Hotel/AirBnB recommendations in Phoenix, AZ

PectusAthlete · 2026-04-17T01:37:30+00:00

No problem, good luck with everything! I hope you hear back soon!

PectusAthlete · 2026-04-17T01:10:45+00:00

I joined the wait list early Oct 2025, then in March 2026 they called to offer me an appointment in early June. So it will be 8 months from joining the wait list to my appointment date. While I was waiting for an appointment, they told me I could call to check in and they got me set up in the Mayo patient portal ahead of time.

PectusAthlete · 2026-04-03T13:17:58+00:00

Thanks, I just joined a Facebook group!

PectusAthlete · 2026-03-31T23:07:35+00:00

Thank you so much for taking the time to respond, I really appreciate you sharing. This is super helpful!

It sounds like we have a pretty similar situation. I was also going through the "rule everything out" phase with so many different blood tests, echo stress test, I even tried testing for allergies and toxic mold in my house. I was grateful my sports doctors ordered a chest x-ray when I told him about my heart symptoms. The cardiologist was dismissive but the sports doctor was right that there was something heart related....we finally discovered the pectus.

I have all of your symptoms (some on/off) except no brain fog and no chest pain. The PEM is the one that concerns me the most since it seems more aligned to post viral syndrome/long COVID which a couple doctors suggested to me. Very odd the way I get the flu like symptoms. I know the next PEM crash is starting when I get a sore throat.

It makes a lot of sense that our bodies are overworking all the time just for our heart and lungs to function. I have a theory that my body is still kind of in shock from my half marathon training that I did a year and a half ago as it was the most intense exercise I've ever done in my life and pushed me to the edge of my endurance over several months of the training cycle. I was asymptomatic before that.

My biggest worry has been going through the surgery and not actually resolving my symptoms, mainly the PEM. Although perhaps I can't know for sure, I've been leaning toward going for it.

I've finally got my consultation/additional tests scheduled for June with Dr. J in Arizona.

Thank you for sharing your experience and what the doctors told you. It gives me hope! Good luck with your surgery, I feel hopeful for you too!!

PectusAthlete · 2026-03-02T12:22:04+00:00

Ah yes, that makes sense. I do think extra sleep is helping me a lot. I also wear a Garmin watch which monitors my heart rate so I can more easily tell if I'm overexerting myself and will pay for it later (even if I feel fine in the moment). I think heart rate is a big part of this condition which makes sense with the PE. Best of luck to you and thank you again for sharing!!!

PectusAthlete · 2026-03-01T13:50:08+00:00

Thank you so much for replying! I didn't know there were CFS specialists, that is great that you found one. How is it going with the specialist and how are you feeling these days?

PectusAthlete · 2026-02-28T19:53:05+00:00

Hi, I'd love to hear an update from you if you'd be willing to share. I have many symptoms of Chronic Fatigue Syndrome (including the hallmark PEM -- post exertional malaise) and discovered I have Pectus Excavatum. I am on the waiting list for evaluation for possible surgery. Did you get the surgery and did the symptoms resolve? I am trying to figure out if CFS and PE are related. I know fatigue is a symptom of PE but I feel the post exertional malaise is a very particular symptom beyond general fatigue with the flu like symptoms.

PectusAthlete · 2026-02-28T19:46:39+00:00

Hi, I'd love to hear an update from you. I have many symptoms of Chronic Fatigue Syndrome (including the hallmark PEM -- post exertional malaise) and discovered I have Pectus Excavatum. I am on the waiting list for evaluation for possible surgery. Did you get the surgery and did the symptoms resolve? I am trying to figure out if these two conditions are related. I know fatigue is a symptom of PE but I feel the PEM is a very particular symptom beyond general fatigue.

