RLucier
11-08-2018, 12:09 PM
My name is Rachael, I am 28 years old and I am a LCDH survivor. I was diagnosed with my CDH at the age of 15!! They found my defect incidentally when I went to the ER for light chest pains/discomfort after starting birth control in order to give me a regular menstrual cycle and my parents were afraid because my sister had a stroke that doctors assumed was caused by birth control.
After my diagnosis I saw a doctor at Children's Hospital Minnesota, the surgeon initially went through a standard conversation with me under the assumption I was sent to him with a hiatal hernia, he stepped out of the room to review CT scan came back in and basically said never mind you need surgery sooner rather than later. I was lucky enough to only have fat and no organs being pushed in to the chest cavity and was able to have thoracoscopy to repair my CDH I remember being told right before I fell asleep that I would either wake up with 3-4 small incisions or 1-2 large incisions on my abdomen and side. I woke up with small incisions and was told the repair went well no mesh but they had to collapse my lung to reach the defect.
I went through life having issues here and there with back pain on the left side and various amounts of reflux. It wasn't until almost three years ago that I began to have issues with palpitations fluctuating blood pressure tachycardia and present with abnormal EKG's that would show to someone who wasnt aware that I had a serious life threatening heart condition. I had my heart checked and there is no apparent reason for the abnormal EKG's so they traced it back to my surgery. In the past month I have had severe pain on my left side in the area where my surgery was preformed and was told I have nerve damage to the diaphragm and T5 and T6 region of the left side of my thoracic cavity. That is my current battle with my CDH history.
Compared to what some have suffered I am very lucky! I have had two healthy pregnancies where both girls were monitored and diaphragm was intact and working just fine! I want to offer support for those who are going through their own battle with recovery diagnosis or are about to be parents of a CDH child. I may not be able to fully relate to those who have had repair as an infant but I do know what it is like to grow up having that condition and repair. Every Cherub is different and issues I have had throughout life suddenly make sense after hearing of peoples journeys and point to my CDH as the cause. I am in the Minnesota area and ready to represent!
After my diagnosis I saw a doctor at Children's Hospital Minnesota, the surgeon initially went through a standard conversation with me under the assumption I was sent to him with a hiatal hernia, he stepped out of the room to review CT scan came back in and basically said never mind you need surgery sooner rather than later. I was lucky enough to only have fat and no organs being pushed in to the chest cavity and was able to have thoracoscopy to repair my CDH I remember being told right before I fell asleep that I would either wake up with 3-4 small incisions or 1-2 large incisions on my abdomen and side. I woke up with small incisions and was told the repair went well no mesh but they had to collapse my lung to reach the defect.
I went through life having issues here and there with back pain on the left side and various amounts of reflux. It wasn't until almost three years ago that I began to have issues with palpitations fluctuating blood pressure tachycardia and present with abnormal EKG's that would show to someone who wasnt aware that I had a serious life threatening heart condition. I had my heart checked and there is no apparent reason for the abnormal EKG's so they traced it back to my surgery. In the past month I have had severe pain on my left side in the area where my surgery was preformed and was told I have nerve damage to the diaphragm and T5 and T6 region of the left side of my thoracic cavity. That is my current battle with my CDH history.
Compared to what some have suffered I am very lucky! I have had two healthy pregnancies where both girls were monitored and diaphragm was intact and working just fine! I want to offer support for those who are going through their own battle with recovery diagnosis or are about to be parents of a CDH child. I may not be able to fully relate to those who have had repair as an infant but I do know what it is like to grow up having that condition and repair. Every Cherub is different and issues I have had throughout life suddenly make sense after hearing of peoples journeys and point to my CDH as the cause. I am in the Minnesota area and ready to represent!