It has come to my attention that I’ve been missing in action at some of my usual haunts. And, people have been peppering me with reminders... they still want updates on my life. I can tell you this: The last couple of months have been stressful. The new year brings unneeded nonsense for the chronically ill.
Unfortunately I’ve reached a point where I am now having more bad days than good. I am back to frequenting my old suite at the emergency room. And since it’s the first of the year I have spent hours on the phone and online doing insurance stuff—out-of-network waivers, calling for pre-authorizations, etc. For example, I had a certain pill I knew I was going to need a pre-authorization for. This meant that the doctor writes a prescription for 30 pills. The insurance says, “Um, no, we will only help you cover 24.” But I need 30. Then that means having to wait for the doctor to write a letter to the insurance company saying why I need 30. Duh, one for every day of the month. Insurance company finally says okay. I finally get 30 pills. Meanwhile about 4 days have gone by. Ack! Last year when this happened I paid about $70 out of pocket for several pills just to have enough medicine until they were able to fill my prescription. Well, this year I was a little more prepared and was cutting pills in half and half again so I could make 3/4 pills. Then I pieced together 3/4 pills out of the 1/4 pills I saved from the ones I cut and saved. That way I had cobbled together some reserves for those days when I had to wait for my insurance company to approve the pre-authorization. But this. This is stuff that makes me stressed; mad. And this is stuff that kills patients. This is why people hear about patients running out of pills or rationing something like insulin. It’s ridiculous. If a doctor says to take 30 pills, then one shouldn’t need to have a doctor submit a letter explaining why they need them.
I realize I left my blog hanging at this summer. I had the Epogen injections a couple times and when they didn’t produce the results the doctors were looking for, they started me on weekly iron infusions. My ferritin stores increased and my hemoglobin increased slightly but it never went over 10 grams per deciliter, which is what they were aiming for. I am still anemic and tired all of the time. My creatinine is slowly creeping up. There's still talk of the kidney transplant in the near future. There's not anything I can do to stop it; no diet or supplements are going to fix it. My anti-rejection medications are damaging my kidneys and I cannot stop taking them.
Among this storm, there's a rainbow: I made it five years! If you are not familiar with lung transplant survival rates, I challenge you to google them, and then you'll understand why five years is a big deal.
