Thrui-Hiking with Lymphedema and/or Pacemaker/Defibrillator

[Sailor (The other one)]

My wife recently dealt successfully with breast cancer and heart failure. Chemo and surgery beat the cancer. She's had a pacemaker-defibrillator installed for the heart failure. She now feels great.



Surgery removed some lymph glands and she has to deal with lymphedema in her right arm. She has a device that lives by her bedside, monitors her heart and sends info to her cardiologist.



We plan a thru next year. Her docs say she can do it. Cardiologist says she can use the heart monitor over the net.


I'm looking for thru-hikers who have dealt with either or both of these issues on their thrus who can tell us what it was like, what worked, what didn't, tips, hints, advice, etc.


Thanks.

[Slo-go'en]

I have a feeling you have a unique situation and will have to figure this out on your own. Besides the usual issues of old people hiking the trail, your primary concern is probably how to get data from the pacemaker to the internet.

The pacemaker/defibrillator probably records data and then sends it to the device by the bed via Bluetooth. Now the question is how does the bedside device talk to the Internet? Does it use WIFI? Since there is no WIFI in the woods, you will have to use a Cell Phone. If the pacemaker could talk directly to the phone via Bluetooth, the phone could then connect to the internet. You would probably need a special app for the phone to talk to the pacemaker. Otherwise, you could set up the phone to be a hot spot to connect to the bedside device. But how does the bedside device get it's power. If it uses an AC adaptor wall plug, power it in the field could be a issue. The other question is does it get it's data from the pacemaker once a day or is it always connected? My guess it's just once a day when your in range of the bedside device.

Another issue is what happens if the data you send indicates a problem. How do you get notified that there is an issue? Keep in mind your not always going to be able to get cell phone service.

[Alligator]

Good to hear your wife has overcome such serious health issues, I admire her spirit. I can only offer some basic tips.

Get a good battery recharger.
If the device operates over wifi, you could possibly use your cell phone as a wifi hotspot. This would be subject to your carrier and data plan. Alternatively, a dedicated mobile hotspot could be used. More details about the device might help, it probably has a battery backup? It probably plugs in for sure but I suspect isn't a particularly heavy electricity draw?

My mom has a pacemaker. I think she said they can adjust it over the phone. I know they read it over the phone but your wife's device sounds different.

[Sailor (The other one)]

Thanks guys. Good questions. The cardiologist agreed to meet with us before the hike and explain how we will do this. I dimly recall his mentioning an app. Currently, the device plugs into the wall and sends its info over a landline. But it came with a wifi modem. I suspect we will send data when we can - in town, when we can get cell service, like that. I plan carrying a personal locator beacon in case she has a heart attack.
I'm hoping to hear from other thru-hikers who have hiked with these and with lymphedema. She has a lymphedema sleeve, she has exercises to do and I've been trained in lymphedema massage, but I'd like to know if I'm missing something about hiking with that condition.

[Slo-go'en]

We'll have to wait and see if anyone else has had to deal with your wife's condition. But I suspect your in uncharted territory. Most people with serious health issues like that don't go on thru hikes or if they do, generally don't last too long on the trail.

[moldy]

For safety sake don't try a South bound hike. If something is gonna happen health wise you don't want to be anywhere near Maine when it does.

[KCNC]

Cover all the bases as mentioned above, then have a list of all the convenient bail-out spots (in my estimation there are *convenient* spots about every 30 miles, maximum, until you get to Vermont.) Have local emergency contact information for each bail-out spot.

This level of preparation will almost certainly guarantee that her health won't be one of the challenges you face on the trail.

Good luck, I look forward to cheering you on!

[Sailor (The other one)]

Thanks everyone. We plan starting from Springer in May, after the bubble, and taking it very slowly. We don't feel any need to complete a thru if we can't. If all goes well, we will flip up to Maine and start south from there in July., after the bugs and rain and high water Then we will be walking home since we live in North Carolina not far from the trail.. We've started training. We live in the mountains and own 2 1/2 acres on which I made a trail with a narrow bridge, switchbacks and a straight up stretch. We do that daily and have started with some day hikes on the Chunky Gal Trail. We are increasing our distance very slowly. So far she has done very well. We are planning meticulously. I appreciate the ideas. I've added a list of bail out spots and emergency numbers to our plan.

[handlebar]

For safety sake don't try a South bound hike. If something is gonna happen health wise you don't want to be anywhere near Maine when it does.

True thus. You might want to consider a flip-flop itinerary: Harpers Ferry nobo or sobo. Once you get beyond the Potomac valley nobo or the roller-coaster sobo, it's fairly easy trail. That way you can work gradually into your hikes.

[rocketsocks]

Since falls are a very real accident while hiking and hurting which ever side the lymph nodes had been removed on could be bad, make sure you land on the other side to avoid further complications arising from infection load on an already week immune system.

[Slo-go'en]

Realistically, I'd be looking at this as a Long section hike rather then a thru. That takes a lot of pressure off you. Starting at Springer in May is a good plan. Mild weather and a well serviced area.

Your backyard trail is ideal training. Keep it up. Good luck.

[wordstew]

Cardiac and all other rehab has dramatically changed over the years and now most practitioners encourage you to be active. So long as your docs are on board and you have all you contingency plans in place then go for it.