Waiting On A Miracle - New Heart For Victoria
Donation protected
At 14 years old, at a routine checkup, my pediatrician heard a heart murmur and referred me to cardiology. That murmur ended up being caused by Hypertrophic Cardiomyopathy (HCM), a heart condition caused by a genetic mutation that causes the walls of the heart often the septum, to become thick and stiff. HCM is believed to affect as many as 1 in 2-300 people based on recent research. Often, it is never diagnosed, and for many, is manageable and patients can still have a normal full life. However, for a percentage of patients, surgical intervention and transplant are needed. Some patients die because HCM can bring a high risk of sudden cardiac arrest - and sometimes this is the first sign of a problem. I was able to live a relatively normal life following diagnosis for several years, though the diagnosis did prevent me from participating in team sports and more strenuous activities.
In my early and mid 20s, I started slowly developing more limitations, getting more out of breath and tired with exertion, a change I attributed to working too much and being out of shape. I did not think that it could be my heart. Finally, at 25, I decided to go to the cardiologist and see how I was. He put me on medications and ran a battery of tests. Then, I received the bad news - my condition from age 17 to then had deteriorated a lot. I needed surgery, I was now suffering from chronic congestive heart failure, and would one day need a transplant. In August 2016, I underwent open heart surgery to remove a portion of the heart muscle that was blocking blood from flowing out to the body properly. One month later, I underwent minor surgery to insert an Implantable Cardioverter Defibrillator (ICD) due to a my having a high risk of dangerous arrhythmias and cardiac arrest. However, several months after surgery, I was starting to feel poorly again. My doctor attempted to adjust medications to no avail. He advised that I needed to be seen at the Advanced Heart Failure and Transplant clinic. It was around this time that I learned that in Grand Rapids, MI, a Center of Excellence for HCM had been established at Spectrum Health. I was desperate for answers and booked an appointment with the HCM clinic, and drove the 2.5 hours each way to get there. I found a caring staff, a doctor who wanted to help me find answers, and the care I had been looking for. However, it was understood that eventually I would need a transplant. My doctor told me that my tests showed a frightening condition - my heart muscle is now 41% scar tissue and the walls are so thick, that my heart only can accommodate a fraction of the amount of blood a normal heart can.
Despite aggressive treatment, I continued to deteriorate under this new care,so my doctor ordered a right and left heart cath in July 2017. Suddenly, I was taken from the cath lab to the ICU. The results of the cath had been so alarming, that I was kept in the ICU for several days and testing was begun immediately to determine my fitness for listing for heart transplant. At the end of the process, I was found to not be a suitable candidate for a few reasons, primarily my weight. I was advised that I would need to lose weight to qualify. Eventually, I would undergo gastric sleeve surgery to aid my sluggish metabolism and am now within weight requirements. For over a year, I have been on a 24/7 IV infusion of the inotrope milrinone that is forcing my heart to pump - due to the amount of scar tissue, my heart doesn't squeeze properly on its own anymore and requires this continuous aid and will be on this medication until I am able to get a new heart. I have also had to quit my job in September 2018, as I have become too symptomatic and ill to work.
As of July 11, 2019, I am now listed on the wait list for heart transplant through UNOS (United Network for Organ Sharing) as a status 4. Though I have received incredible and irreplaceable support and aid from my loving now-husband (we were married in April 2019 in a small Courthouse ceremony!) Jeff through this process, the loss of my job and my small amount of income, as well as the increase of hospital bills as time goes on and I continue deteriorating (I have spent approximately 4-5 weeks on and off in the hospital each year since I underwent surgery), has been quite taxing. The money raised will help ease the strain of these expenses, especially in the face of lost income from being unable to work at this time. It can be anywhere from 5-7 hours round trip drive to my team and I require visits at least 1-2 times a month, there are often times where we need to find housing there overnight, especially when I have to be unexpectedly hospitalized. Any help is very much appreciated.
In my early and mid 20s, I started slowly developing more limitations, getting more out of breath and tired with exertion, a change I attributed to working too much and being out of shape. I did not think that it could be my heart. Finally, at 25, I decided to go to the cardiologist and see how I was. He put me on medications and ran a battery of tests. Then, I received the bad news - my condition from age 17 to then had deteriorated a lot. I needed surgery, I was now suffering from chronic congestive heart failure, and would one day need a transplant. In August 2016, I underwent open heart surgery to remove a portion of the heart muscle that was blocking blood from flowing out to the body properly. One month later, I underwent minor surgery to insert an Implantable Cardioverter Defibrillator (ICD) due to a my having a high risk of dangerous arrhythmias and cardiac arrest. However, several months after surgery, I was starting to feel poorly again. My doctor attempted to adjust medications to no avail. He advised that I needed to be seen at the Advanced Heart Failure and Transplant clinic. It was around this time that I learned that in Grand Rapids, MI, a Center of Excellence for HCM had been established at Spectrum Health. I was desperate for answers and booked an appointment with the HCM clinic, and drove the 2.5 hours each way to get there. I found a caring staff, a doctor who wanted to help me find answers, and the care I had been looking for. However, it was understood that eventually I would need a transplant. My doctor told me that my tests showed a frightening condition - my heart muscle is now 41% scar tissue and the walls are so thick, that my heart only can accommodate a fraction of the amount of blood a normal heart can.
Despite aggressive treatment, I continued to deteriorate under this new care,so my doctor ordered a right and left heart cath in July 2017. Suddenly, I was taken from the cath lab to the ICU. The results of the cath had been so alarming, that I was kept in the ICU for several days and testing was begun immediately to determine my fitness for listing for heart transplant. At the end of the process, I was found to not be a suitable candidate for a few reasons, primarily my weight. I was advised that I would need to lose weight to qualify. Eventually, I would undergo gastric sleeve surgery to aid my sluggish metabolism and am now within weight requirements. For over a year, I have been on a 24/7 IV infusion of the inotrope milrinone that is forcing my heart to pump - due to the amount of scar tissue, my heart doesn't squeeze properly on its own anymore and requires this continuous aid and will be on this medication until I am able to get a new heart. I have also had to quit my job in September 2018, as I have become too symptomatic and ill to work.
As of July 11, 2019, I am now listed on the wait list for heart transplant through UNOS (United Network for Organ Sharing) as a status 4. Though I have received incredible and irreplaceable support and aid from my loving now-husband (we were married in April 2019 in a small Courthouse ceremony!) Jeff through this process, the loss of my job and my small amount of income, as well as the increase of hospital bills as time goes on and I continue deteriorating (I have spent approximately 4-5 weeks on and off in the hospital each year since I underwent surgery), has been quite taxing. The money raised will help ease the strain of these expenses, especially in the face of lost income from being unable to work at this time. It can be anywhere from 5-7 hours round trip drive to my team and I require visits at least 1-2 times a month, there are often times where we need to find housing there overnight, especially when I have to be unexpectedly hospitalized. Any help is very much appreciated.
Organiser
Victoria-Theresa Caragay
Organiser
Grosse Pointe Farms, MI
