Feeling more calm today.
I think I’m starting to recognize that until my Hopkins visit (1 month away!), I’m not going to know much more than I do right now, and I just need to make peace with that. At the same time, I do not need to fixate on all kinds of bad scenarios (which is admittedly what I had been doing). It isn’t helping. I’m not “getting ahead” of it or solving anything. I am just making myself really stressed out.
SO, new tactic: for now, I am just going to assume that for now I am safe (that was the point of the implanted defibrillator, after all!) and await further information/instructions for long term management. I will limit exercise to yoga, pilates-type stuff and walking, all of which I was told are okay. I will not overanalyze my heart rates on the Apple Watch (my Holter results came back and while I have a fairly high # of PVCs, the local EP cardiologist called me and did not sound overly concerned so I will not be, either).
I wonder how I would be handling all of this without a medical background. I actually think it would be better. So I will try to act more like a normal person and wait for the experts to tell me what to do instead of feeling like somehow I could figure it out (reading academic papers, trying to find people like me on forums, etc — I’ve done enough and I need to STOP).
I’m also going to embrace the advice that it’s okay to just be sad and cry if I feel like it. (BUT the hormonal tides have turned, as they do, and I feel a lot better today. I really think running was partially “treating” my PMS/PMDD).
Currently on hold . . .
It’s been 28 minutes of delightful hold music so far while I’ve written this post. I am trying to reserve a cabana at Volcano Bay (Universal’s water park) for next week! We are headed there for a short trip next week in lieu of our previously planned Disney Cruise. I feel a little bit regretful that we cancelled it (because probably things would have been fine!), but it also just doesn’t seem like the world’s smartest thing to do right now.
Apparently, there are these cabanas that can be reserved for the day at Volcano Bay that make everything easier (getting food! entering virtual queues for lines) and would be an awesome ‘base station’ for me, since I am not necessarily feeling like I want to/should go on crazy rides right now. BUT – you can’t reserve online (WHY?) and they do not seem like they want to answer the phone, ever. (LIKE EVER, I have tried multiple times and always end up in an endless hold pattern.)
(And I have this feeling they are probably all sold out now anyway, but this is worth a try.)
Has anyone done Volcano Bay? We’re also doing one day of Disney (kids picked Hollywood Studios). I’m expecting it will probably be crazy crowded because it’s Easter week, but maybe the weather will still be decent . . .
(Side note: I am realizing we always travel when it’s crowded, because the times we have to travel are the same as the times that alllllll the other school kids have to travel! Not really sure how one would get around this!)
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I think leaving the research and prognostication to the experts is the approach to take but that is hard to do when you have access to so much information! Maybe you can set up a challenge similar to your Reddit challenge where you have to pay a kid if you go down a research rabbit hole. I am glad the Hopkins visit is TOO far off, and hopefully your appt later this month will be enlightening, too. But it’s encouraging that the cardiologist didn’t seem too concerned about your Holter results!
We tend to travel during peak times as well. We don’t travel all that much, though, and it hasn’t limited our ability to enjoy what we do. But we haven’t gone to any theme parks or Europe, etc. My first trip to Paris was in the summer and people told me it was an awful time to visit. But I had a blast. Yes, it was crowded, but it was a wonderful time of year to see Paris. My next 2 trips were in the winter months so there weren’t crowds but then flowers weren’t blooming at Versailles, for example. So there are downsides to off-peak travel. We did pull our Kindergartener from school last April for our spring break since his spring break fell during a week that Phil couldn’t be off work (which is always going to be the case it seems….). But I don’t see us doing that all that often so we’ll just have to deal with higher prices/crowds when we travel.
It is so hard to be like a normal person when you are a doctor. But of course when you or someone you love has a health issue that is beyond your area of expertise you know a little but not enough to be helpful. I love being a physician, but it does have some unusual challenges.
Just chiming in as a non-medical person to say that I also scour the forums, try to read all the papers, and generally obsess prior to and even after any appointment! I go back and forth on whether it’s better – I’ve read books like Rebel Health by Susannah Fox that basically says this is the new frontier, and can’t help but think of Kate Bowler finding a trial for her own cancer by reading and rereading her own medical records (I think it was something along those lines – I can’t remember the exact details, but know that she had to take things into her own hands at some point and was ultimately better off for it). My PCP and I have a lot of discussions about this 🙂
that is a good point!!!
Hold music! I have to make a lot of support phone calls for my job, and I end up spending a good bit of time parked on hold and listening to the music. Oof. Yes it is annoying to always be traveling when everyone else is traveling, but there is no way around it.
I’m glad that at least the Hopkins visit is now only a month away! I agree that it’s best not to take input from Dr. Google but who among us hasn’t? And also back in the day I used running to cope with/blot out a lot of stressors.
Non-doctor approach: Internet is helpful to help get general info and know what questions you want to ask your doctor. It certainly has it’s place, but it also has it’s limits. Think of the most annoying patient you’ve had who has diagnosed themselves with Dr. Google and strive not to be that patient 🙂 I agree your new approach sounds good, but also know it’s going to be hard to turn that part of your brain off. Good luck!
