My heart disease
I am Jesus Garcia and I have suffered from Marfan syndrome ever since I was born. Marfan syndrome is a genetic connective tissue disorder that affects the body’s ability to grow and develop. This disorder can affect many different parts of the body. The most common of these are the heart, blood vessels, bones, joints and eyes. The effects of this disorder vary from person to person. Some people have all those problems and some have only one. Unfortunately I got most of them which has made my life more challenging.
For most of my life it has always been about going to doctors appointments and getting treated for various health issues. My life has never been the ideal life because I was always trying to get through the small obstacles caused by my health problems. It wasn’t until the age of 13 when the real issues began. I had always worn glasses due to problems with my eyesight, but at this time I was diagnosed with retinal detachment and had to undergo 4 eye surgeries to fix that problem. This was tough for me at the time, but little did I know that was only the beginning to a series of back to back obstacles. During this time I had to struggle through the uncomfortable feeling that the surgeries had caused and also contributed to temporary blurred vision post surgery. Thankfully once my eyes healed everything I had experienced was worth it. Nevertheless, all of that stress was hard on me especially since I was so young.
The surgery that changed my life forever
Fast forward a year later, stress and worry wheeled their way back into my life. This time it was because of another problem caused by Marfan Syndrome, This time it was much more serious than my problems in the past. It had to do with my heart. After monitoring this my whole life, my cardiologist noticed that my aorta was growing larger than normal and he needed to do something about it soon. After much deliberation, the doctor believed it was best to surgically fix the problem before it would be too late. This was because if my aorta were to continue growing, the results could be fatal. At this point, if I wanted to fix the problem, surgery was inevitable.
There has always been so much worry prior surgery, but what kept me going was optimism and the belief that everything would turn out to be for the best. Months later, the day of surgery arrived and all my family and I could do was hope and pray for the best.
On the day after the heart surgery was completed my doctors realized that I was not waking up from the anesthesia. This was oddly strange since my recovery and waking shouldn’t have taken more than half a day. They ran tests on me only to find a blood clot in my brain very close to my spinal cord. Once this was detected it had to be surgically removed, thus adding more stress to my body. When they finally got this under control it was too late, The blood clot had already caused an overwhelming amount of damage to my body thus leaving me in a vegitative state.
This surgery changed my life completely. I was left with Locked-In Syndrome, which was devastating because it was as if i were dead. All of my organs collapsed and I had to depend on a machine to keep me alive. I was also paralyzed completely from head to toe. In short, the obstacles i had to overcome were endless. The only thing that kept me alive was my family’s support, my faith in God and my will to live. After months and months of therapy and treatment I was able to regain some of my health.
Although I haven’t been able to fully gain my mobility and independence, I have overcome so many obstacles. I continue to work hard to be as healthy as I was before the surgery and I am certain that I will accomplish that very soon. After these past 4 years of battling with the issues caused by my heart surgery i had yet another obstacle to overcome and this one was because of my diagnosis of scoliosis. Scoliosis is another problem caused by Marfan Syndrome. This is a bone deformity in my spine that caused me to have problems with posture and balance. It also was painful, which made it difficult to do my day to day activities such as therapy. This resulted with me not being able to progress with therapy and affected my well being.
So, again, I had to make the decision to get another surgery to straighten my back, in order to improve my chances of making more progress in therapy. Thankfully this surgery was very successful and has made my ability to exercise and do therapy much easier. Although the surgery was a success I did have a rough time adjusting to the changes done to my body. My life has not been easy due to so many obstacles i have had to face but I wouldn’t change a thing because I believe that everything happens for a reason. Like they say, what doesn’t kill you makes you stronger and I agree because everything i have gone through has made me stronger mentally. I feel now that i am more empathetic towards those who are going through hard times and I feel the need of helping in any way i can.
