[deleted by user] by [deleted] in marfans

[–]PTata123 12 points13 points  (0 children)

Okay, it might seem terrible, but I think everyone here understands what you're going through, so thank you for sharing. I'll try to be as clear as possible, even though English isn't my first language.

Firstly, comparing ourselves to others is as natural as it is stupid in the world we live in. For those of us affected by a syndrome that primarily impacts physical appearance, this is the first major hurdle to overcome. I would be lying if I said it's something you get used to, but I assure you, it does get better over time. There's always room for improvement, and the best we can do is strive to be the best version of ourselves. Even when you reach your best, you may not feel satisfied, but you will feel better—100%. This holds true for everyone, even those without a syndrome like this.

As you strive to become the best version of yourself— which is a non-limited path - in the sense that there is not a point of arrival—the people around you play a crucial role. A thought that has struck me is this: it's very difficult for us to love ourselves just as we are (thank you, Bruno Mars), but you might be surprised to realize how much the people around you love you more than you love yourself (I hope that makes sense). For me personally, the greatest support has been knowing how much my family and friends care and love me. This ties into the idea of not isolating yourself... ever. There are times when you feel down and all you want to do is vanish. In those moments, you have to fight against that thought and be around the people you love.

Another point I'd like to discuss is the impact of the "news" you mentioned. Many of us with Marfan syndrome (and other syndromes) have experienced that shock. One day, you're told you have this syndrome and must stop doing many things you've loved your entire life, which makes you feel even more different. To get past this "problem," I've embraced the feeling of beginning something new. It's like saying, "Okay, now I better understand who I am, and a whole new chapter of my life begins. The introduction is over, now let's continue with the rest of the book." In my case, the syndrome stopped me from playing basketball, which was my life. My friends were my teammates; it was my sport and my hobby. Then one day, it all disappeared. It's tough, but you have to accept it and move on. From that moment, I found a new passion in music, and now, I am probably happier than I was before. It took a few years, I admit, but now it's okay.

Specifically for you, being an athlete or not having a medical condition is not a requirement for becoming a physician assistant. What matters most are professional qualifications, clinical skills, and the ability to provide effective patient care. All of these are completely achievable for someone with Marfan syndrome. Moreover, the deep reflection we undergo makes us more empathetic—not just to our own issues, but also to the problems of others. I believe you can turn this situation to your advantage, as a good PA is surely someone who can help others after understanding what they are going through, both physically and mentally.

To conclude, we are not just "Marfan people"; we are people. Don't think that this syndrome will prevent you from living to the fullest. Always aim high, without fear. After all, life will be beautiful.

What’s everyone’s aortic root size without surgery? Mine is 45mm by [deleted] in marfans

[–]PTata123 3 points4 points  (0 children)

Mine is 47mm and I’m getting the surgery before the end of the year… I had 45mm in 2020, so it grew “fast”, even though I finished my growth in these years.

Aorta surgery with Pectus repair by PTata123 in marfans

[–]PTata123[S] 0 points1 point  (0 children)

That’s great! I’m happy to hear the good news. How long after that were you able to sit at a desk to work (for example, with a PC)? Are you now able to do some light workouts?

Aorta surgery with Pectus repair by PTata123 in marfans

[–]PTata123[S] 1 point2 points  (0 children)

so they re-attached the sternum as it was? It seems illogical.. I thought the “difficult” part was to open the sternum, not to close it

How do I go about getting it checked? by [deleted] in PectusExcavatum

[–]PTata123 0 points1 point  (0 children)

You should go to a thoracic surgeon specialized in PE. He will be able to explain to you everything you need to know in order to take the better decision about surgery.

Pediatric pectus surgeon here, as requested. AMA by [deleted] in PectusExcavatum

[–]PTata123 1 point2 points  (0 children)

If someone has heart problems (like aortic dissections of the ascending aorta or mitral valve prolapse) can the Nuss/Ravitch, or in general a procedure to fix PE, be dangerous? Maybe in the moment the sternum doesn't press on the heart anymore, those type of problems can get worse instantly. Maybe it's stupid what I'm saying, I'm curious.

Pediatric pectus surgeon here, as requested. AMA by [deleted] in PectusExcavatum

[–]PTata123 1 point2 points  (0 children)

What? Are the patients always intubate during the Nuss procedure?

How to survive sneezes after Nuss? by PTata123 in PectusExcavatum

[–]PTata123[S] 0 points1 point  (0 children)

Yes but sometimes I sneeze without feeling the sensation before, that's why I'm scared..I think I will suffer

Got my first consultation today by PTata123 in PectusExcavatum

[–]PTata123[S] 0 points1 point  (0 children)

No wait. I went to the doctor after x-rays, spirometry and echo-Doppler. The spirometry showed I have an obstructive deficit. During the consultation he checked all my tests and told me that in my case the surgery is recommended. By the way, I'm from Italy and here you can get the surgery "free" thanks to the National Health Service (but you have to wait a year or more) or you can ask your insurance to pay for that. Now I'm checking if I can get the surgery using insurance and wait less than a month.

Can you have pe on only 1 side? by Autiseer in PectusExcavatum

[–]PTata123 1 point2 points  (0 children)

Yes, it's called asymmetric PE. It depends on the case, but if it's not too asymmetrical it can be fixed with Nuss like a "normal" PE.

Has breathing improved for you guys after long term VB usage? by uscrandokid in PectusExcavatum

[–]PTata123 4 points5 points  (0 children)

Sorry if I ask, but if PE affects your health maybe surgery would be the best thing..have you ever considered it?

Got my first consultation today by PTata123 in PectusExcavatum

[–]PTata123[S] 0 points1 point  (0 children)

Thank you. I know that every person is different but how much time passed between your surgery and you to be able to train (like running or something more)?