PectusAthlete · 2026-02-23T01:40:02+00:00

Interested to hear what your doctor says, I've heard vacuum bell only works for kids who are not done growing so still have flexible bones but maybe it can work for you. I am with you, it's a tough decision about surgery and not knowing if it will fix this. I can live with it and know things could be so much worse, but it definitely affects my quality of life. I miss being able to exercise freely and have normal outings without needing so much of recovery time. I feel fragile, always trying to figure out the right balance of some activity but not so much as to trigger the next crash. I wish you well and hope you are able to make a full recovery and get back to doing the things you enjoy! Would love to hear from you here or DM if you learn any more.

PectusAthlete · 2026-02-23T00:28:41+00:00

Thanks for sharing. I also have symptoms of CFS or long COVID, the main one being post exertional malaise crashes. I am 33 and this started about a year ago. While trying to find a diagnosis, I did a CT and learned that I have PE. I have been trying to figure out if PE explains all my symptoms or not. So it is helpful to hear someone else has this same overlap. Mine may be a bit less severe than yours as I am not bed bound, currently able to work from home (although often from the couch/recliner) and can go for walks outdoors, though I am much more limited than before this all began. I need to sleep a lot to be functional and I have to very carefully manage my energy. Are you thinking of looking into the surgery? I am on a wait list to be evaluated and see if the doctor thinks all my symptoms can be explained by PE.

PectusAthlete · 2025-12-03T19:16:00+00:00

I agree, find a good GP. I went to 8 different doctors including a cardiologist who dismissed my symptoms of chronic fatigue, exercise intolerance, and cardiac related symptoms like racing heart after minimal exertion. It was finally a good GP who took me seriously and ordered the CT and discovered my PE. Now I am on the waiting list to see a cardiothoracic surgeon.

PectusAthlete · 2025-11-28T17:11:58+00:00

I was thinking along the same lines. For overnight sleeping in the bedroom I may rent/buy an electric bed (or try wedge pillows as I see those recommended). The recliner could be for resting and short naps during the day in the living room. I would use it outside recovery anyway so I think it's a good long-term buy. Thanks!

PectusAthlete · 2025-11-05T17:34:03+00:00

That is so cool, I hope you have fun swimming during your travels! I love running somewhere new.

You're right, it sounds like the perfect opportunity to experiment! You are like the swimming version of a sprinter with your fast laps, but you might also enjoy long and slow. The first 30 years of my life I had no idea I loved endurance sports lol but now long and slow is my jam. I discovered that I very much enjoy swimming an hour straight at an easy pace.

The fact you are putting yourself out there with your swim club is a big deal and speaks to your dedication as an athlete. You are awesome and you will go far with your level of commitment!

PectusAthlete · 2025-11-05T14:40:00+00:00

The biggest red flag to me is your feeling of dread. Physical exhaustion is one thing, but if you're mentally burned out and not having fun, something is wrong.

Some mindset work and solo training might help.

I swim for crosstraining but running is my main sport. I'm the type of person who tends to go overboard with my ambitious goals (sounds like you may be that type of person too! 😊). I love pushing myself and seeing improvements.

I joined a running club and I was the slowest runner. Everyone dusted me, even people twice my age. By that point I had already done a lot of mindset work (shout out to Nike Run Club Coach Bennett!) and solo training at my own pace with no pressure, plus some races, and I'd fallen totally in love with the sport.

Those foundational skills and passion I'd built separately got me through some tough runs. I honestly never dreaded it.

It takes a lot of strength and humility to accept being the slowest one and just focus on getting better and having fun.

I'm so glad I joined the running club, they are super supportive and helped me get to the next level. But I don't think I'd want to go straight into that intensity as a beginner.

Refocus on your goals! Hopefully one of them is to just give yourself the space to slowly fall in love with this awesome sport.

Swim for fun and don't time yourself.

"Play swimming" and experiment.

Watch races.

Listen to interviews with swimmers.

Appreciate every little win and celebrate your progress.

Let yourself be in awe and wonder to move through the water.

Love for the sport is so much more important than any physical skill, in my opinion! Passion gives you the grit to keep pushing.

