Vasculitis Awareness Month: Day 4

Vasculitis Awareness Month; Day 4:

I couldn’t find the picture of one of my infusions, but this seemed appropriate for May the 4th, as I was on my way to get an infusion and quite irritated, but grateful I had the best doctors who communicated via text, came out from seeing patients just to show me their notes to prove that the infusion department was not correct, and making sure I got my infusions.

Doctors like this are hard to find and I deal with my horrific insurance company for HOURS every week for the sole reason that I choose my insurance based on NOT losing the doctors who have saved my life. They listen, they want to learn and teach, they appreciate questions instead of getting annoyed… one of them even decided to admit me, but first asked me, “I know you have two girls. Do you have someone who can care for them?” I was STUNNED. He is the medical director of Advent Health’s cancer and oncology unit (Dr. Carlos Alemany), and he remembered I had two minor children, and actually cared whether I COULD stay long enough to get answers. (The bonus side note here is he went to the same college as my father for undergrad in PR! So nice to see one of our own so gifted at his work, while maintaining incredible compassion for his patients!)

Because he was who he was, he flat out told me: “I know what you have, YOU know what you have, but your rheumatologist wants a biopsy, so we are going to keep you here until we get one.” Others doctors tried to release me and I refused until it came from his mouth, and each time I said I wanted to hear directly from him or his colleagues, I was correct about what he wanted. I thank God for these doctors every day, because I was on death’s doorstep when I found them.

I saw him because he was a hematologist, but he had done the two fellowships at the Cleveland Clinic, where they study my condition, and he was one of the only doctors who had any experience or extensive knowledge about it. I saw several doctors who pretended to know, and I knew by asking only a couple of questions that they were not being sincere, and I can’t trust my life to a doctor like that. Others simply refused to see me because they weren’t sure how to treat me. I appreciated their honesty at least.

Incidentally, the other one I trusted most at that time, God bless him wherever he moved to, did NOT have any experience with it, but he did NOT lie, he listened, he learned a little bit from me and then hit the books until he knew more than I did. I trusted him with my life as a well.

He knew me so well, that when he was “off” and the answering service said not to contact him, I asked that they just let him know I was admitted and he didn’t need to call back. Would you believe that man was standing next to my bed in less than an hour? He was actually working another hospital and said he knew if I let them admit me, I must have thought I was dying, because I do NOT trust hospitals.

He left the practice and I cried for three days. It’s amazing how your doctors feel like family when your life depends on them. They see you at your absolute worst, and they reassure you when you start thinking you’re crazy, or encourage you when they see you dipping into medical overload/depression. The only thing that helped with that was being moved up to the head of pulmonology at Advent Health Hospital nearest to me (Dr. Daniel T. Layish). He is now, hands down, the most AMAZING doctor I have ever had! He has been at his office as late as 1900 taking his time answering questions, and then apologized to ME for the wait, when I would have camped in a tent to see him if I had to! (Dr. Daniel T. Layish) I could not recommend these doctors enough! Even my 12 year old knows which is which! Another who is both gifted and compassionate beyond belief!

So, after a particularly ridiculous day of struggling with a department that had to be set straight by my medical heroes, imagine my surprise when I was exhausted and over it all, and the elevator doors opened up to this on my way up! Totally changed my mood for that day! Grateful to the nurse who was kind enough to take our picture.

Don’t mess with my doctors…
They have storm troopers! 😂❤️😂

May the fourth be with you!

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