JORDYN'S ITP JOURNEY

For a bit of context of my thru-hike: over the next 6 months or so, I will be solo hiking all 2,194.3 miles of the Appalachian Trail, which spans from Georgia to Maine. I’ll be carrying everything I need in my ~35 pound backpack and resupplying with food, water, and gear replacements along the way. I will be doing this all while getting monthly blood checks in towns to ensure my case of immune thrombocytopenia (ITP) remains under control.

I had planned to set foot on my thru-hike in May of 2021 and spent the year prior talking to past thru hikers, researching, preparing, and planning. I was a seemingly healthy, very active 23-year old at the time with no obvious symptoms. I noticed some small pin prick sized red dots on my lower legs and feet, but figured, “eh, it’s probably just a little razor burn or something.” Before setting off into the woods, my parents encouraged me to schedule all of my routine doctor appointments, one of which turned my world upside down.

After the routine blood work came back with a very low platelet count, as did the follow up blood draw, I was sent to a hematologist, where I was asked endless questions about my medical history, family history, and any present symptoms. I mentioned the little dots on my legs and she explained that they were petechiae, aka, my blood vessels were leaking… I knew platelets help stop bleeding, but hearing that my body was just leaking blood in my normal day-to-day life, without a cut or bruise, was quite alarming. All I could think was, “I was just a collegiate diver throwing myself off a 10 meter platform, I’ve been training for triathlons, and I am now less than a month away from my big 6 month thru-hike, what could I possibly be dealing with?” My hematologist told me, “you’re a very unique case, but we’ll figure it out.” While those words are not the most comforting to hear from a doctor, I appreciated the honesty and transparency. Other doctors reviewed my case, and in the meantime, I had 15 more blood samples taken and was rushed for all kinds of tests: a bone marrow biopsy for blood cancers, DNA testing to assess risk of other cancers, an abdominal CT scan to check for tumors, and more.

Over the coming weeks, thankfully, I received negative test results for leukemia and lymphoma, but we still did not have a diagnosis and needed to get my platelets back up (they were down to 36; normal is 150-400). My doctor and her colleagues agreed it was not safe for me to be on trail, and with exactly one week until my hiking start date, I had to make the heartbreaking decision to cancel everything I had been preparing for. I was eventually put on a steroid treatment (prednisone) and with my platelets bouncing back towards normal within 2 weeks, I was diagnosed with ITP.

Treatment has been a bit of a roller coaster. I started off with a high dose of prednisone and tapered off over 3.5 months. I relapsed at the lowest dose, and did a slower additional 4.5 month taper. Just 2 weeks after finishing the steroids, I relapsed again. The best option for me after that was to try Rituximab infusions (2 infusions, 2 weeks apart), since I knew there were better chances of the infusions being successful when done as an earlier treatment attempt. I just recently had my 2 month blood check since my last infusion, and I’m happy to say that my platelets are still well in the normal range! That news made me beyond ready to hit the trail, even with the added medical logistics.

While last year was painful in many ways, I am so thankful that we caught this when we did, preventing me from being alone in the woods in a potentially very dangerous situation and miles from medical help. Because of this, I have become a huge advocate for encouraging others to go to annual doctors visits and getting blood work done. Health is far more than just being young and/or active.

The things I am most looking forward to in my thru-hiking journey are seeing how I grow and become more confident as I overcome the physical and mental challenges of the trail, meeting new people of various ages, backgrounds, and stories, and experiencing it all within the beauty of nature. If you want to follow along on my journey, feel free to subscribe to my YouTube channel, JSak and a Backpack! (It won’t show up searching on YouTube, but if you search it on Google, it pops up as the first link).

I’m grateful to my family, friends, and even strangers for supporting, encouraging, and reenergizing me through every moment of this past year. I’m grateful for PDSA for being an incredible source of information and sense of community during my time of need. I’m grateful to be out on trail and living my life!

 

 

 

 

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