I realize I threw many of you into the middle of this story. I’m sorry. I realize by doing so, I still have a lot of things that I haven’t explained that I need to, and I will in time I promise. The man pictured here, is Dr. D. He was my childhood Primary Care Physician from the time I was 6 weeks old. I was an oddball patient even as a child. Maybe that should have been our first clue. He was my doctor for the better part of the 30 years I’ve been alive. True there was a lapse in my care after I moved from my hometown when I was 19, until I returned to his care when I started getting sick back in August. That was a decade long gap.
When I started getting sick, back at the end of July, I knew he was the doctor to turn to. I knew he would keep me safe, and figure out what was wrong with me. I was right, he played a huge role in getting me on the right path to a proper diagnosis.
See a little back story, this man saved my life when I was 6 weeks old. My mom took me to see him because I was unable to keep my formula down, it was to the point I was not taking in nutrients and was starving to death. He quickly figured out the problem and I began gaining weight, and thriving. That is how he became my doctor. He saw me through many other moments where my body did strange things over the years and got me through them.
So in August after developing dizzy spells, double vision spells, splinter hemorrhages under my fingernails, and a few other symptoms, I called my mom and asked her to get me an appointment with Dr. D. I was terrified and I knew he was my best shot at getting an answer.
By the time I made it to my first appointment with Dr. D I had developed those little lines under all of my fingernails. Essentially they were little lines of blood or little clots from the small vessels under my nails. They were one of the first clues that got us pointed in the direction of blood clotting disorders back in August. This was of course after Dr. D ruled out a scary heart infection called Bacterial Endocarditis as they also show up with that condition sometimes. They were one of many clues that pointed him in the right direction. Even with that I did not have a typical presentation of Antiphospholipid Syndrome. Most people who present with it, have strokes, heart attacks, DVTs. Those are all large clotting events. My presenting clotting event was a Branch Retinal Vein Occlusion. That is a small clot in one of my small veins in my Retina. A micro clot. It wasn’t diagnosed until October. The event actually happened at the end of August, but I thought it was a prolonged Migraine Aura. After it was diagnosed I immediately started Warfarin, I will be on it for the rest of my life.
At that point, Dr. D sent me to my first Hematologist, that will be a story for another day. Essentially that man Dr. G, ran a bunch of expensive tests that my insurance did not cover… and got me an official diagnosis. That was his sole role in my journey. The diagnosis he got me was Antiphospholipid Syndrome.
I started this post, with a picture from yesterday, I took my mom to her doctor’s appointment. She still sees Dr. D. So did I until the end of January. My insurance decided in the middle of January that I could no longer see him as my Primary Care Physician and that they would no longer recognize his referrals. That is how Dr. C became my PCP. So yesterday morning I got up, ate breakfast with my husband at 6:30am and got in my burgundy red blazer and headed to my hometown. It’s an hour and a half from where I live currently. Not too bad but its long enough of a drive that I anticipated it would make my joints a little stiff and angry. I stopped part way at a rest stop to stretch and use the facilities and got back in the blazer and continued my journey. I arrived at my mom’s (well grandparent’s and mom’s they all live in the same house), around 8:30 and spent sometime talking to them. It’s the first time I’ve really gotten a chance to talk to them face to face since I’ve gotten my full diagnosis of both APS and Lupus. They don’t really know how to approach me and I think are a little afraid to ask questions. I don’t want to overwhelm them, but I also want them to learn. So I will educate them a little each time I talk to them.
After hanging out for a bit it was time for mom’s appointment so we headed to Dr. D’s. Mom’s check up went well. Which was great news. She has diabetes and this was a check up for that. She sees him again in 6 months for that. At the end of her appointment he asked me how I was doing. I gave a real quick up date. Told him Dr. C finally had my INR semi stable, higher INR range, that my Rheumatologist had diagnosed me with Lupus and that the plan was to start me on Imuran in May. He gave it is vote of confidence as for a good treatment option for Lupus. Then I thanked him for his role in getting me to a proper diagnosis and for all he did for me over the last few months, we both got a little teary eyed and then I asked if he minded if I got a picture of us together because he was an important person to me and always would be. Obviously he didn’t mind, as I got the picture. I was glad I got the chance to see him in person, and had the ability to say thank you. I needed to be able to see him and say that in person. I didn’t get a chance to see him in January when my insurance dumped the need to change doctors on my lap. Dr. D is retiring in a couple of years, the medical field will lose one of the great old school doctors when he does. There’s something to be said for doctors like Dr. D. There’s not many left like him. While I didn’t always agree with his treatment approaches, or his diagnostic approaches, he is a damn good doctor, he was just old school in his approach, but that’s what he was taught in his day. You can’t fault him for that really. So with that aside, I owe this man a whole lifetime of gratitude.