It's been 5 years since my 3rd open-heart surgery and I've been thinking a lot about the importance of sharing with younger Truncus patients what normal might look like for them in their 40's. I also feel compelled to educate people outside, or on the periphery of, the CHD community about the long-term effects of living with a CHD. I turned 45 this year and was recently told by a geneticist that I am the oldest Truncus patient she had ever met. There aren't very many of us over 40 and no one really knows how our repaired hearts will hold up over time. It's scary not knowing what the future holds, especially since we have come to expect one unavoidable surgery after another. As the years go by it becomes harder to recover from surgeries and surgical procedures. For many of us, chronic and worsening PTSD becomes more and more of a problem in our daily lives and, additionally, our lists of diagnosed physical issues continue to grow. Despite all of this, we fight to get the most we can out of life. Only the people who are closest to us really know how much we struggle. I would like to change that by increasing understanding and spreading awareness about what life is really like at my age with a CHD.
In addition to my heart issues I also live with Fibromyalgia, Irritable Bowel Syndrome, Interstitial Cystitis, Bilateral TMJ Disorder, Hypothyroidism, PTSD, nerve damage and ribcage pain. Exhaustion is my constant companion. I am literally always tired, to varying degrees. From the moment I wake up in the morning and throughout all my days. I have learned to push that exhaustion aside and I often keep going until my brain and body start to shut down. At that point I usually end up having to spend anywhere from a day to 3 or 4 days doing as little as possible while I recover. I also live with pain. Distracting myself from it has become an ingrained habit, until it gets too bad to ignore, at which point I have to rest and simply wait to feel better again. The muscle and joint pain from Fibromyalgia, the nerve pain from surgical trauma, my exhaustion, and some of my other issues, are all exacerbated by stress. Unfortunately, I have become increasingly sensitive to stress as I've gotten older. The Fibro symptoms are also made worse by rainy weather. All of this has made it difficult to function as an independent individual. I am not able to support myself financially and there are so many things I'd love to do but can't. There are days when I can sort of keep up with normal activities, such as socializing, school and chores, but I also have days when I feel so weak and exhausted that just lifting my arms to comb my hair is almost painfully hard to do. I am currently attending CSUS part-time and hope to complete a BA in Psychology within the next 2 years, but I don't know if I'll ever be well enough to work the amount of hours I would need to in order to support myself. Going to school part-time is all I can handle. Walking to and from my classes on campus is challenging. I struggle with shortness of breath, fatigue, and pain while trying to get around. Paying attention in class and doing homework can be grueling too, but the mental stimulation I get from going to school means a great deal to me and I feel that it's worth the effort.
In addition to the aforementioned symptoms I am also dealing with side-effects of some of the medications I take. The most problematic of these is all the damn peeing that comes with daily use of diuretics. Because of permanent damage to my heart, resulting in Congestive Heart Failure, I will need to take diuretics for the rest of my life. I can never be far from a bathroom for long and that can be frustrating to deal with. I also have to follow a low sodium diet and make an effort to restrict my fluid intake. Besides the diuretics, I take several other medications, including 12-14 potassium pills a day which can cause nausea and stomach cramps.
All these difficulties might be painting a rather grim picture of my life at this time, but it's not all pain and struggle. I have close friends and family who mean the world to me, I love spending time with my kid, I manage to enjoy school much of the time and I am often content or even happy. I have learned to take my challenges in stride, for the most part. Sure, there are bad days, sometimes way too many, but the good days make life worth living. It's also important to remember that, while Truncus patients have a lot in common our bodies are still all somewhat different and not everyone with Truncus will be facing the issues I live with when they get to their 40's. I hope that the future keeps getting brighter for all of us as modern medicine advances. In the present, my greatest coping skill is gratitude, for everything I've been able to do in the past and everything I am still able to do today. I count my blessings over and over and consider myself lucky to have them.
