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24 Mar 2019
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TOPIC: Teejay's Journey - 23 y/o Male with PE

Teejay's Journey - 23 y/o Male with PE 6 months 2 weeks ago #8752

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Little bit of background: I first noticed my PE at around 11 years old. Doctors always told me that I'd "have to be really vain to get surgery to fix it". I was constantly dismissed when I brought it up so I just ignored it and eventually kids stopped pointing it out. Was diagnosed with asthma after a bad case of walking pneumonia when I was 14 and I switched pediatricians and was put on inhalers and steroids and all sorts of things for it. My pediatrician seemed to think I wasn't trying hard enough when using the spirometer and wasn't happy with how my breathing didn't improve much. Fast forward a few years and I got a chest xray for another respiratory infection (I've had pneumonia twice and bronchitis twice) when the doctor at urgent care told me the xray techs wanted to know if I knew I had PE. Said yeah and asked if I could do anything about it and he said the bit about vanity again and that mine was "mild". Didn't think my symptoms of poor circulation, breathing problems, seeing my own heartbeat, exercise intolerance, difficulty concentrating, difficulty "speaking from my chest" aka voice resonance, recurrent lung infections, and so on were related to my PE until I started doing some googling of my own in adulthood. Turns out during my PFT for Nuss the tech told me I don't have any signs of asthma and that my breathing was more consistent with someone who is affected by their PE. Go figure. I planned on putting off this surgery for a couple years but another surgery regarding my chest (I'm a trans man and require what is essentially a double mastectomy) would have the best results if I got Nussed first and I figured since I'm moving out of my parents' house this year I should get Nussed while I'm still with them.

I have done all of my tests including metal allergy (they double tested for nickel because I thought I was allergic but all came back negative) and I have a consult with Dr. Obermeyer at CHKD next week. All in all from the time I started trying to contact CHKD to now it has taken me four months to get a consult. In part because of my schedule but mostly due to incompetence of my PCP. The office I go to is comprised of mostly residents who not only have no experience with PE but also apparently don't know how to do simple things like request labs the proper way and have the results sent to CHKD. I learned a lot just trying to help the process along. Took two and a half weeks to even get in contact with CHKD and after I did I was told I'd be emailed and mailed information and it took some follow up to finally get an email packet. I'm not too upset. I know organizing a major surgery takes time but I do want to share this information with the forum.

Don't know my haller yet but my CT scan says I have "moderate" PE and all other tests meet my insurance requirements. Don't know yet what my financial obligation will be so I'm trying to prepare myself for the shock. I know I at least have to pay my surgery deductible and will most likely have to pay anesthesia fees based on my past experiences. It seems impossible to find exact numbers when researching financial obligations with insurance so I'll be sharing my experience with that here as well.

I chose Dr. Obermeyer after seeing on this forum that he has a lot of experience with adult patients and was trained under Dr. Nuss at CHKD. He's also in my insurance plan although I will note that Dr. J is too but CHKD is a little over an hour from my house as opposed to a plane ride away and that's what sealed my decision. I'm excited to get Nussed but still am unsure about how to broach the topic with my new employer as I've only been working there for just under a month. I'm waiting until my consult and to see when I would be able to schedule a surgery date before I bring it up so that I have all of my ducks in a row. I'll update after my consult.

Excited to have metal bars in my chest and excited to finally feel comfortable in so many ways. I'll post pictures at a later date.

Teejay's Journey - 23 y/o Male with PE 6 months 1 week ago #8789

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On the way home now from the consult with Dr. Obermeyer. The scheduler was out of office so I’m waiting on her phone call. While everything is fresh, here is my takeaway:

Dr. Obermeyer is extremely knowledgeable and thorough. The consult itself was about 45 mins maybe 30 mins at the very least of facetime with the doctor. There were also photos, a 3d scan, some paperwork and just some downtime to wait around. He took his time explaining exactly everything he does and why and what my options were. He answered all of our questions and was very realistic about the outcomes. I expected this going in as well.

I found out that after years of doctors writing my case off as “mild” and not worth looking into correction, and a CT that was read by Obermeyer himself as about a 4.something Haller, that I actually have pretty severe PE. The CT was done wrong and they told me to breathe in. It should have just been passive breathing. So my real Haller he estimated to be closer to 10.something. Which was a not-so-surprising-surprise. Makes me mad at all the doctors who dismissed my concerns. Obermeyer says my ribcage is very asymmetrical and that looking at my CT it’s like looking at two halves of a ribcage from two different patients. Because my indent goes all the way up to my collar bone and I’m so asymmetrical, he says we cannot achieve an ideal outcome so coupled with scarring my results won’t be great cosmetically but that it’ll be better than it is now. He won’t be able to do anything about my rib flare and it may get worse. He also thinks the upper chest indent is there to stay as well. And because my ribcage is two different sizes, I’ll always be asymmetrical. But really anything is better than my current situation.

He said I’m looking at 3-5 days in hospital because it’s severe and that it’s going to be more painful than average most likely. We talked about recovery time and limits and work and all of that.

He’s having me use an incentive spirometer 20+ times a day and then the week leading up to surgery 50-100x a day to prepare my chest.

All in all he was very realistic and I’m very happy wth my choice. Despite the unlikeliness of me having great results I do want to move forward with Nuss. (Also he mentioned vaccuum is really not even an option for me)

Teejay's Journey - 23 y/o Male with PE 6 months 1 week ago #8792

Thank you for sharing, I can sympathize.
Had symptoms my whole life, 4.2 Haller Index with sternal manubrium slightly compromised, still every doctor dismissed my symptoms.

I live in a country where medical structures, especially the organization and scheduling parts, are in really bad conditions or not working at all (wich is sad, since we have topnotch universities and may be an excellence in the whole world...) so I'm currently losing many months just to schedule various medical exams that my surgeon request me to re-do.

Don't feel alone, your situation seems very typical :)
I've even been straight out offended by doctor dismissing the fact that I am a serious agonist athlete and my symptoms slowly worsened to the point of almost transforming me into a sedentary person (he believed I am a tabagist and alcoholist and never actually exercised my whole life; I really believe doctors should be psychyatrically checked every 6 months because it's a real shame that a person with a health condition should be treated that way).

Teejay's Journey - 23 y/o Male with PE 6 months 1 week ago #8793

teejay wrote: The CT was done wrong and they told me to breathe in. It should have just been passive breathing. So my real Haller he estimated to be closer to 10.something. Which was a not-so-surprising-surprise. Makes me mad at all the doctors who dismissed my concerns. Obermeyer says my ribcage is very asymmetrical and that looking at my CT it’s like looking at two halves of a ribcage from two different patients. Because my indent goes all the way up to my collar bone


That's really, really shameful from all the doctors who previously dismissed you. Really that's absurd, they should be ashamed, how could your internal organs properly work? It had to be obvious to them.

I hope you will find a satisfactory outcome, I wish you best :)

Teejay's Journey - 23 y/o Male with PE 6 months 1 week ago #8796

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Thanks! Good to know others have similar stories :)
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