Just Frances

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Bob and Dave’s 2014 review

This entry was posted on Thursday, September 18th, 2014 by Frances Ryan.
Tags: pkd, health, happy, fear, faith, ego, celebrations

Today was Bob and Dave’s annual check-up, to determine just how well they’re coping with life.

Bob and Dave, if you don’t know, are my kidneys. They suffer from polycystic kidney disease (PKD) and have lived their entire lives working really hard to keep ahead of the disease.

It’s always a little frightening when I go to these annual check-ups because I know that one day, I’ll be told I need to be seen more regularly—which will be a sign that Bob and Dave are beginning to lose the battle.

In fact, it’s just frightening enough that I begin to feel stressed about my appointments a week or so beforehand. Then I sit in the waiting room trying really, really hard not to feel sorry for myself; trying not to cry.

Like last year, I’m aware that I’ve been under a bit of stress lately. I’m also aware that my diet and exercise regimes haven’t been as good as I’d like them to be. And those things make me worry that Bob and Dave are being unduly worked to make up for my poor self-care. (Though recognising I’m actually really good to myself, compared to many people.)

But also like last year, I have been pleasantly pleased with today’s check-up.

Once again, my blood pressure, creatinine, and GFR numbers are all well within normal ranges. In fact—I was told that my numbers all around are presenting better than many non-PKD patients in my age range.

I was given high praise for the way I’m taking care of myself. I was also told that I had “impressively strong, firm abdominal muscles” for a woman half my age—let alone for a 40-year-old woman. (I was told that’s not surprising, given the amount of running I do.)

The two “negative” take-aways from today were 1) that I should stop worrying about having a large “PKD belly” because I am the only person that will notice, given my current size, and 2) I should start thinking about limiting my protein a bit.

The first take-away was given because my doctor felt that I was worried about my kidneys being visibly large when they’re not. The second was because she fears that as time goes by, I will need to watch my protein more—so I should start early. (She noted that I needed to make sure I was getting enough nutrients for my running though.)

I’m being referred to a nephrologist closer to home now, so may have an extra check-up this year because of that. But otherwise, I’ve been told to go away and live my life. After all, despite having PKD, I am still a healthy woman!

Thanks again, Bob and Dave, for all of your hard work! I know you struggle under the weight of all those cysts, but the way you carry on despite them makes me very happy!

* The picture is meant to be a kidney tree and was drawn as an illustration for this PKD post in 2011. It is also now used as a “bag for life” design for the UK’s PKD Charity.

Comments

Great news!  I’d love to know your creatine and GFR, but that’s not something to put out on social media.  And your doctor is right…start limiting the protein now and it’s going to be easier when you need to limit.

Keep up the good work…and keep on running!

PS I love my PKD bag, but sadly I’ve had no comments on it yet.

by Mom at 8:12pm (GMT) on September 18th, 2014

That is awesome, Frances!!!! So good to hear. I, too, am dreading the day when I hear that you, or another niece or nephew, (or grand niece or nephew) is on the road to a transplant. Even tho it is a great fix (for the most part), there are always issues and I don’t want anyone else to have to go thru this.

As for the limiting of protein, yes, start early, but be careful. You are very smart and healthy, but I would ask the Dr who told you that to give you numbers. Just to say ‘limit protein’ does not give you enough information. Should you cut 10% or 50% of what you are currently consuming? I actually got the numbers and saw a dietitian to help me (I was already pretty far along, I think already on the list). Anyway, you need to know the numbers before you can figure out what to eat. And be sure to eat the most high quality protein you can, rather than ‘waste’ it on low quality stuff. Good luck with it. I know you will rock it, as always.

As for my kidney tree bag, I use it for my yarn hangers. It is the perfect size to have the hangers inside and not sticking out, as well as yarn, tape, clippers, etc. I always point it out to people and tell them how my niece did the art and how the whole kidneys don’t grow on trees, but we all have a spare. I absolutely LOVE the bag. thanks again.

Love, Any Elizabeth

by Ant Elizabeth at 10:23pm (GMT) on September 18th, 2014

Mum - I’ll give you the numbers next time we speak. (Which we should do soon, now that you’re home from your trip.)

Ant E - I was given general protein targets but not told to actually limit my intake just yet. Because my numbers are all normal, there’s no need to have a reduced protein intake (especially as I am quite active) but I was advised to start *thinking* about my intake and to try not to overload.

So, really, the idea is to limit to a “normal” intake as opposed to a high-protein diet.

I don’t have the numbers in front of me just now, but I am normally within the right range. My problem - and what the doctor wants me to start thinking about - is that I go on binges where I eat a *lot* of steak and high-protein foods for 2-3 weeks on end. That’s where she wants me to cut back - the extreme overloads.

But when I’m referred to a local kidney doctor, I have been told to request a meeting with a kidney nutritional nurse to discuss long-term goals. The big worry is that I need to manage the intake for distance running *and* PKD all at once!

Glad you both enjoy the PKD bags!!

xx

by Just Frances at 1:46pm (GMT) on September 20th, 2014

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