I’ve been exhausted. Like spend-99%-of-my-time-wanting-to-cry-because-I’m-so-tired exhausted. PhD school is exhausting with a lot more work involved than I knew. For example: Monday through Friday, I wake up in time for my 8am class which lasts till 10am, I then walk to the lab where I do my research till 4-5pm. Somewhere in there I need to find time to study (Did I mention that anything below an 80% is considered a failing grade?). That alone is exhausting.
But for a Loeys-Dietz Syndrome patient, and a newly diagnosed one at that, things start to get a little more complicated. So let’s take away the fact that LDS itself causes pain (pain takes up so much energy… It’s unbelievable..) and focus just on the doctor appointments and tests required.
I haven’t had any scans since getting diagnosed and it’s starting to drive me insane. I know now that I’m more likely to have aneurysms. I know that I’ve had doctors who thought that I might have an aneurysm (which never got checked). I know that my grandfather currently has three aneurysms. I do NOT know, however, IF I have any aneurysms. And that’s driving me insane. I just want to know what little ticking time bombs I’m living with… I want to move on with this diagnosis and my life.
So I made an appointment with a doctor at student health services to get the scans set up, along with an echocardiogram, and get referrals to any specialists I might need. The appointment started off with the nurse saying “Oh, we don’t even have Loeys-Dietz listed in our system as a disease”. That’s when I started to have my doubts. But I gave the nurse, to give to the doctor, my latest genetic report, my genetic results, and a few papers I had printed off about Loeys-Dietz.
To my surprise, the doctor came in after having clearly read the papers. Mind you, she was still very lost about what Loeys-Dietz was and how to handle it, but she was obviously very interested to find out (read “she ordered a lot of tests”. My thyroid’s fine. I have proof. Again). But the end result of this first appointment, along with the follow-up one I had had two weeks after, is that I now have three MRAs scheduled for the end of the month and many specialist appointments in the near future. The doctor wants to set me up with a: cardiologist, neurologist, neurovascular surgeon, pulmonologist (this one has a bit of a backstory that I’ll go over at another time), and a gastroenterologist. She also tried to set up an appointment with a rheumatologist but I said no to this one.
But the point I’m trying to make here, is somehow I need to do the PhD thing between 8am-5pm every day while taking time to study after 5pm (because it’s definitely not happening before 8am). And somehow finding time somewhere to see these specialists and get the scans. Doing a PhD program and being a full-time patient is intense.
So today I slept the entire day and it felt wonderful.