The story behind my Open-Heart Surgery 8.11.99

This week is the 18th Anniversary of my Open-heart surgery. I have mentioned it here a few times off and on but I waited till this week to write the entire story. Obviously the Hippy, Debbie and I have different versions and well the beginning is from their point of view…

Time to go way back to April 8, 1978 when an 18 year old Debbie, married to 25 year old Pat (aka Hippy), gave birth to their first child, in Houston, TX. Unbeknownst to them their brand new baby was very sick. All seemed normal until my 4 week check-up. Debbie took me to my first pediatrician appointment with Dr. Truitt. Debbie had no idea what to expect but she did think it was strange that the doctor was listening so intently to my heart. Without saying a word Dr. Truitt leaves the room. A few minutes later he walks in with two other doctors who each take turns to listen to my heart. They all three step out and a while later Dr. Truitt walks back in the room with a note that lists the name Texas Children’s Hospital. Dr. Truitt tells Debbie he doesn’t know what he hears but he knows it’s not right. His colleagues all agree and they have already called the hospital and Debbie is to take me right then. Debbie is able to call the Hippy and relay all this information. Debbie has not lived in Houston even a year so the Hippy sent one of his Hot Shot drivers to pick us up from the pediatricians office and take us to the hospital. Debbie walks into the hospital with me and says a nurse immediately took me back. It was hours before the doctors spoke to her. They ran an EKG; Echocardiogram ; X-rays and bloodwork. Since it was Friday they told her the results would be back Monday and they made her an appointment to come in with me and they said to bring her husband. They had told Debbie I may be a little listless all weekend so she wasn’t really surprised when I slept a lot and didn’t really eat. Monday morning they took me to the appointment at Texas Children’s Hospital where they were told that I was in heart failure and they would need to keep me in the hospital for testing and monitoring. I was in the hospital for two weeks. During this time Debbie and the Hippy met some of the greatest heart surgeons in the US. Dr. Cooley and Dr. McNamarra. I was diagnosed with a Left Congential Heart Defect with a small Aneurysm of the membranous septum. (Left VSD with an aneurysm that was partially blocking the hole). I was placed on a digitalis (medicine) and that day Debbie was told I would never run; play; or come off my meds. My grandmother would later joke that her dog and I took the same meds but his were cheaper at the vet. I was released from the hospital in May 1978 to a very disheartened Debbie and Pat. They had no money. No insurance. No idea what to do with a baby much less a very sick baby. The Hippy also felt very trapped. He had already planned to leave Houston but realized this day he was forever stuck because of me. My heart was so enlarged, due to being overworked pumping my blood as the oxygenated blood was flowing through the hole and mixing with the deoxygenated blood, that I had to eat baby food till I was almost three. I was two when I had my first heart Catherization (the doctors needed to get measurements inside my heart of the blood flow and the size of the hole and aneurysm). Luckily Texas Children’s Hospital is a teaching hospital and they had a program that allowed for me to have free healthcare if my case was followed by the lead doctors and their students. Every summer I would have a full day appointment with Dr. McNamarra and about 10-15 students. I would have an EKG; X-ray; Echocardiogram and spend time in an examining room with Dr. McNamarra and his students. I was lucky to have Dr. McNamarra until he graduated me out of the program when I was 18. One of my greatest memories of him was his talking to the step-monster (Debbie never took me) and I was supposed to be jumping up and down. I being a kid would notice he wasn’t paying full attention and I would slow down. He would just move his hand in a motion that told me higher!  I was taken off the digitalis when I was 8. Dr. McNamarra (and students) attended my volleyball games when I was in middle school. I was so embarrassed that mid-game I would be called off the court and he would listen to my heart (as did all his students) and then he would nod his head at my coach and they would send me back in!  I had the full name of my heart Condition memorized by the time I was 5!  Anytime I was not in the care of family the Hippy would send a signed letter instructing emergency personnel of my condition and giving authority to treat me. It also had the phone number of Dr. McNamarra and later his cell number!  I had some difficulty creep up in the 7th grade so Dr. McNamarra wanted to do another Heart Catherization but by this time I was also on Debbie’s health insurance and they required that I be insured for a year as I had a pre-existing condition. So when I was 16 (9th grade) I had my second heart Catherization.  This Heart Catherization was traumatizing to me!  