Update: It is with deep sadness I report that a close CHD Brother and friend, Ryan, passed away February 15, 2021 and will be horribly missed by many. He was an avid contributor to the CHD Legacy team and had many hopes to help expand our community, with projects in the making. A full dedication will be posted soon. Please keep his family in your prayers. Below is his unfiltered, passionate article (as CHD Legacy requests), to help teach others the reality of living with this unpredictable, terrifying illness -- Congenital Heart Disease.
Fly High CHD Brother.
-Stephanie Romer, CHD Legacy Founder
My name is Ryan Rusch. I am 28 yrs old and was born June 15, 1992 with Truncus Arteriosus in Chicago IL.
I’ve had about 6 surgeries all open heart (that may change one day with the current advancements).
The 1st was in 1992 at Univ. Of Chicago by Dr. Carp and his team, 2nd Surgery 1996 at Univ. of Chicago by Dr. Carp again the 3rd 2001, 4th 2007 and 5th -6th back to back 2013 (aortic repair and my regular replacement of my pulmonary valve “tissue”) all these were done at Advocate Christ Hope Hospital in Oak Lawn, IL.
My latest surgeries (3-6 were all done by the renowned gifted surgeon Dr. Michel Ilbawi and his team and as of last year I’m currently being seen by my Electrophysiologist Dr. Ira Shetty for my cardiologist she’s been a saint taking care of me since I was a young peds patient. I owe them everything and to do my best to make sure I take full advantage of having a not just a successful life but a fulfilling one. Prior to Dr. Shetty that my cardiologists were Dr. Alex Javoy (peds) and Dr. Joel Hardin (Adult CHD) who currently continues his Dr. duties in Tampa FL.
For the last 3 years I’ve been having severe arrhythmia issues on and off Aphib-Aflutter that have lead me to have 2 ablations (latest being of this last summer) to treat it and it did thanks to Dr. Zimmerman and his team he’s incredible. The start of the arrhythmias in 2016 was also put me in heart failure luckily in time I was able to once again bounce back. Due to the several surgeries my immune system has been compromised and I’m able to get sick or catch something often and sometimes severe that always needed medical help cause my body can’t fight it off at least not right away and with my background I’m at risk.
I've been on and off meds my entire life at the moment I’m on 6 medications and probably for the rest of my life but maybe not it depends on my progress. Kepra(Anti Seizure) suffered a (TBI) non heart related Cinetrine Buspirone (help Focus) Eliquise (Blood Thinner) Metoporal(Beta Blocker for Arrhythmias) Aspirine 81mg (Blood Pressure)
So far never been put on a diet unless Drs would put me on one sometimes for some hospital stays recovering from surgeries or another health issue. I been debating on putting myself on a heart healthy diet over the years and with the right help I may do that.
I’m a very active fairly athletic person I walk a lot and did sports in middle school (played tee ball, flag football, volleyball, basketball), H.S.(football managed, lacrosse played and managed, 1yr of managed basketball) and 1yr of managing college football. I grew up on the football sidelines for 9yrs straight 2003-2012 and loved every moment of it it kept my sanity and joy. Managing football taught me hard work ethic, organization, routine and the belief I can handle and accomplish things at a young age. I also played “16 inch” softball in our neighborhood leagues currently retired but a comeback isn’t out of the question. I’m so glad I’m as active as I want to be as I grew up and while I still can and its one of the majority of things that makes me feel not just myself/grounded but feel human.
Exercise wise besides cardiac rehab after PT I had tried out a cardio workout program once and it tested my endurance and it has declined a bit. I’d like to get a personal trainer one day so I can better my heart health and I still got something left in the tank.
As for job I do seasonal Security for events/concerts its been alright enough to get by. I tried the college route and it was fun but didn’t work out as much as I liked but still a fun experience. I’m close to finishing a film program to hopefully get me a job in the TV/Film Industry (a dream of mine) I’m a creative. I’d say have a plan B in case things don’t go your way but never stop striving for what you want.
