My Two Gallon Habit

Sun Mar 31 2019 - With a family history like mine, I've done plenty of research on Chronic Kidney Disease ('CKD') as well as Polycystic Kidney Disease ('PKD'). But my opinion is that you can never learn too much and the repetition makes it stick. So when I heard that the Minnesota Chapter of the National Kidney Foundation was hosting an afternoon seminar I was all in. There were four separate tracks: early CKD, Dialysis, Transplant and Pediatric. I went to the early CKD/New Diagnosis sessions. The first session was 'Coping with CKD and Sadness, Despair and Fear' led by a gentleman named Ted Bowman . When he mentioned the name of a book he had written, 'Loss of Dreams: A Special Kind of Grief,' the tears started flowing and continued throughout his presentation. It's what I need to break through now. I need to grieve the future I thought I had and adjust my plans to include the reality of this disease. I need to figure out how to live my ...

Sat Mar 30 2018 - And the clock is ticking! I was never a scout - but my dad was a scout leader for a while - so that must be where I get my pull (possible neuroses) to always be prepared. So today was a whirlwind (yes, I exaggerate) of activity to get ready for Medication Monday. While  Tolvaptan  can slow down cyst growth in kidneys, there are two big side effects - possible (temporary) liver damage and loss of body fluids (yes, you pee a lot). The liver function is very closely monitored through bi-weekly liver tests that eventually turn into monthly tests and so on. If they find issues, the drug is discontinued, liver function returns to normal and then you either try a lower dose or stop taking it altogether. My prep was not for that side effect. My prep was for what will become my Two Gallon Habit. That's right. Water is soon to become my best friend as well as my worst nightmare. My first stop was Target. With all the time I'll be spending in the bathroom...

Fri Mar 29 2019 - It finally happened. I received a call from the specialty pharmacy. They received my prescription. They received all necessary paperwork. They received insurance approval. They were ready to send. Was I ready to receive? YES!!! A little background. I have Polycystic Kidney Disease - Autosomal Dominant ('ADPKD') to be precise. 'What the heck is that?!?' you may ask. A most excellent question... ADPKD is the most common hereditary kidney disease affecting over 12 million people   worldwide. It's estimated that between 1 in every 400 to 2,500 people has the disease. It can affect women and men, across all ethnic groups. ( pkdinternational.org ) An equal opportunity, inherited disease. Gee. Aren't we lucky? Healthy kidneys are about 10–12 cm long and are found either side of the mid back. They’re filled with about one million special tubes for filtering the blood. These are called nephrons; they filter out waste products and excess wate...