I spoke with the case manager in Pittsburgh yesterday who clarified some information regarding lab orders and prescriptions. But most importantly she told me that she had submitted the authorization to my insurance! FINALLY. She said typically once it's approved, I can get scheduled pretty rapidly. And she wanted to confirm that I still wanted … Continue reading Inching Forward →

I’ve been going to the cancer and hematology center every two weeks since early January. Obviously most patients seen there are dealing with serious life-altering health concerns. I am so impressed with the staff. They are primarily women, and from the clerks to the phlebotomists to the nurses, it is obvious they try to treat … Continue reading Shout Outs and Paranoia →

I had an incredibly informative video visit Friday with Dr. S in Pittsburgh. There were issues with her being able to connect to the visit initially (ah, technology in the age of COVID-19 when everything remote is being put to the test), but after that was resolved, she spent an unheard of 90 minutes with … Continue reading Road Trip? →

Last night Rose and I briefly discussed my going to California for this treatment since I haven’t heard anything from the Pennsylvania doctors. I had already sent her copies of my insurance card, diagnostic report, and two research articles on treatment. I really don’t like putting this on her; it’s a weird thing to ask … Continue reading That’s Gonna Leave a Mark →

My last email from the case manager in Pittsburgh was a month ago. I checked in with her via email 10 days ago but no response. I emailed Dr. A and Dr. C earlier this week, asking them the same question: should I be considering a different option? I’ve heard nothing. I know it’s only … Continue reading *tap*tap*tap* Is This Thing On? →

It’s been over three weeks since I heard from the case manager in Pittsburgh. She said she had hoped to have some answers for me that following week, but nothing yet. I emailed her a few days ago and asked her if she thought I should try to find a plan B if this Pittsburgh-bound … Continue reading Plan B? →

More blood work today. I actually hadn’t been to the lab or doctor in three weeks! It was nice to have a break. My normal schedule is blood work and an Aranesp shot every two weeks. (Aranesp is the drug that increases red blood cell production.) But last week I was supposed to be in … Continue reading The Fate of Alderaan →

Yesterday I got an email from the case manager in Pittsburgh. She stated that because of the coronavirus, they are "rapidly implementing video visits," and that they will likely be scheduling my video visit in the near future. She still doesn't know when I can actually be seen for treatment but will be speaking with … Continue reading Mini-Update →

Even after all this, I still like my local nephrologist. I still think she’s a good doctor. I think that generally some doctors just get scared by taking things on that are out of their wheelhouse. I think mostly they’re afraid of lawsuits, if I’m honest. But she’s aggressive and she took my case seriously. … Continue reading Random Thoughts →

So that’s where things are at the moment. I’ve communicated more with the case manager but of course everyone’s overwhelmed with the response to this virus so this may take some time. I did tell her that right now, my clinics have been cancelled, and I’m not seeing patients, so IF the opportunity arose for … Continue reading Holding Pattern →