My Two Gallon Habit

So this happened today. Despite being on Jynarque for over a year. Despite increasing the dosage to 90/30. Despite watching my sodium, drinking gallons of water and losing weight. My creatinine levels continue to trend upwards and my eGFR continues to trend down. It's now at 21. Big sigh. Discussions are underway to determine dialysis modality and whether I can do it at home. A fistula consult with the surgeon has been ordered. And I still wait for the transplant evaluation with Mayo (it was rescheduled due to Covid). So if you know anyone who would be interested in helping out a Type O girl with a donated kidney, please send them my way. Take care.

I looked at my phone messages on Monday night and was excited to find a call from the Mayo Clinic. Would they tell me that I had to wait for further deterioration before I could be evaluated for transplant? Or would they tell me to make the drive to Rochester to go through a battery of tests and meetings? It turned out to be the latter. Yay! They're going to evaluate me for transplant in April! Wait a minute. They're going to evaluate me for transplant... Crap. As they say in the movies (?), shit's getting real. I'm trying to stay positive, telling myself that this way I'll be able to get my name on the transplant list as soon as my eGFR hits 20. I'll be able to maximize my time on the list. But every so often, the positivity slips and the fear and anxiety appear. And the questions. All the questions... Will I be able to keep working? Will I be able to afford this? How will this affect my retirement? Will I be able to retire early? How will I pay

At my last appointment, the nephrologist actually offered to give me a referral for transplant. And then a week later I got THIS in the mail from my insurance company. Crap! It's getting real now. If something like that doesn't take the wind out of your sails, I don't know what will. Granted I had let my doctor know a couple of months ago that I wanted to be screened and ready to go as soon as my eGFR hit 20. Did I think it would be this year? No. My estimates were three years from now. Yet the combination of the four point eGFR drop + the transplant referral leads me to believe that my DOCTOR believes I should hit 20 within the year. I don't think I'm going to be able to last until the artificial kidney comes out. :-(

When I first went on Jynarque I completely nerded out and calculated my approximate rate of decline based on my height adjusted total kidney volume and the ADPKD Classification tool published by the Mayo Clinic. Based on that information, I calculated that my eGFR levels would stabilize at 28 until 2021 when I would see a 4 point drop. With the approximate 35% reduction in the decline rate afforded by taking Tolvaptan, I would have expected to be somewhere between 26.3 and 28.1 right now (I told you I nerded out). Based on THAT rate of decline, I anticipated needing dialysis in about eight years when I projected I'd reach 7.1 to 8.8 eGFR. Oops! Right now I'm at an eGFR 24, a full year before my projections. Best laid plans and all that, right? Both my doctor and I are stumped. Is Jynarque working for me or not? At a cost (to the insurance company) of $10,000 a month, I don't want to be taking a drug if it has no effect. But we both acknowledge that it's possib

Lord knows I've delayed this as long as I could. But it's time. Time to get in shape and to lose weight. Did you know that centers have weight/BMI limits as part of their transplant qualifications? They do.  In some instances, they'll require weight loss before they'll add you to the active transplant list. And if you attempt to lose weight (or not) and don't, they may even recommend bariatric surgery. That seems a bit extreme... to have an invasive surgery so you can have another invasive surgery. Additionally, there's some controversy about how much weight to lose. Studies show that heavier dialysis patients have better transplant outcomes than dialysis patients with lower body weights. So what's the happy medium? How do you satisfy the transplant centers while assuring that your transplant odds are as high as they can be? Honestly, I think it's just using some common sense and making an honest effort. My goal i

Both of my brothers have ADPKD as well. The odds of a PKD parent having a child with PKD are one in two. The odds of having two with PKD are one in four, or 25%. Three? a 12.5% chance. We "beat the odds" (i.e. the PKD is strong in this line). Thankfully - for me - my PKD is less aggressive (although still not good). While I have a bit of a "PKD belly", it's not excessive. And instead of true pain, I only suffer from discomfort. Not so for my little brother. Despite being nine years younger, his kidneys are MUCH larger. You can actually see the outline of them on his belly. And instead of discomfort, he experiences true pain. So much so that he recently went in for surgery to have the size of some of his larger cysts reduced. The surgery is called Percutaneous (through the skin) Sclerotherapy and is an outpatient procedure. Larger cysts are identified through a CT scan or MRI, during which the doctor inserts a needle to aspirate (drain) and then s