Below are posts beginning a week after my diagnosis with CTEPH.
7.31.2022: Still waiting to hear on whether I’m a candidate for surgery. I will call the program tomorrow and hopefully get some guidance on time. For now, we are seeing patients at the office as usual. I have fewer office hours because of my own appointments so please call to schedule with more advance notice than usual. I will have a hard time fitting people in at the last minute. Thank you all for your support.
8.1.2022: Surgery tentalively schedule for 8.17.22. Any patient with an appointment scheduled from 8.15.22 to 9.15.22 should email me for instructions, or call Nancy if you do not have email. I want you to email just so that I know that I have YOUR email to respond to you. Please send the email to email@example.com and be sure to include ALL of the following – your DOB, your name, AND your mailing address. Thanks!
8.2.2022: Waiting to hear on insurance. Lined up for 3 days of tests at UCSD starting next week – VQ scan, heart cath, pulmonary angiogram, and of course a COVID test…. then if all falls into place, surgery on 8/17. I am seeing people this week. If you need meds in August, get your email to me soon!! MUST include all of the things mentioned above — DOB, mailing address, dose, type (cap/tab), number per day.
8.3.2022: If you haven’t emailed me, be aware that I will not receive emails, or respond, after noon on 8.5.2022. I really hate the idea of people running out of medication, but I will have no options after that time for at least a couple weeks, maybe longer. I keep hearing ‘oh, I never check my mail’…. For those of you seeing this for the first time, if you will run out within 30 days – before September 3 — email me ASAP with ALL of the following. Read carefully — if it isn’t there, I cannot send anything. Med INCLUDING capsule or tab or film, dose, number per day, YOUR DOB, YOUR HOME ADDRESS. Do it NOW — I will not be in any position to make exceptions. Thank you!
8.6.2022: Yesterday was tough. Got a call saying a place opened for N to stay, next to the hospital – great news. Ten minutes later I got a message that the insurer denied the surgery because it is out of network. But there are no places ‘in network’ that do the surgery I need to get better. My docs are calling the insurer on Monday to make my case to the insurer’s medical director. So please send convincing thoughts in that direction so that I can get this done. UC San Diego scheduled my testing and surgery for one week later, and I hope to be there.
8.8.2022: Just got another lovely call from Walgreens near my office. Their new pharmacist refused to fill Vyvanse for a patient because she added up all the days she came a day or two early, and now she has ’12 days extra’, and she is making the patient wait.
PLEASE avoid Walgreens if at all possible, surely the one near my office. New pharmacists do not understand health, or care, and certainly not healthcare. They will fill your script at 28 days, month after month, and then cut you off out of the blue. They would rather make you sick for a week than do anything to help you.
Yes, I’m a little stressed…
Still 8.8.2022: Less crabby because I got a call from my health insurer that my surgery will be approved. Thanks to all of you who sent positive thoughts my way. Testing starting 8.16.22 and surgery tentatively on 8.23.22. Typically ICU 3-4 days, then 2-3 weeks in the hospital.
8.10.22: Some patients were seen and given prescriptions before the date that Walgreens, followed by other pharmacies, suddenly started demanding addresses on controlled substance scripts. I’m sorry – there was no advance notice, and before that date there was no address requirement. IF you are one of the persons, you can stop by my office tomorrow Thursday 8/11, and I will add the address for you. We will be in the office from 10:30 AM until 3:30 PM. I’m sorry – that’s the best I can do!
After tomorrow I’ll be packing, then leaving for California. Thanks for all of the nice emails and wishes.!
8.11.22: The office is closed for the next few weeks. If you have an emergency, please go to the ER or call 911. I will try my best to get emails — firstname.lastname@example.org — but there will be days when I am out of commision, especially between 8.24 and 8.31. Please, if you think you are out of medication, check first with your pharmacy. Medications were called in for most people and you may have refills waiting for you.