Just Frances

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All entries tagged with “pkd”

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    Frustrations of the chronically ill - Jul 17th, 2018
    I have been thinking about illness a lot lately. Especially about the frustrations of being chronically ill. Even more about the frustrations of being chronically ill, yet also being relatively healthy. And, of course, I have been thinking about how being ill and healthy at (almost) the same time is, at times, soul-destroying. [more...]

    Tolvaptan tales: A one-year review - May 14th, 2018
    This past weekend marked one year since I started taking tolvaptan. In that year, I have learned quite a bit about how to manage the medication as I go about my day-to-day life. This post is intended to share my experiences for my own personal reflections, but I hope that it will serve as an information starting point for others. However, please remember that your experiences may vary. [more...]

    My PKD liver (or PKD-associated PLD) - Mar 12th, 2018
    Regular readers will know that I have polycystic kidney disease (PKD). What they might not know is that I also have PKD-associated PLD (that’s polycystic liver disease). In fact, 75-90% of people with PKD also have PKD-associated PLD. [more...]

    PKD information and support day: A recap - Feb 15th, 2018
    Last weekend, I attended the ADPKD Information & Support Conference in Edinburgh. The event was hosted by Professor Neil Turner and the PKD Charity UK, supported by the Edinburgh and Lothian Health Foundation Renal Endowment Fund. The event marked the 10th year since the first information day was held in Edinburgh. The post to follow is a recap of my experiences and learnings from the day. (With links to further information, should you be interested.) [more...]

    2017: Undone, indeed - Dec 31st, 2017
    2017 is over. It was meant to be my “year of doing” but, alas, it would seem that it was a year undone. Undone, indeed*. [more...]

    Tolvaptan tales: A four-month reflection - Sep 16th, 2017
    It has been about four months since I started taking tolvaptan, which is a great opportunity for an update. As with the post I shared about my experiences in the first month, the information shared here is meant as an information starting point. It is not medical advice; it is simply one woman’s experiences. Your own experiences may vary. [more...]

    Tolvaptan tales: The beginning - Jun 10th, 2017
    Last month I shared that I was getting ready to start a new medication called tolvaptan. The drug is meant to slow the progression of my kidney disease (polycystic kidney disease, or PKD) which is the best I can hope for as there is no cure for it (yet). I struggled to find any good, in-depth reviews before starting the drug, so I decided to share my experiences here. [more...]

    Talkin’ tolvaptan - May 11th, 2017
    Tomorrow morning, I will start taking a new drug called tolvaptan, which is meant to slow the progression of my kidney disease. When I was first recommended for the drug, I went in search of some user experiences online. But my search didn’t bring up any blog posts or laypersons’ stories and testimonials. So I’ve decided I would get my experiences out there for the next person Googling about tolvaptan and PKD! I will try to share a couple (maybe a few) progress updates, too. All posts related to my experience with tolvaptan will be tagged as such, in addition to my general PKD tag. [more...]

    Dating disclosures - Jan 2nd, 2017
    Since (a few failed attempts at) re-entering the dating world post-widowhood, I have learned that there are many struggles to dating in the modern era. From the drama of online dating to the drama of just dating at all, I have learned a lot about how to navigate the dating world as a “young widow”. But I am realising that there are still things I have yet to figure out. (And maybe I’ll never figure them out!) [more...]

    Normal kidneys - Apr 9th, 2016
    I had my annual kidney check-up a couple of days ago to see how Bob and Dave are coping with their inherited polycystic kidney disease. And I am very pleased to say that my kidneys are working well. As I’ve said before, I am always a bit nervous when I go for these check-ups because I know that it won’t be like this forever; I know that one day I will be told Bob and Dave are too unwell to keep the rest of me well. [more...]

    Saving the best for last! - Sep 28th, 2015
    I ran my last Loch Ness Marathon yesterday. (Maybe.) And I accomplished a PB whilst doing it—which was totally unexpected. Even better, I am nowhere near as sore as I was the day after my first (and slowest) Loch Ness back in 2011. [more...]

    My PKD story - Mar 11th, 2015
    As part of World Kidney Day and National Kidney Month, the PKD Foundation has asked people to share their PKD story. This is mine. [more...]

    Bob and Dave’s 2014 review - Sep 18th, 2014
    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. [more...]