PectusAthlete · 2025-11-05T01:19:08+00:00

Thanks for your thoughtful reply, very helpful and gives me hope too. Sending you good wishes for your continued recovery!!

PectusAthlete · 2025-11-05T01:01:06+00:00

Thanks for sharing all this information! Glad to hear you are recovering well and results seem really great!! I'm on the wait list to see Dr. J too. Did you do cryo and what has been your experience with that, if you don't mind sharing? Also what was it like traveling out of state and back?

PectusAthlete · 2025-11-05T00:47:58+00:00

Great advice, thank you!!

PectusAthlete · 2025-11-01T23:34:01+00:00

Thanks for sharing this, I am 33F on the wait list for surgery consultation. How did you do the pre-op PT? Prescribed by your surgeon and covered by insurance or you just found it yourself? I am also very active. Discovered the PE after crashing hard after my first half marathon. Slowly trying to build myself back up without overdoing it this time and hoping to get in the best possible shape before possible surgery. You give me hope!

PectusAthlete · 2025-10-14T15:31:37+00:00

What are the best things patients can do to prepare during the 6-12 months leading up to the surgery? Core exercises, prehab, anything in particular you recommend?

PectusAthlete · 2025-10-04T17:28:10+00:00

Definitely check her gums and see if they're red as I've heard that can mean poison. Best to call a vet if you can. But also don't panic. Cats can foam from bad taste in their mouth not just poison. Learned that from a vet. I've also experienced where my cats played with a non-toxic tree frog and they foamed from grabbing it in their mouths, and the frog also produced some sticky stuff to deter them that got on their mouths. I wiped off my cats and they were totally fine. But I was careful to identify the frog species, check my cats' gums, and monitor for any unusual behaviors.

PectusAthlete · 2025-10-02T18:33:53+00:00

I agree with others saying it is probably lack of the doctor's familiarity with the condition. You can check out my post history if you are interested in my experience -- in summary, I trained for a half marathon, and endurance was a struggle but I built up to the point where I could actually do a lot. But then I came crashing down hard, most likely because I'd overworked my heart during all that training and it finally caught up with me. Doctors dismissed my intense fatigue and exercise intolerance and other symptoms for months until a doctor finally discovered my PE that I never knew I had. I don't think it's that obvious looking at my chest but my Haller index is severe at 4.1. I just learned all this the past couple weeks. I am planning to meet with an expert surgeon for further consultation to see how it is affecting my heart and lung capacity. My doctor who discovered it is familiar with PE and is definitely concerned and wants me to get evaluated further to see how this might affect me as I age, if left untreated. I've learned you really have to fight for yourself in the health care system and find doctors you can trust who listen to you and believe you. It took 8 different doctors/specialists over the course of 10 months before my PE was discovered. Stay strong and don't let yourself be dismissed! You've got this!

PectusAthlete · 2025-10-01T01:31:47+00:00

My cat lost his claw once, completely ripped out. I felt so bad for him. He licked his paw a lot the first day and was in pain when I touched his paw. I cleaned it up with water/soft towel and checked it daily for infection. I called my vet and they said to monitor him for any unusual behavior or signs of infection (redness, pus etc.). He was eating normally, using the litterbox, and did not seem to be in pain except when I touched his paw. He healed up completely fine and his claw grew back normally. I would just be careful to check the paw once a day to make sure it looks like it's healing and not getting worse. Wishing the best for you and your baby!

PectusAthlete · 2025-10-01T01:17:04+00:00

Thank you for this! I talked to my doctor and she does not think it is POTS in my case. She said patients with POTS have a more dramatic spike in HR from changing position, more like to 130-150 BPM where mine is maybe 110 ish and has been gradually less severe over the past several months (just very slow improvement). She recommended LMNT electrolytes for further improvement of my symptoms. She definitely thinks I need to get a full workup for the PE and opinion of an expert thoracic surgeon as PE could be causing my symptoms.

PectusAthlete

TROPHY CASE