Katie: HLHS, 29

My name is Kathleen Greene. I have Hypoplastic Left Heart Syndrome and was born12/15/90 in Elmhurst, IL and was later med flighted to Ann Arbor, MI for all of my surgeries. I was the first infant in 1990 in Ann Arbor, MI where my doctors had perfected all 3 surgeries on myself as a few days old.

I was born in a time frame when medical science was at its infancy, well at least with my rare condition it certainly was. December 1990 my mom had no idea what was going on after I was born. I will be informing the reader facts, and memories that I have recollected from the past as well as stories my family had told me throughout the years. The doctors informed her that it appeared that I was in distress and at that time that is the only information given to my mother and my family. A few hours had passed and I was in an incubator while specialist tried to pin point what exactly was the issue, my stats were not where they should have been. After a few discussions the consensus was to have me med flighted to Ann Arbor, MI. Being surrounded by well known cardiologists with the hopes of finding an answer.

While being examined at C.S. Mott Children's Hospital I had to stay for nearly 3 months. I was hooked up to all kinds of machines and feeding and breathing tubes during this time. I underwent my first surgery for my condition of HLHS. HLHS is hypoplastic-left heart syndrome where doctors determined that my left ventricle was under developed significantly.

Phase 1 in the process of open heart surgery occurred within the first week of my birth. Norwood procedure occurred first, “a connection called a shunt is placed between the pulmonary arteries and the aorta to supply blood to the lungs.”

After the three successful operations had occurred I was able to once again return home back to Illinois and see how successful the surgeries would be during hopefully a longer period. My medication had dropped a significant amount in which I was taking until I was about eight. The pill count had dropped to around four or five pills.

Flash forward to 2002 I was around twelve years old and taking two pills, Digoxin and Lisinopril. I had awaken in the middle of the night with terrible chest pains, after informing my mother we had driven to the nearest hospital. I had arrived to the hospital that morning with my heart rate reading nearly 200BPM. Doctors had injected a cold liquid in my IV that was suppose to help relax my heart rhythm. It did not take the first time very well so we had to try it again and it later relaxed down to a more steady heart rate for myself.

Later that day I was diagnosed with arrythmias and was told to essentially remove caffeine from my “diet.” While living in WI during this time I was seen every six months at Childrens hospital of Madison. It was my routinely check ups with the occasional stress test every few years. My last stress test during this time frame was around the age of 12. I had moved to IL in 2004 where I was later seen by a new cardiologist that was referred to me from my Madison Dr.

My doctor visits had became a yearly visit. Arrythmias continued around the age of twenty-two while working in retail. I was on a halter monitor for thirty days just to check how my heart was doing around this time. While on the clock I was ringing customers up late at night and the monitoring company had set the alarm off on my monitor and requested I call them as soon as possible. I called and was told that I needed to get to the nearest hospital as quickly as possible I was having pretty severe arrythmias but I could not feel them.

After coming out of what I believe was my first surgery going into my second 3 months after my birth (yes I was hospitalized for 3m straight) I was on breathing tubes and feeding tubes, during that process the tubes damaged my vocal cords and I now have vocal cord damage which affects my voice. Trying to explain that to others gets very frustrating because I grew up just knowing people are unique and not all are the same. I understood it when kids would make comments but as an adult now and hearing what comes out of adults mouths just disgusts me sometimes.

I am on Digoxin, Lisinopril and Metoprolol (beta blocker). When I was born though I was on several different medications.

Some may feel that my diet should be changed but doctors have said that my eating habits are just fine I eat a lot of veggies and carbs but I steer clear from meat (usually) just because I don’t crave it. I have recently started working out on an elliptical. I very recently started going on the elliptical. I try and go on every day for at least 10 minutes, however, I have occasionally done it for 20 minutes. For 2018 I have a goal to try and do different things so I recently tried wall climbing.

My daily regimen is to go to work.. I currently work part time in retail. If I am not working I usually just come home and relax.

I really enjoy baking, watching movies/tv. In high-school I took a few cooking classes and a photography class.

I will put out there that I do drink alcohol and I have in the past tried smoking cigarettes. I have since not smoked cigarettes but I do dabble with marijuana. I of course got the OK by my cardiologists and I do not advise others to do so unless they have spoken with there cardiologists. Growing up my main cardiologist told my family not to put limits on me as a toddler, child, etc, he had said she will know what she can do and what she can’t by trying it first.

I come from a large family and I am the only one in the family who has a CHD.

Growing up I never really knew “what I wanted to be” or the career path to choose. It took me many years and I didn’t even go to college right after high school because of that reason, I kind of regret that now though seeing as I am 27 with no college degree. However, it finally has hit me of what I want to do and it makes so much sense. I will be going into the medical field to be an ultrasound technician and my inspiration is most definitely all of the doctors that helped me along this journey I have been on since I was born.

I have been told by several different doctors different views on if I can or should have children, some say yes but some don’t suggest it. I never was really fond of the idea of having children although the older I get I do kind of get baby fever every once in awhile. But I am still leaning towards, no… not having kids. My friend Bethany did tell me she told would carry my child if the time ever comes.

After my trip to the hospital that night my cardiologist had put me on a beta blocker called Metoprolol. I am currently 27 years old still taking my digoxin,lisinopril and metoprolol. I had moved back to WI with family the last half of 2017. During my transition of finding a new cardiologist I was told to basically get retested so he could see the results of my heart at this stage. We requested previous medical records and he did his comparisons that he needed to review. October 2017 I was put back on a halter monitor and the results came back clear.

A doctor in Oshkosh,WI requested the halter monitor and later in that visit referred me to a cardiologist in Milwaukee because he was not very familiar with my condition. I later saw Dr. Tajek in November after my halter monitor had ended and I was going in for a consultation, echocardiogram, MRI. After that visit I had scheduled another appointment to see him in January 2018 to partake in a stress test and another consultation to review the outcome from my previous visit tests compared to my 2013 Mayo clinic visit where I had done HLHS study research.

I love my cardiologist in IL but since I have moved to WI I am in the process of finding a new cardiologist and so far I am just feeling kind of blah about them. Mainly because I have very high expectations of what I am looking for. I did have a Doctor recently who was just terrible he didn’t really do anything for me, never added anything in my new patient document and still tried to bill me for it.

Current issues that I am facing is having arrhythmias. Ever since I was 13 I was told by doctors not to have caffeine. None of my organs have been affected. I have been on a beta blocker from the time I was around 18yrs old to help control the arrhythmias.

During my January 2018 visit with my cardiologist in Milwaukee we had discussed the results and comparison. I received the message that my stats had decreased. My right ventricle is getting weaker I am sitting in the percentile of 30-35% usage of my right ventricle. My stress test results came back at a 23% and for a heart transplant I would have to be around 14%. I was informed to set up another appointment to see an electrophysiologist in Fondu Lac, WI where he will determine if I possibly need a pacemaker at this stage. My doctor is leaning me off my beta blocker Metoprolol and putting me onto a new one that is designed to essentially maintain my right ventricle muscle where it currently stands.

I currently have my original heart, no pacemaker and no transplant.

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