When I had my open-heart surgery to repair my aorta back in the summer of 2014, I did not have many questions. I wanted the process to be over as soon as possible and I trusted that my surgeon, Dr. Craig Miller, and my cardiologist, Dr. David Liang, would be able to make that happen successfully.
I am grateful that they respected my wishes not to know much about the procedure itself, but, in hindsight, there are a few things I wish I had known in advance. I’m taking this opportunity to share the top five things that I hope can help those who are facing aortic surgery in the future.
Don’t Skimp on Comfort
To say that open-heart surgery is uncomfortable is an understatement. While hospitals try their best to provide comfort in such a tough time, nothing can beat the extra touches you bring from home to help you feel calm and secure. Whether it is your favorite pillow, fuzzy blanket, or simply a cozy pair of slippers, every little thing can make your time in the hospital a whole lot better. Also, make sure that you bring a robe and pajamas that open in the front. The ability to button in the front makes the process a lot easier to deal with. Wires, bandages, and discomfort from the new scar can all be a little more bearable with this small adjustment. Moreover, your own pajamas are guaranteed to be one hundred times more comfortable than a hospital gown. These seemingly small comforts can go a long way when you are in a hospital. They bring a sense of normalcy to an otherwise not so normal situation and can help relieve your body from the trauma it has endured.
Your Relationship with Food May Change
This was a big one for me because I love food. However, after my surgery, not only did I lose my appetite, but also food tasted different to me. For example, one of my favorite flavors of Gatorade is melon (do not ask, I cannot explain why) and my mom brought me some to have in the hospital. I was so excited until I took a sip and could not bear how sweet it tasted all of a sudden. It was horrible! Foods that I normally loved were either too sweet or too salty. Only a few foods actually tasted good. I believe I have now eaten enough plain applesauce to satisfy me for the rest of my life! Even when my taste buds got back to normal and I got my appetite back, I got full much quicker than before. I was eating less even though I needed more to keep my strength up. It took a while to get back to a healthy eating style, but I knew I had to keep trying. So if you are a foodie like me, hang in there!
Be Patient with Your Recovery
Since everyone’s recovery from surgery is different, your healthcare provider can only give you guidance based on their experience with other patients. This is helpful in the broad sense, but you can’t expect an exact timetable as to how your body will recover. Knowing what to expect in terms of wound healing, fatigue, when to start physical activity, nutrition, and sleep is where patience becomes essential. Do not push yourself too hard. The trauma from surgery takes a toll on the body and each body responds to that trauma differently. It is easy to get caught up in the idea that you “should be feeling better by now.” The truth of the matter is there is no one successful way to recover. One day you can feel like you are feeling better and the next feel exhausted. That is ok. There is no use comparing your experience to anyone else’s.
Your Body Will Feel Different
One thing I noticed after my surgery was that my body felt different. I do not mean the way my body felt right after surgery (pain, exhaustion, etc.). What I mean is that after the initial trauma of heart surgery, your body will begin to feel better, but also different. I cannot put my finger on an exact way to describe it. When your body is used to feeling one way, then this big change happens to make your body work better, it cannot help but feel different afterward. The best way I can put it is that you start to feel your “new normal.” For me the “new normal” felt odd and slightly uncomfortable because it was not what was familiar. For a while, I did not even feel right in my own skin. I knew it was for the better, it just did not feel right. It took a while to grow into the fresh standard of living. Just remind yourself once again to be patient with the adjustment period.
Don’t Be Afraid to Ask For Help
The bottom line is that the recovery process following surgery involves a lot of trial and error and patiently allowing time for recovery to happen. You know your body best. Do not be afraid to voice your needs and preferences when it comes to your care. I began to feel like a burden during my recovery and even for a while after. I thought it was something I had to deal with on my own and just push forward. It was tough sometimes to remember that no one can know how I really feel until I talk to them. Take the time to talk about and experiment with what works for you in terms of care and comfort. Do not hesitate to tell your family or other caregivers, or call your healthcare provider, when things feel painful, if you notice any changes, or if you have any questions. Give yourself permission to talk about how you are feeling and rely on your support system. Recovery is not a solo endeavor.
* * *
Want to know more about life after aortic surgery? Join us for a Personal Perspectives Panel featuring Dominga Noe, along with three other young adults who have had aortic surgery: Victoria Falcone-Pawar (Marfan), Lauren Atherton (Loeys-Dietz), and Peter Donato (Loeys-Dietz). Dr. David Liang, a member of our Professional Advisory Board from Stanford and Hoag Hospital, will provide the medical perspective. The free webinar is on December 10, 7 pm Eastern. Register and pre-submit your questions here.
Dominga Noe was diagnosed with Marfan syndrome when she was nine years old. Originally from California, she began working for The Marfan Foundation in 2016 at its New York headquarters. Now she lives and works from Kansas City, MO as the Foundation's Marketing and Design Manager. A long-time Foundation volunteer, Dominga is the first staff member who has Marfan.