Just an FYI: CMT SUCKS

Yohan’s Foot Surgery- #16

Thanks to all who have asked for an update on Yohan. I’ve been all caught up and preoccupied with the best-selling book, “101 Practical Tips for Dealing with CMT”.  If you have not ordered one, do so once you’ve finished reading this post. As a bonus, we are shipping all the books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link:

Thanks to all who have asked for an update on Yohan. I’ve been all caught up and preoccupied with the best-selling book, “101 Practical Tips for Dealing with CMT”.  If you have not ordered one, do so once you’ve finished reading this post. As a bonus, we are shipping all the books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link: http://www.cmtausa.org/101tips

updated-fpss

As for Yohan, he’s more or less become a permanent fixture in our dining room. Every once in a while I’ll stroll on by, dust him off, rearrange the furniture and water the plants. In front of his computer screen, he keeps himself busy with grad school applications, gaming, writing projects, gaming, reading, and did I mention gaming? He’d be perfect at that mannequin challenge which has gone viral over the past month or better yet, he might be able to break the Guinness World Record for competitive sitting (72 hours).

yo-dining-roomedit

Looking for Yohan? Look no Further!

The only reason I know he’s still living and breathing is that nasty cough he’s had for the past 30+ days. It almost feels like a game of psychological warfare where he’s trying to make me crack, and all truth be told, he’s succeeded. I’m worn down, my will is broken and I’m more than ready to divulge any and all information I might harbor. Let the interrogation begin!

The last time I checked in, Yohan had been cleared to walk and start PT. His progress has been molasses slow since then. Why? Pressure sores. After a week or two, these sores heal, and as soon as he’s given the green light to resume walking, they break open again. It’s so frustrating!! After surgery and casting, all his hard-earned calluses dropped away, leaving fresh, pink, baby skin. Problem is –  Yohan is 23 years old and he’s totally over the baby skin stage. Like, WAY over.

baby

He’s had a shoe insert made to relieve the force on the pressure spots. And we’ve been back and forth to San Francisco 3 times in the last month to have the orthotic modified, but we are not there yet. Just this morning, that stupid sore reopened, which means one thing: Stay off the foot and get back on crutches. UGGGGGHHHHH.

Yohan will be seeing Dr. Pfeffer next week for a consultation and we’ll go from there. If we can’t take the pressure off that one spot, he may need another procedure on that foot. No way are we delving into the second foot surgery until he is 95% ambulatory with the reconstructed one. We do not know how long that will take and grad school applications have been submitted for a fall 2017 admission.

Yohan does not like surprises. He yearns for certainty and security. We all do. How do you plan your life when you can’t really plan your life? Message from the universe: Shit happens and you just have to go with the flow. You make the best of what you’re given and deal. It’s definitely not optimal, but what choice do you have? CMT sucks.

life

Question: Dealt with foot sores? Share how you managed them!

8 thoughts on “Just an FYI: CMT SUCKS

  1. Sitting with his feet down so much of the time is likely not improving the healing of the sores. He should be elevating the foot above his heart more frequently (take a break from the computer ever hour or so for a half hour reclining with it elevated). Also, is he doing any push pedal exercises or leg lifts? Good circulation is key for quick healing and we CMTers have to work to get circulation flowing more than most.

    Avoiding the pressure sores is trickier. I presume he’s taking things slow when cleared to bear weight – meaning he starts by bearing 20% of his weight with crutches, then after a week adds 10% more each week. Once he gets to 75% weight bearing he can then ditch the crutches and move to a cane. It’s a royal PITA and requires enormous patience, but it’s better than constant wounds! The gradual weight bearing should help the skin to toughen over time and make him less prone to sores.

    -additionally, he’ll battle swelling in that foot for years to come after any amount of time on his feet. He’ll need to take things slow and make sure he takes breaks to elevate when he can. If he’s sitting his foot should be elevated. Time to invest in a laptop, or better yet a tablet with voice to text technology!

    Depending on his grad school plans he may be able to get a jump on his reading. He can do that while elevating his foot. 🙂

    I’ll say this: He’s lucky to have people who can help care for him. I had ankle reconstruction the spring before I left for graduate school and was never so thankful to have my mom around to care for me. 🙂

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    1. Thanks so much for all the good advice.
      I guess I hadn’t thought about the circulatory issue and his positioning. I’ll discuss that with him this morning. And I like the idea of gradual weight bearing. Brilliant. Sometimes we get so stuck in one situation it’s hard to see out and think of solutions. Great feedback and thank you so much!

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  2. So sorry Yohan is having post-op complications. You know I am no stranger to those myself! But everything Kate said above is just about all you can do. Depending where these sores are, the dr should/might have better solutions. But yes, swelling has always been a problem for me post-op too. Drink TONS of water, limit salt (are those chip bags in the picture?), and elevate the legs above the level of the heart. Also massage beginning at the foot and working toward the center of the body (my PT was SO HELPFUL with this to move swelling out of the foot).
    (Also, limit soft drinks–look at the labels for sodium content; hidden salt!)
    Best of luck to you both

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    1. Hey Joyce, thanks for the encouragement and pearls of wisdom. He is currently sitting on the couch, foot above heart. Feels like we are going backwards, but it really is a forward process. I like the salt recommendation, too. All great advice. Love you, e

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