I volunteer with the PCHA-IL when I can and our community of fellow CHDers, parents and volunteers. In my spare time I do have outside ideas and hopefully down the road plans that I’d like to spread to the US for Heart Awareness and Fundraising events. I’d like to do my best by leaving my mark or at least show that I tried for our Heart community.
I currently reside with my parents until I can save and move out its been tough but its nice to see my family as much but yes I’m ready to move.
Once again I’m a very active person like I said but my endurance has slowed a bit (heavy breathing, shortness and catching of my breath) but I still believe I got enough to my liking I just have to adjust to its level and sustain it. Heavy breathing like shortness of and catching my breath more than the average person.
My interests and coping mechanism is watching Football, Movies/TV, Comedy(performing improv) and being creative (writing/drawing, acting) all those things kept me wanting to live and persevere it all kept my darkest times quickly out of my mind while sitting bedside in the hospital. As a hobby I Ballroom dance when I’m in the mood I recommend it its fun and great exercise plus the ladies dig a guy that can dance ha.
As far as I’ve relationship status I’ve always been single but I hope that changes someday one of the tougher areas in my life I’m trying to work on, but I can’t wait to be a father(one of my other dreams).
Sex and intimacy is not an easy subject to deal with but it’s not that difficult either. Fellow CHDers our physical issues and possible emotional should not be an excuse for that other person to not fall for you or make love to you. We all deserve better so don’t settle. The physical act of sex is better with practice so like our endurance find your groove cause all our hearts are different. Most of all only do what you feel comfortable.
When it comes to family I have 2 supportive and understanding brothers we all enjoy movies and a set of loving parents that yes but heads with, cause I push the limits, but allowed me to do what I like and be who I want to be. They are all blessed to be healthy.
A quote that resonated with me was “tough times never last but tough people do – Robert H. Schuller”.
After all the dark dark times this CHD journey has brought me sometimes I wonder why I’m still around but I am and still kicking ass.
Advice To all my kid-teen CHDers:
LISTEN TO YOUR BODY! Its Ok to hate or be emotional about our CHD issues/concerns and seek out help, find your interests/hobby to your life they are great coping mechanisms it’ll may save you I know mine do. Don’t allow peer pressure EVER EVER EVER into your life you deal with too much your just adding negative energy into your life. You take medications for a reason only those meds and never give your meds to anyone. Don’t drink unless you ask your Dr first. Make sure you and your parents are on the same page bout what your health and life plan(s) are. Find a DR that will fight for you.
CHD Parents: You’ve done nothing wrong this is your beautiful health risk child, LISTEN LISTEN LISTEN TO YOUR CHD WARRIOR AND THEIR BODY.
Find a Dr. that will fight for your child/teen they deserve the best because our disease could care less about us, never settle. Your CHD warrior its life long and never fixed nor cured. They’ll probably sign health papers well above their age an time, keep them on their meds make it fun or find interactive ways to take them. Know this we love you but this journey is maybe the most scariest thing ever so make it comfortable yet honest with them. Make sure what your CHD warrior wants as a Health/Life plan and be on their side and same page. Your CHD warrior is a fighter but at times they may not have enough in them so pick them back up. Don’t have to put them in a bubble but make sure their out of semi harms way.
Adult CHDers get yourself the best DR team or care you can, keep as much negative energy or people out of your life as possible. Just enjoy your life, go get your dream job or a job you’re at least happy with, be a guide or help to younger CHDers.
My Doctors are the best cause they fight for me and been on my side since the start. I wished I had an organization/network of CHD awareness and people like me early on to help not feel as alone or different. Now, I'm thankful for CHD Advocate and Pioneer, Stephaine Romer for founding CHD Legacy to give CHD adults a place to tell it like it is and share how living with CHD REALLY feels, not what an organization wants us to say to "sound" good and healthier than we actually are. And, like she says, to have a place "to not be "PC" like all the other CHD stories out there because PC isn't our full truth." And I agree!
Feel free to contact me on Facebook - I’m very easy to talk to and have had several discussions with people in the CHD community on and about anything, I mean anything, we are all here to help one another.
Much Love to All
Truncus Arteriosus, 1992