    Running with PKD - Jul 16th, 2014
    Several times a week, people find my blog by searching terms related to running with PKD, which prompted me to do a wee Google search to see what others have written on the subject. I was surprised to see so little on the topic, so I thought I’d take the opportunity to talk about it. After all, I am a runner with PKD so I have a little something to add to the (limited) conversation. [more...]

    Just four years - Feb 15th, 2014
    Just Frances is four years old. Wow! Can you believe that I’ve been spewing this utter nonsense for that long? And if you thought I might be nearing the end of rubbish things to talk about, you’re wrong. (No apologies. If you don’t like it, you can just stop reading!) [more...]

    Bob & Dave: Just normal - Aug 22nd, 2013
    Today was my annual check-up for my kidneys, Bob and Dave. I’ve been really nervous about it because I know that the last year hasn’t been my greatest when it comes to nutrition and exercise. And with the extreme stress I’ve been under the last few months, I was certain that today would be filled with bad—or at least not good—news. [more...]

    When I close my eyes - Aug 12th, 2013
    Sometimes I like to close my eyes and imagine the life I want. It’s by no means an extravagant life—it doesn’t even include winning the lottery—but it’s the life I dream of having. [more...]

    A kidney tree - May 13th, 2013
    A couple of years ago, I drew a silly little ‘kidney tree’ to illustrate a story about my kidneys, Bob and Dave. It humoured me, but I didn’t think that anyone else would think much of it. It was, after all, just a silly little drawing. [more...]

    A disappointing time - Apr 28th, 2013
    I have just completed my slowest-ever 10K race and I don’t know how I feel about that. I am embarrassed and humiliated—and very angry with myself. But I don’t know if I should feel that way or if, instead, I should feel pleased that I crossed the finish line at all. [more...]

    A life I value - Feb 24th, 2013
    Yesterday’s post seems to have created some interesting—and unexpected—feedback, so I thought I’d take the time to talk about it some more. [more...]

    My social worth - Feb 23rd, 2013
    Since becoming a widow, I’ve given a lot of thought about the value of my life; the purpose and the meaning of it. I’ve wondered why I’m here in this world that seems so filled with pain. I’ve wondered if I want to continue living in this world into old age. [more...]

    My PKD belly [?] - Feb 10th, 2013
    Today I want to talk about my belly; my slightly-larger-than-it-should-be belly. And, in a way, I want to talk about my crazy brain and its way of justifying things that may (or may not) be right or wrong. [more...]

    A stranger saved my life - Jan 17th, 2013
    One day, a stranger saved my life. Actually, it was probably more than one stranger and it probably happened over a series of days. And the actual day my life was saved was a different day all together. [more...]

    Free drugs - Feb 17th, 2012
    I’m not new to the Scottish National Health Services (NHS), having had my first experience with them about 10 years ago, but I guess that my American upbringing is just so overpowering that I’m still taken aback from time-to-time with the strangeness of socialised health care. [more...]

    Why run? - Oct 1st, 2011
    I’m running my first—and last—ever marathon in the morning. I’m pretty excited about it, but at the same time I’m rather dreading it. You see, I don’t actually enjoying running exceedingly long distances. 10Ks and 12Ks are fun. [more...]

    The trouble with Bob and Dave - Mar 19th, 2011
    Bob and Dave are my kidneys. Bob to my left; Dave to my right. Both are riddled with cysts and are considerably larger than normal kidneys. Bob is nearly double the average kidney size; Dave is a big’un, too, though slightly smaller than Bob. [more...]

    Friday eve - Mar 4th, 2011
    Friday eve is here and I’m celebrating with a cold bottle of Pyramid Brewery’s Haywire Hefeweizen and a bowl of pretzels. [more...]

    100 random things - Feb 17th, 2011
    My friend posted a list of 100 random things her daughter wrote about herself out of boredom and I thought I’d give it a shot and create my own list. So, if you’re not already bored, this should help… [more...]

    The gift of life - Jul 29th, 2010
    My aunt received a new(ish) kidney today, courtesy of a very dear friend of the family. (We’ve always said that Jeanne was part of the family—and now she really and truly is!) My aunt was the third family member to receive a kidney transplant. [more...]

    Chili cheese dogs - Jul 20th, 2010
    I love food. Expensive food, cheap food, homemade food, and overly-processed food-like substances. The last is a group that I don’t get to enjoy often, partly because having kidney disease means I need to watch my sodium intake and partly because I’m too cheap to buy a lot of processed food. [more...]