There has been much buzz on both sides of the fence in healthcare about the recent news articles concerning the Apple Health app.

I realized in the course of my blog I’ve talked about technology quite a bit, & done reviews.  Yet, I’ve never showed anyone outside my family & a few close friends how I use technology on a daily basis to help me with transplant life.

I realize that sharing my routine, (now that it’s become more fluid) might help some people, especially those newer to transplant so I’m making this post.  (Bear with — it’s long but good info.)

After I was first transplanted, I had a very hard time with the meds remembering what to do & when to do it.  My best friend & I are big fans of to-do lists & checklists. We  printed out sheets at the transplant house for a daily binder to keep things organized & on track when we first developed the routine.  This also served as a reinforcement that I had in fact done things I needed to do.  It later served as a framework I still follow mentally on a daily basis.

We used Google docs to develop the sheets which looked like this:

             Date:__________

 

• Weight Check _______

• Temp Check ________ (no liquid 20 min before)

• Breakfast

• Nystatin

• 8AM meds/ Snack for Atovaquone

• Micro Spirometer  FEV1 ________  FVC________

 

                                           FEV1 ________  FVC________

        FEV1 ________  FVC________

 

• Blood Glucose _________

• Insulin (see schedule for units)

• Lunch

• Nystatin

• Exercise ________

• Blood Glucose _________

• Temp Check _________ (before meal, no liquid 20 min before)

• Insulin

• Dinner

• Nystatin

• Blood Pressure ________

• Bedtime Meds (around 11pm)

• Nystatin

(Then I had a space with with new symptoms at the bottom or additional as needed meds I was taking. I also had a few lines for notes on clinic days to jot down updated instructions from my appointment.)

I had a separate schedule for days I had blood work that had those reminders and prompts built in too.

(Nystatin is a liquid medicine taken after meals & at bed so it was hard for me to remember at first since I couldn’t throw it in a pillbox with the rest of my medicines. I took that for about 8-9 months.  I still have one liquid I take because I’m allergic to another medicine but that’s once daily with a meal so I don’t have issues with that.)

At the end of each month, I’d go in to a “real” calendar planner & write in my top FEV & FVCs, record my temps, weight, & blood pressure.  This took time.  I had to go through all my logs & pull that data.

I wouldn’t do my glucose or exercise in the planner because I had a Fitbit Charge HR or a similar tracker that would record/store my daily exercise.  My Dario/Accu-Chek meters would record my glucose & insulin logs.

(I couldn’t use my Dario after upgrading my phone either, so I moved to Accu-Chek Aviva Connect.  The hospital had given me a One Touch Ultra Mini but I found too many misfires & wasted strips with it. Plus I found it hard to use, it shut off on me at weird times.)

But — how did I simplify/digitize the rest of my routine?

My digital thermometer the hospital gave me broke while I was still getting post transplant rehab.  I had been using a Kinsa Smart Stick pre-transplant so I went back to using it.

When I upgraded my phone later (and thus lost my headphone jack), I bit the bullet & purchased a Kinsa ear thermometer.

The Kinsa app keeps a log but it also writes & syncs to the Apple Health app.  I don’t have to do any manual logging of my temperatures anymore unless I want to.

When I get up in the morning, I hop on the scale.  I have a Weight Gurus smart scale  that I obtained during a sale with an additional coupon from Bed Bath & Beyond.

It has it’s own app too, but writes & syncs to Apple Health app.   I no longer need to manually log my weight.

Next I take my breathing numbers (spirometry or also known as FEV1 & FVC). My home spirometer the hospital provided me is digital but not not connected.

I’ve tried looking around for a connected one but they are either too expensive or not readily obtainable or really clinical grade from what I’ve researched.

So I take anywhere from 4-6 readings to get an average. I jot these on a small piece of paper in a notebook. After I’m done testing,  I plug the resulting average into my Apple Health app since under Health Data there’s a spot in the results tab for these numbers to be manually added.  I can at any time see a chart or average of my numbers over the past week, month, or year.  I can also just see a regular vanilla daily list.

When my doctors ask how my trends have been I open the App & hand them my phone.  Then they look for themselves.

This is one reason for my excitement for hospital integration.

To be able to email these or print & save them or upload them to my patient portals for my health systems would be so much easier & a great functionality to have. Especially if they ask in between appointments or I note something of concern.

I can get at that data readily but not being able to actually get it off my phone can be frustrating at times.

Later in the evening, I repeat my monitoring process with glucose testing, & temperature.

Then I do my blood pressure.  I have an iHealth Ease which is connected. It has it’s own app but does write to Apple Health.

(The blood pressure monitor the hospital gave me was frustrating to use, it always took me 4 tries before it worked so I went back to using my iHealth device. I haven’t had issues with accuracy.)

I also have an iHealth pulse oximeter I keep for exercise or emergencies that also uses the same app & will write to Apple Health.

So all this time I would have spent manually recording & updating is done.

Along with my med list (which I pull up frequently), & my emergency contacts in the Medical ID tab of the Apple Health app all of my data is there in one place.

This is in spite of several apps that keep their own logs so they serve as their own backup.

For the first year I was using a connected pillbox system & a medication reminder app in addition.  But I find setting alarms & reminders from my iphone to be just as effective (or moreso in my case) since I’m still constantly changing meds & dosages now that my first year is past.

There are some good systems & apps which I’ve reviewed (& linked to above), but sometimes with a dosage change or a schedule adjustment it can be hard to get the flexibility I need to change the times & update without completely resetting everything so I’ve gone to using the alarms & reminders, my calendar and/or voice memos for the time being.

My friend even showed me recently how to label specific alarms.

I can use distinct tones too for audio cues which is primarily why I needed the apps in the first place.

Is it a perfect solution? No.  Will it work for everyone? No.

But does it save me a lot of time & hassle? Yes.

Especially when I’m not feeling well or have days with multiple appointments,  it really saves me time.

I realize that not everyone is an early adopter or Applephile like me.  But there are lessons that can be learned from this.

This system makes things much easier for me planning wise.  It has helped me with strategies in drug planning for insurances/Medicare coverage, managing refills, & other things.

But it also leaves me enough flexibility to make changes as I need on a hourly, daily, or even longer term basis.

Plus it helps me when I’m in the hospital or have an emergency.

I’ve handed EMTs or other practitioners my phone & had them copy the information they need directly. I feel this minimizes miscommunications & errors.

I’m not sure if Android phones have similar capabilities — perhaps they do.

But for me, I very much welcome the ability to integrate & share this data with my docs without me having to figure out a way to export it or copy it myself.

This news is exciting to me even though I understand the privacy issues & other debates surrounding it.

I ultimately just want to have the option to decide for myself though whether I can access, download & share that data with my medical teams in an easier fashion.  I want others to be able to have that choice too.

So to me, this news is welcome.  Especially since I deal with my local hospital system & another transplant center but sometimes I also like to ask opinions of researchers in my rare diseases at other institutions about things I find or new diagnoses.

Anything that saves me time in playing monkey-in-the-middle communication wise, shuffling records, & data wise is a huge help.

Especially because it’s not just my transplant data, it’s also my rare diseases that also have similar coordination & tracking issues on a regular basis too.

Luckily my transplant center seems to be one of the beta test sites. I’ll have to ask them about how I can access the update when the time comes so I can test it out.

 

(FEATURED IMAGE CREDIT: Photo by Rahul Chakraborty on Unsplash)