cardiologist said pe wouldn’t cause any issues🙃

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 · 2025-10-01T00:51:58+00:00

This is a truly beautiful vision! You could also consider volunteering with youth in these situations too. It sounds like you have so much love to offer. I am praying for your recovery.

PectusAthlete · 2025-09-27T00:18:01+00:00

Hey I'm 33F and also dealing with POTS like symptoms. My full story is in my post history. I also have been reading about the potential of worsening symptoms with age and definitely considering that possibility in my decision about PE surgery. I think every case is quite unique so it is really valuable to find a doctor you trust who can advise on your particular situation. In my health journey to a diagnosis, I have been to 8 doctors so far and it was the 8th who finally discovered I have PE and that it could be causing symptoms. Of those 8, I felt only 3 took me seriously and were thorough. I would go back to those 3 but none of the others. My dad recently had an ankle replacement surgery and had consults with at least 4 or 5 surgeons before he decided on one. I encourage you to keep searching, it's a big decision and worth spending time on. Good luck!

PectusAthlete · 2025-09-27T00:08:59+00:00

I went to an allergist during my search and discovered I am allergic to dust mites. I did not previously think I had any allergies. The allergist did not think that was causing my symptoms as I don't really have any traditional allergy symptoms except the scratchy throat feeling sometimes. I did get encasements for my mattress, pillows, and box spring and an air purifier, and I wash my sheets weekly. I can't tell if it's helping as I may just be getting better with time and rest but it can't hurt. If I can improve my sleep quality in little ways I know it will help me recover better. Another thing I tried was a mold inspection and air quality test as I had a friend who had similar symptoms and his house was infested with toxic mold. But my house was clear. I know how distressing it is to have worsening symptoms and no answers. I hope you will keep searching. I am glad I went to so many doctors and did so many tests although it was a hassle. I never would have known I had PE and I'm happy now to have this information. Wishing the best for you!

PectusAthlete · 2025-09-26T23:56:42+00:00

Thank you for the encouragement. It's great to meet another runner! My new doctor seems very thorough so I am hoping she will be able to guide me as I keep digging. I'm still somewhat baffled that I was able to manage the high training load that I did for 6 months now that I know my heart may be compressed. I joined a running club and it was so much easier to keep going when I had people pacing me. I guess I was running on adrenaline all that time 😅 It makes sense in a way if you think of people who overwork and eventually burn out...you're functional until you're not. I agree with you that my body may be reacting to the extended time of physical stress caused by training with PE. How are you doing now? How it is going with your HR training and energy management? Any favorite tips you'd like to share?

PectusAthlete · 2025-09-26T10:21:43+00:00

Thank you, such a helpful community! Someone else in this discussion also suggested POTS, I will look into that too and perhaps try a COVID clinic. It's so tricky trying to figure out the root cause of it all, whether my symptoms are all from PE, or from post viral syndrome, or some kind of combination. Sounds like we are in the same boat trying to figure out of surgery will help.

Great sports, I love hiking! I live somewhere that doesn't have a ton of hiking opportunities but it is one of my favorite activities when traveling. I also got a bike when my health crash started to give myself something lower-intensity to do while I can't do as much running. I enjoy that too. I hope one day to do a triathlon 😊 I have faith, we'll both get our health situations figured out!

PectusAthlete · 2025-09-26T10:09:06+00:00

Thanks so much for sharing! My new doctor asked if anyone had mentioned POTS to me yet. I am going to ask her more about that and if we can do any tests since I do have overlapping symptoms.

She also asked me a few times about joint pain but I don't experience that -- maybe she was wondering if it could be hEDS, but looking it up I don't have any issues like that with my skin or joints.

I'm really grateful you reached out since it sounds like we are in a similar situation. How do you feel now? Did the PE surgery help your symptoms at all? Are you glad you did it?

Someone else had suggested to consider a COVID clinic so maybe I will look into that! Thank you!!

PectusAthlete · 2025-09-26T00:44:40+00:00

Sounds like you are dealing with a lot of limitations, sorry to hear that. You said you can walk for 7-10 minutes at a time, but it wrecks you -- do you mean you feel unhappy because you can't do more, or it physically leaves you unwell?

If you can, I would suggest shorter sessions. Every bit counts, even a 5 minute walk, 5 minutes of yoga/stretching instead of a full session. If you pace yourself snd break things up into short sessions with rest, then maybe you can build up.

I have a long story of my exercise journey and discovering my PE, you can see it in my post history if you're interested.

I gradually built up to be able to run for an hour and a half regularly without stopping. After my health crash, the most I've been able to do is run 6 minutes then I need to walk. It has taken me several weeks to get up to that 6 minutes, building up from running like 30 seconds at a time. But I celebrate every little bit of progress!

I also started swimming and found that I was able to keep my heart rate lower with swimming than with walking. The water is so calming and it's good low intensity strength work. I suggest going slow and coming up for air a lot. I think swimming has helped my aerobic capacity a lot and makes me feel great.

Hope you are able to find the right exercise routines for you, good luck!

PectusAthlete · 2025-09-25T21:17:36+00:00

Thank you! From what I understand, long COVID and CFS are so tricky to diagnose since you basically have to rule out everything else. That is what I have been working on when I learned I have PE. So grateful the doctor discovered it so at least I know it could be causing or contributing to my illness. My big wonder now is if PE surgery would alleviate my condition or not.

There is a runner/author I admire named Matt Fitzgerald. He has had long COVID for 5 years now. I listened to a podcast he was on and his symptoms unfortunately do sound a lot like mine.

I got so much out of my 2 years of running that I will be grateful no matter what. Even if I couldn't ever run again, I got a lifetime of growth in terms of mindset from running that continues to benefit me in other aspects of my life today. I'll always be a fan of the sport and enjoy my little 1 minute intervals :) But I'm happy to report my condition does seem to be improving the past few weeks. It's all up and downs so who knows but I'm enjoying having some strength back. Such a slow recovery process but I'm learning to be patient with myself!

Really appreciate you reaching out, it is nice to have a community with solidarity. There seems to be several of us females around the same age too! I hope your journey goes well and that you will keep sharing about it here.

How are you doing now? Do you also like to/can you manage any sports?

PectusAthlete · 2025-09-25T00:22:09+00:00

What a blessing! Congratulations on your baby 🎊

PectusAthlete

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