Management of the disease

March 6, 2012 at 7:02 pm Leave a comment

I’m realizing that the management of ARPKD could be a full time job. I just spent 40 minutes on the phone with Aetna Home delivery. Now I could go on for hours and hours about the problems I have been having with Aetna Home delivery over the last year but that would be a completely different blog post!!! So after spending all of that time on the phone with them I had to call the doctor’s office to talk about the prescriptions they recently faxed in. Because home delivery is saying the doctor only sent in a 30 day supply but the hard copy we have of the fax says a 90 day supply. So then I had to spend 10 minutes on the phone with the doctor’s office explaining the situation only to be told the person I need to speak with is unavailable and hopefully will call me back today.

Over the weekend we had to do a 72 hour stool sample. Sorry to be gross and descriptive. And when I say “we” I should also state I was out of town so the “we” was actually Matt!! So I am sure he wouldn’t want it to be a “we” statement there!! But managing that as far as the collection goes and then writing down every single thing Gabe ate was time consuming. Plus the fact that now in the next day or so I have to do a “poop run” as I like to call it. Because yes this is our third “poop run”!!! And the actual deliver will probably take over an hour of my time with parking and driving into the city!!!

Figuring out which doctors the boys need to go to and when is also a big chunk of my time. Calling doctors offices to schedule the appointments and then actually taking the boys to their appointments takes a lot of our valuable time. The driving, the parking, the waiting, the actual appointment, the paying of the copays, the blood draws, the urine samples, and most importantly the toy store afterwards to reward them!!!! It’s a whole day deal.

Paying the actual bills that come in now that our insurance has a huge deductible and then only pays at 90% after the deductible is a literal waste of my time!!!! And a pain in the neck figuring it all out.

Taking blood pressure and keeping track of it and managing it also take my time. Plus each week managing the pills is a whole big project. Gabe takes three blood pressure pills all twice a day, one pill in the morning for his bladder, and another in the morning for the bile back up. So that’s 5 in the blue morning pill case. Then he takes vitamin d at night plus the blood pressure pills. So that’s 4 at night in the white night pill case. Then Max takes 3 blood pressure pills in the morning and two blood pressure pills at night. His all go in the same case so that is 3 in the morning and 2 at night. First there is the management of putting them in the pill cases every day and then the management of actually making sure the boys take their medication every day on time!!

On top of all of that there is the research I like to do on the disease itself plus on the medications. Matt and I were talking today about who is responsible for looking at all of the drugs to make sure there are no interactions. I think that has to actually be my job. Plus my involvement with the PKD Foundation and keeping up with the blog and the ARPKD facebook pages!!! These things I actually enjoy doing because they all empower me but still take up my time.

The actual “management” besides the worry is making me slightly crazy!!! The worry has already made me crazy and now the “management” of the disease is adding so much more stress. Could be a reason why my headaches and panic attacks and anxiety have all increased recently!!!!

And yes the disease is far worse than the management of it. But who knew all of this would come along with it???


Entry filed under: Uncategorized.

Loss World Kidney Day

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

Trackback this post  |  Subscribe to the comments via RSS Feed

March 2012
« Feb   Apr »

%d bloggers like this: