May 16, 2017 by Leah
I had that second opinion appointment at OHSU last month. The nephrologist there told me several helpful things that I had already heard, but since it was a second opinion, this was actually reassuring. Things he said included: 1. I didn’t cause this, 2. There is not a darn thing I can do to reverse this – no diet, no medication, no alternative medicine, 3. I am more compliant than the vast majority of CKD patients, in that I take my blood pressure meds as prescribed, monitor my blood pressure, follow a low-sodium and low-potassium diet as discussed with my dietitian, and get exercise and sleep to boot. While this will all help preserve my long-term health, we hope, there are no promises that any of it will help my CKD.
And, indeed, it is not. As of a couple of weeks ago, my GFR was 23. The lowest it has ever been, during the time I was so sick after having my baby last fall, was 22. My local nephrologist (who was actually delighted I’d gotten a second opinion) told me that he’s had patients hang on in my situation for 3-4 years before needing to go to dialysis or a transplant, but the way things are going, I don’t think that’s going to be me.
I started Enalapril, the ACE inhibitor that I was so excited about, and while my low blood pressures are lower than ever, my highs (in the evening) are about the same, even though I’m taking the Enalapril between my afternoon and evening doses of Labetalol in order to maximize the metabolic rates for each of those drugs for my benefit. ACE inhibitors are only particularly helpful for patients who are spilling a lot of protein in their urine or compromised by cardiovascular disease, neither of which describe me. I’m still nursing and the baby is fine, so that’s not a concern. I’ll get more bloodwork done in two weeks to see how the medication is affecting my kidney function.
I’m getting more symptomatic, and am having a lot of burning in my shoulders and arm muscles and numbness and tingling in my arms and hands. This makes it hard for me to carry my little daughters for any length of time, which is pretty awful on a number of levels. I feel really guilty for pushing the baby around in her car seat stroller all the time and am pretty sure I’m stunting her development by not holding her enough. I may have mentioned I dropped my bow during rehearsals for my last concert – apparently this can all be a symptom of CKD as toxins build up in my bloodstream. So can the brain fog that is turning me into a terrible driver and making me unable to concentrate on reading, which is unfortunate since I drive all the time and just got invited to join a book club (I have wanted to join a book club for SO LONG). On top of that, I have a sinus infection, but after living with it for over a week I finally braved Urgent Care today and got some antibiotics.
Doctor: Wow, your kidneys are really shot.
Her: What happened there?
Me: Preeclampsia. Maybe some post-surgical blood loss and pressure drops.
Her: That’s really bad. I’m sorry.
Me: Yup. Also, I’m breastfeeding. Good luck with that.
Her: Oh, I’ll find you something.
And she did, so there’s that. But it’s a quarter of the normal dose I’d get due to kidney failure, so I will continue on with my rounds of saline, steam, Flonase, and trying to sleep with a hot water bottle on my face. It’s validating that every medical professional who hears about my situation is generally taken aback, at best, but it also makes me feel kind of heroic for just charging forward and doing all the same stuff I do all the time.
I also joined a Facebook support group for CKD and it has been eye-opening. And depressing. Apparently people just decide not to do dialysis or pursue a transplant, which is certainly their prerogative, but, like I said, depressing. (Although CKD can make you legitimately depressed.) And then half the people on there are “caretakers,” aka wives, who carefully monitor their husbands’ dietary requirements and cook all their meals, clean for them, let them nap all the damn time, etc. etc. Of course there are situations where this would be appropriate, and I am in better general health than most kidney patients, but good grief, no one even comes to my appointments with me except for my three small children. Fucking patriarchy. Ugh.
Maybe I need to leave the Facebook support group, since that plus John Oliver inspired me to look up, in detail, the mechanics and pros and cons of the various types of “treatments” (dialysis vs. transplant) and they all sound horrible, although obviously a transplant would be amazing and the best thing, since receiving a kidney transplant before one needs dialysis increases one’s life expectancy by 10-15 years. But sometimes stuff happens and you have to wait, or the new kidney doesn’t work right away, and you need dialysis, and then you have to decide between vascular surgery and repeated needle sticks in order for your blood to be removed, cleaned, and replaced for hemodialysis or getting a permanent catheter in your abdomen and having 2-3 liters of fluid pumped in and out of said abdomen several times over the course of a day for peritoneal dialysis. You can’t swim or take baths with a catheter and you have to keep your treatment room at home super sterile (hah!) but you’d need to find daycare and basically never travel to get hemodialysis. (Yes, I know there are options, and yes, I’m simplifying.) And then antirejection drugs after a transplant can make you gain weight, get acne, and grow facial hair (fine, except for the gaining weight part, because if your BMI gets too high you won’t be eligible for another transplant in the future unless you manage to lose weight while continuing on the antirejection drugs). There is just so much to worry about right now, and so much uncertainty about when any of this stuff might happen. I think 6 months to 3-4 years is a pretty reasonable timeline for when I’ll be eligible for a transplant, and to get that ball rolling I’ll need to be referred to a transplant center, all of which are 3 or more hours away, and only then can I start begging for kidneys from people who love me (fun conversation).
There’s never a dull moment around here.