My Two Gallon Habit

Oops! I advocated for myself again. After getting the results from my latest CBC (Complete Blood Count), my doctor put me on daily Vitamin D-3 to increase levels but did not recommend iron supplementation for (what I consider) borderline anemia. I was glad to hear low Vitamin D might be adding to increased fatigue but I still wondered... I have a history of low Ferritin levels, despite sufficient RBC/hemoglobin counts. So... I made an appointment with an independent lab and had them check my iron levels. Results? My Ferritin level is at 51, well within the 'normal' range of 100-232. Still, I wondered... So I did further research. My low Ferritin level was originally discovered when I was diagnosed with Restless Leg Syndrome (but I may actually have Periodic Limb Movement Disorder). So I looked up literature regarding recommended Ferritin levels given RLS/PLMD. Huh. Treatment recommendations are that Ferritin be no lower than 75 for people with RLS/PLMD. Bingo! ...

Move over Tolvaptan/Jynarque, there may be a new sheriff in town. On 05 June 2019 Texas-based Reata Pharmaceutical received orphan drug status from the FDA for Bardoxolone Methyl (aka Bardoxolone). So what does it mean if a drug is granted orphan status? It means that even though there are fewer than 200,000 people in the United States with the disease at any given time, the federal government has acknowledged the need for medical innovation to address the condition. Companies/drugs given this status receive certain development incentives such as tax credits for clinical testing, exemption from prescription drug user fees (used to fund new drug approval processes) and the ability to market the drug exclusively for seven years. I guess that takes the sting out of having a limited market. It may also explain why drugs such as Tolvaptan (also with orphan drug status) are so flippin' expensive! It's hard to recoup an investment when your upside is limited. So what's the...

I'm ten days shy of having been on Jynarque/Tolvaptan for 12 weeks. Three months. A quarter of a year. So far so good as far as the side effects go. Yes. I drink a TON of water. Yes. I go to the bathroom A LOT. [A piece of advice. When you pee as much as us Tolvaptaneers do, you learn to dab instead of wipe. Just sayin'...]. No. My liver function has not deteriorated. My eGFR is solidly in Stage 4 at 28 but my bloodwork is stellar (no protein leakage for this girl). Some people say that their flank pain decreases when on Tolvaptan. I can't go along with that. Instead... I experience low grade flank pain (along the waist, under my ribs on my front side) most of the time. It's not enough to actually classify it as pain; it's an almost constant feeling of discomfort. I get winded and out of breath more easily. At work we do walking statuses and i have one speed... GO! I've found that it's hard to walk and talk. And I've found that I have to re...

After today's earlier post on becoming "that person" - the one who does nothing but list off a litany of aches, pains and meds - a lightbulb finally went off. Truth be told it was as I was posting the accompanying picture to Facebook. THIS is how I'm living my life with ADPKD! Yes, I'm living with all the aches, pains and meds. But that doesn't define me. I still do STUFF! I've been fortunate to have some downtime from work - a stay-cation of sorts. This is my favorite way of spending my time right now. It gives me time to relax, read, get caught up on chores and CREATE! It doesn't matter what kind of creation it is - cooking an actual meal (and sitting at the table to eat it), painting a room, gardening, fixing something that's broken or, in this case, building a very basic potting bench. It may not be pretty. It may not even be level/square. But I built it BY MYSELF, without plans, using scrap lumber I had collecting dust in my gara...

I remember watching sit-coms where the older people were stereotyped as talking about nothing other than their current (and past) aches and pains. I used to laugh and think 'how ridiculous'. No more. I've become that person... and I'm not even that old! It's so hard when something totally consumes you, whether it be a new hobby, a new beau or a progressing disease. Your mind becomes consumed. And when people ask a single innocent question, it seems like the dam bursts and suddenly this single track of thoughts come gushing out. TMI! Too much information! So now the question is... how do i balance who I am WITHOUT the disease with the person I am WITH the disease?!? I don't want to hide anything, but do people really need to know the details of persistent flank pain, the timing difficulties I face due to medications that interact, blood test results and the gut-wrenching, paralyzing FEAR that I experience when I let myself think about things for too lon...

Years ago during long car rides I would feel a dull crampy ache right along my waist on the left side. I would stretch in my seat, thinking that I'd been immobile for too long. Sometimes the ache would go away, other times it would seem to persist. Luckily it wasn't painful. It was actually... just annoying. At that point in my life, I knew that I had Polycystic Kidney Disease - I would eventually find out that pretty much everyone on my mother's side of the family tree had it as well - but I never really connected that sporadic driving discomfort with the disease. 1 + 1 = 2 I finally put it together. That infrequent achy feeling is now a persistent resident in my life. I wake up with it. I sit with it. I walk with it. I drive with it. I still try to stretch it away but I know it's futile. This, my friends, is PKD flank pain. Sources say that this chronic ache/pain can be caused by: the outer lining of the kidney being stretched (i.e. cysts are growing) ...

I've been on the increased dose of Tolvaptan / Jynarque for the past week (up to 60/30 from 45/15) and I'm happy to admit... It's been a non-event. Water consumption has remained pretty much the same. No real change in thirst. One bathroom break per night. Manageable. I see my nephrologist in two weeks so depending on what she thinks, I may be moving up to the Big Leagues - 90/30 - soon.