Last week I had an appointment with a new primary care physician. I haven’t really had one since my pediatrician passed away because I have a variety of specialists. They have always been able to manage everything and make any necessary referrals, medication adjustments etc. This can get confusing though because it’s hard to know which specialist should handle which issues. The nurse practitioner from the Assisted Ventilator Clinic suggested a specific provider who could serve as my primary care doctor but also is a palliative care physician. I’d seen her pre-pandemic through the Palliative care clinic and really liked her so I felt like this would be a great fit. Plus, then I’d be able to have a point of contact for more general illness or health related issues.
My appointment didn’t quite go as I expected… I was thinking I’d check in with her, get a physical form filled out, and then reach out as needed. Instead, my doctor spent over an hour with me and my mom going over a variety of concerns I/we had but had previously discussed with my specialists. I felt listened to and seen (not that I don’t love my specialists but this was different). We talked a little about the various psychosocial changes that have occurred over the last few years. For example, the pandemic, my grandma living with us and eventually passing away, changes in my ventilator usage needs etc.
Blood Pressure and Cardiology
Then we talked about more concrete health concerns: increasingly high blood pressure readings, a few instances of feeling like my heart was having “skippy beats”, unexplained rib pain, increased daytime fatigue and weight gain. Over the last year or so my blood pressure readings at doctor appointments have been increasing but I wasn’t sure why. Could it be “white coat syndrome” or was it something more serious? We took 2 readings at my appointment last week and both were high enough to be concerning. I ended up having an EKG in the office and it showed delta waves which is characteristic of something called Wolff-Parkinson-White (WPW) Syndrome. This is a condition where there’s an extra pathway in the heart resulting in larger amounts of electrical activity. I’d been diagnosed with this a few years ago but told my case was really mild and only needed to come back to cardiology if symptoms became bothersome or concerning. Since I’ve had a few instances of symptoms again I’ll be getting another echocardiogram and appointment with a cardiac electrophysiologist. I’ve also been started on a very low dose ACE inhibitor. I have a blood pressure monitor here at home that can be used with a pediatric sized cuff so we have been doing daily checks (https://www.amazon.com/Automatic-Pressure-Monitor-Electronic-Sphygmomanometer-dp-B07FMJG779/dp/B07FMJG779/ref=dp_ob_title_hpc). My numbers are still higher than they should be so my medication dosage probably needs adjusting. I’ve messaged the doctor with my daily readings am waiting to hear back.
Bone Density
Next up we talked about how I had some really bad rib pain without an apparent injury about 2 months ago. This wasn’t the first time this had happened and I’ve typically focused on symptom (pain) management since there isn’t really a treatment for rib fractures anyway. This last time I had an x-ray to check for a fracture but the reading radiologist didn’t assess for one because of poor image quality and “significant demineralization”. Therefore, I’ll be getting a DEXA scan to look at my bone density. My doc is thinking I likely have osteoporosis. I got the impression that if the scan confirmed this then we might explore options for addressing that. I don’t know yet if that would be a pill or injection or perhaps infusion?
Weight Gain and Nutrition
Finally, we talked about my weight gain. The interesting thing is that when we looked at charts of my blood pressure and weight changes they lined up pretty closely
Even though the weight gain hasn’t been overly dramatic, it appears to be significant enough for me. It’s hard because it’s not like I can pinpoint a cause for this gain- there’s so many factors involved: medication side effects, normal aging, dietary/nutrition issues. I’m on a steroid for my Adrenal Insufficiency and a hormone for managing some other conditions. Both of these have weight gain as potential side effects. I’m 34 now so I suppose my metabolism is changing. Finally, I’ll admit my diet isn’t the best. I’m picky… but I have been doing better lately! I am trying to make better choices related to sugar intake. I’ve also started eating meals through a service called Nurture Life. It’s basically a meal kit service designed for kids filled with hidden fruits and veggies. Most of the meals I’ve tried I’ve liked so far! The tastes and textures usually work for me and the prep is so easy: 1 minute in the microwave.
Nurture Life Information
I’ve been ordering Nurture Life meals and snacks and they’ve been a lifesaver. They deliver delicious, nutritious food for babies, toddlers, and kids that’s ready to eat in 1 minute! Use https://www.nurturelife.com?referral_id=SVWATY to get $60 off.
Meal examples: https://www.nurturelife.com/menus?navItem=heatable-meals
So between those meals and moving towards more plant-based and low glycemic index foods I’m hoping to prevent additional weight gain. Finally, I have an appointment in October with a physician who has experience with weight management for people with complex situations like mine.
Appointment Wrap-Up
So, to sum it up:
Needless to say, it’s going to be a busy few months. I am really hoping though that by addressing all these things I can feel more energized during the day and improve my overall health / quality of life.
