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...
There is no cure for PKD. None. Nada. As for prevention, all you can do is eat right, exercise, control your blood pressure and wait for things to progress to End Stage Renal Disease ('ESRD'). At that point your choices are dialysis, possible transplant and/or letting nature run its course. Pretty dismal-sounding but don't give up hope!
A year ago, the FDA approved a drug that has been proven to slow the growth of the cysts which will delay the progression to ESRD. Now we finally have hope! And THIS is what my Friday call was all about.
On Monday, a Fed Ex package will arrive at my home with a drug called Tolvaptan aka Jynarque aka Samsca (I swear the people who name these drugs must be altered at the time).
Let the games begin!
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...
An equal opportunity, inherited disease. Gee. Aren't we lucky?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)
Everyone with the ADPKD gene has a 50% chance of passing this mutation along to each of their children. My family hit the lottery. My grandmother died from PKD (at the time, doctors didn't really know what was wrong with her). The ADPKD gene was passed along to both my mother and uncle (two of two children). Both have had transplants (very blessed). And of my mother's three children, we're three for three. We're still waiting to see how our cousins fared in the lottery.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 water (making urine).
In people with ADPKD, the lining of individual nephrons can balloon out, causing fluid filled cysts to form. Over time, more and more cysts appear and increase in size, leaving fewer healthy nephrons and space to filter the blood. People with severe ADPKD can have kidneys as large as a football. (pkdinternational.org)
There is no cure for PKD. None. Nada. As for prevention, all you can do is eat right, exercise, control your blood pressure and wait for things to progress to End Stage Renal Disease ('ESRD'). At that point your choices are dialysis, possible transplant and/or letting nature run its course. Pretty dismal-sounding but don't give up hope!
A year ago, the FDA approved a drug that has been proven to slow the growth of the cysts which will delay the progression to ESRD. Now we finally have hope! And THIS is what my Friday call was all about.
On Monday, a Fed Ex package will arrive at my home with a drug called Tolvaptan aka Jynarque aka Samsca (I swear the people who name these drugs must be altered at the time).
Let the games begin!
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