After I got my genetics results, I scoured the primary literature on the significance of my exact mutations (oh, sorry — genetic “changes” as they said at my appt), and the risk of hormone replacement therapy on my cancer risk. I feel like it did actually help me because when they told me that I HAD to stop HRT, I could be like, but what IS the risk. Is this going to be the difference between getting diagnosed with stage 1 cancer and stage 3? Because we all know that avoiding cancer is highly unlikely. They said no, it wasn’t anything like that. So, for now, I am still taking some of the HRT meds because I’m willing to trade off the benefit of not exsanguinating every single day and debilitating pelvic pain for a *slightly* *theoretically* increased cancer risk. This is all to say that I am very grateful for my medical training, and in no way do I think it made me a “worse” patient, or more anxious than I would have otherwise been. Since I don’t know a single doctor who can engage in shared decision making in real-life, I will do it myself, thank you.
In your case, honestly? I don’t think your Hopkins visit is going to be very illuminating. You, they will manage with medication and exercise restriction, and you will do great. I worry that they would recommend screening your kids, and that THIS is going to be the hardest part for you, but hopefully that won’t happen! On that basis alone, maybe you can reframe it as an annoying chore you have to do to close the loop on your diagnosis, rather than a medical appointment that is going to give you all the answers. Reflecting this way has helped me not perseverate over my genetics visits (and now subsequent visits with 1000 specialists). Remember you are still you. You are still alive. You still have your family and a ton of people who look up to you and/or love you. You will put one foot in front of the other and get through this.
PS — My hip has been bothering me again, so I did 20 min Aditi last night and it was helpful. Thank you for the suggestion… it looks like I need to do yoga whether I like it or not lol. Happy to be your yoga buddy if you need one, but I’m guessing I’ll have a bit of competition. 🙂
This is a great reframe!
Also, yes on shared decision making with patient/doctor! I had GD and th maternal/fetal health clinic quoted 40% increase in still birth (don’t recall exact number, but high) as a reason I needed to do twice weekly non stress tests (while still working full time) for the remainder of my pregnancy. It was true, but it was also a .07% vs a .075% risk (again, number recal is terrible, but it was low). The difference between statistically significant is actually significant can be wide and personal risk tolerance is just that – very personal. Thank goodness my OB was able to navigate that conversation with me and come up with a much more reasonable plan.
I have higher hopes because there’s a guy there that is like the leading expert on ARVC that I am seeing, and he sees 100s of ARVC pts. If nothing else, I think I will get clarity on a) DO I HAVE IT FOR SURE based on current criteria b) if I do have it, on the spectrum of having it, how bad? ie, can I stop worrying about heart failure in any near term time frame? c) would he recommend meds and d) what testing is needed for the kids (from what i am reading, will be periodic Holter/EKG/echos but no activity restriction unless anything shows up). bonus e) would be more specific exercise recs but I know that might not be as clear cut . . .
and yes! yoga is growing on me 🙂 I can see the appeal.
I’ve been to Volcano Bay and, although we didn’t reserve one, I feel like the cabanas are very popular. We just got there right when the park opened and put everything on a couple lawn chairs on the beach by the wave pool. It was hot (we went in July) and sunny but ultimately fine. The virtual queue system is great because you can “wait” for the more popular rides in the lazy or fast river (which was actually my kids’ favorite thing). It might be challenging for you to find somewhere cool to sit without the cabana – though I remember there being a fair amount of shade and it’s not *that* hot yet. Hope you guys have so much fun!
we didn’t get a cabana – but we got some reserved seats. I wanted to reserve bv it’s spring break and figured it’s going to be crazy and I REALLY wanted a shaded home base! at least the seats were way cheaper than a cabana!
We went to Volcano Bay 2 years ago on the day after Easter. It actually rained off and on throughout the day, which I think kept the crowds down a bit, but it was not crazy crowded for being peak spring break time. We did not have a cabana, although they looked really nice. There were enough umbrellas around that I parked myself in a chair in front of the volcano and read my Kindle while my kids did all the rides. The tap bracelets they have to reserve a place in line are really cool. Definitely the best water park we’ve ever been to!
Well. I can tell you that we always went to Disney/Universal in the summer, and that’s definitely no fun (sooooooo hot!) This way at least you’ll have a chance at decent weather (plus, one of the days you’ll be at a waterpark).
Yes, all of this is probably even harder for you with your medical knowledge. But- as you said, the whole point of the defibrillator is to keep you safe, and you’re following all the recommended guidelines. They wouldn’t have sent you home from the hospital if they didn’t think you would be okay! And.. you’ll get more answers soon.
the weather looks REALLY good!!! cool mornings, warm afternoon, no rain forecasted. hopefully it will stay that way.
The thing about worry/anxiety is that if we worry and get bad news, we worried twice and if we worry and nothing happens, we worried for no reason… so it’s usually a good approach to try and stay calm and not worry until there is something (else) to worry about! Easier said than done.