niece discovered she has kidney issues and high blood pressure – it’s being monitored by specialists now with meds etc.
I’m so glad they’re onto it so early! Thanks for sharing, Trish.
Eeeep, thanks for the kick up the butt to get regular health checks etc. xx
KICK! KICK! You’re welcome for the butt-kicking. KICK!
Thank you for writing this and sharing your story. My liver isn’t functioning as well as it could and I need to monitor it twice a year or so with blood tests. Not much fun.
Not much fun at all! I’m a regular at pathology, too. The nurse knows my kids so well! Glad you’re monitoring it. x