Info. Please?

I have significant PE and would like to look into getting it repaired but am having a lot of trouble finding contacts to get started. I am a 31 y.o. woman so I need to find a Dr. that works on adults. This condition is starting to really effect my quality of life. I am having irregular heart beats, cannot find a bra that fits decently, and have never had any stamina though I have a very strong, athletic build and come from a family of very active individuals. It also hurts my emotional health because I have always been labled as "lazy" and its only been since the heart trouble started that I've realized that it might not be due to my will, but rather to my "squished" heart and lungs. I hope this support forum will yield some helpful info.
Catteeth Catteeth
31-35, F
2 Responses Jul 10, 2010

Hi Catteth,<br />
<br />
I am 45 years old and did not find out I had PE until I was 31. I started getting chronic pneumonia in my late 20's and still have a problem with it. At age 31 was diagnosed with a lung disease(bronchiectasis) and referred to a lung doc who told me it was caused by the PE. Last year I had surgery to remove a tumor on my thymus gland(below my heart) and wanted my chest fixed at the same time. My thoracic surgeon refused to fix it. I am recovered from that surgery now and started doing my own research. I have had pneumonia for 3 months now and meds are not working. I found Dr. Losasso in San Diego, he does the NUSS procedure on adults and I called them. I decided to go to my primary doctor and request the referral. Doctor listened to my chest and thought I had fluid around my heart. Then did an EKG in her office, which came back abnormal. Said I would have to have more tests to get the referral. My cat scan showed pneumonia. I am scheduled for PFT test and echocardiogram next week. Then go see a cardiologist and then back to the primary doc two days later. Almost all the doctors are completely stupid about PE and it is very hard to get help. My PE is SEVERE and I need the surgery so I will not stop until I get it. My referral is supposed to be in the process(I was told today). I called and had my cat scan films mailed to Dr. Losasso in San Diego. They will do a Haller Index when they get the films. Hope this helps to hear someone elses story. The frustation is terrible. I will keep pushing until I get this fixed!<br />
Mindy

Its been a while since I posted this:)
I met with Dr. Dawn Jaroszweski at the Mayo Hospital in Scottsdale, AZ in Jan. 2011. She is a CardioThoracic surgeon with EXTENSIVE experience and background with PE in adults. I was so excited to find her and I found nothing but really great info when I searched her on the internet. She did many tests the day I met with her (EKG, echo, cardio-pulmonary stress test, CT scan, etc.) and found that I had a very severe PE and that I would benefit from surgery.
She presented a really great case to my insurance companies and in Feb. she performed the Nuss surgery on me and did a great job! The chest looks better, the pain was reasonably managed... considering, and although I'm not all healed up yet, I do notice much greater heart capacity (hills are no longer daunting to walk up) and she even managed to get my rib flares to lay down better.
The misconception that people have had is that since I was good at coping with the symptoms so they weren't as noticeable, that somehow this surgery was supposed to give me "super-powers," and really I am just getting closer to functioning normally like they always have.
I agree that, "Almost all the doctors are completely stupid about PE." Dr. J really advocates better education about it.
I was lucky enough to be covered by 2 insurance companies. And my work was very suportive through it all!
This was a huge life event, but I feel it was worth it! I hope the people and organizations you are working with will get

Hi Catteeth-<br />
<br />
Your story resonates well with me. Until I was seventeen, I had pectus and it significantly affected my physical and emotional health. It wasn't until after I got surgery that I began to fully experience life the way I had wanted. Unfortunately I can't give you any info on a surgeon that will work on an adult, but if ANYONE has the guts to tell you that it's a cosmetic issue, you should tell them to screw off. Okay, well, maybe not - they're just ignorant. But when I was a kid that's what I was told and therefore I should not get surgery. <br />
<br />
Here's a good article describing the physical problems associated with pectus:<br />
<br />
http://www.ncbi.nlm.nih.gov/pubmed<br />
<br />
Note, you won't be able to read this without buying it, but your physician might be able to access it.<br />
<br />
Catteeth, I HIGHLY recommend that you get surgery. Because of your age, it's going to hurt like hell because your bones are already well-formed and won't much like to be moved around. But in the end it's worth it. Pectus is awful to live with, especially if it's severe, and the pain will only last for a month.<br />
<br />
Good luck! I know how hard it might be for you to get a surgeon who will work with you and to get your insurance to cover it. Take care!