I was babysitting for a family in our neighborhood and the step-monster had learned that the father was studying to do Heart Catherization at you guessed it Texas Children’s Hospital and again I was in the student program. I was terrified that he would be present BUT I am glad he was. This is the first major surgery for me as a teenager. I remember being wheeled into the OR. The nurses transferred me from the gurney to the table. I clearly remember looking around at all the people necessary for surgery.I remember   them opening the curtain to the gallery so all the students can observe (think Grey’s Anatomy). I remember talking to the man I babysat for. Then the nurses completely undress me to prep me for surgery (remember I am 16!). If you are not familiar a Heart Catherization is where they inject a camera into your artery in your groin (while you are asleep) and the camera let’s the blood take it all through the heart. I remember waking up and telling my parents all about this and the Hippy signed me out of the student program. Also, the Hippy would never willingly allow me to have open-heart surgery as he didn’t want me to have a scar. Due to my parents being unwilling to sign off the hospital had a panel of 100 doctors and experts that would review the case and if they decided that surgery was necessary a judge would rule that I would have surgery. However everytime my case was presented it was pretty much 50/50 of doctors that felt it was life threatening and those that said to continue to monitor. This was the case when I was 16. The Hippy moved to Jamaica that summer so I was not seen at 17 but when I was 18 Dr. McNamarra had his nurse call Debbie and request to see me one more time. I went in by myself and met with him. We did all the usual testing EKG; Echocardiogram; X-rays and this time a stress test!  Dr. McNamarra kept detailed notes of every single visit and would mail copies to my pediatrician and to the Hippy each time. I was given my full heart record when I was 16 and the Hippy moved to Jamaica. Wouldn’t you know it I lost it. It’s no where to be found!!  When I was 21 I got very sick. I gained a lot of weight and my nails had started turning bright smurf blue. I was at work one day and looked down and saw my blue nails. My boss looked over and said “if you need to go to the doctor go!” I called Debbie and Ross (my husband who I had only been dating about a year). Neither answered so I drove myself to the ER (7.15.99). While I was in the ER being ignored by doctors and told that I was hyper ventilating, Ross was being laid off from his job of 5 years (Compaq Computers did a big layoff that day). I went home and quickly focused on Ross (the doctors had said I was fine). A few days later I talked to Debbie and told her what happened. I was still very blue and it was a very hot summer. Debbie made me a doctor appointment with her family doctor who had at least treated me for step throat before and had a copy of my heart records. I drove myself and ran into a friend of mine in the parking lot (her kids daycare was next door). Holly went to the doctor with me and I am so glad I was not alone!  The doctors (several different ones again) said that I had developed a reverse shunt and that the blood was basically pumping the wrong direction. My oxygen level had decreased to about 40%. They sent me home and said they would send my records to a cardiologist (since Dr. McNamarra had died). Holly followed me to my apartment and we hadn’t even sat down when the cardiologist office called and said to get there NOW!  I call Debbie who wanted Holly to bring me to her house and get her (her house was on the way to be fair). We walk into the cardiologist office. It is packed. People are waiting everywhere. Debbie sits me down and gives them my name. We wait only a minute and a full staff came out to the lobby and stick an oxygen measuring thing on my finger and start listening to my heart. I met the cardiologist in the middle of the waiting room and he announces to all that I am his emergency and it would be some time. The echocardiogram becomes available and he stands in the room watching the echo live (usually the doctor reviews it later). He leaves towards the end and once I am dressed I emerge. Again I am in the middle of the doctor office and he tells Debbie I need surgery immediately. I start crying (I am 21 after all and this is all of a sudden and very scary. My dad is in Jamaica and until this moment he had made all my healthcare decisions). The nurses are all on different phones trying to get me a surgeon immediately. I am very overwhelmed. Well immediately turned into two weeks. My surgery was rescheduled 4 times with 4 different surgeons at 4 different hospitals while I sat home with a very nervous Ross and a scared 4 year old Garret (step-son). Debbie was honestly amazing through all this. She called my dad in Jamaica and told him to come back and to NOT bring the step-monster and for the only time in my life he left her for me!  The delay was due to the insurance (I had my own this time as I was employed) requiring that a pediatric surgeon perform the surgery even though I was 21 and they had some difficulty getting this done. One hospital /non pediatric surgeon offered to do my surgery for free and my insurance company told Debbie If I did that they would not insure me for the rest of my life! So I waited at home for Debbie to call me. My surgeon was picked on 8.8.99 (my dad and step-monsters Anniversary and also my little sisters birthday (Debbie’s daughter)). On 8.9.99 I had my 3rd Heart Catherization and I was supposed to have surgery 8.10.99 but I got bumped again because the surgeon wanted to meet me first and the surgery was scheduled for 8.11.99. On 8.10.99 we met with the surgeon and my now husband hated him on sight. Ross wasn’t happy that my surgery was pushed for this meeting and he spent less than 3 minutes with us. We also walked St. Luke’s (connected to Texas Children’s Hospital) and met with my surgery team and had all our questions answered so it was a good visit. My surgeon was Dr. Ott. As he was running away from our meeting Ross asked him how big my scar would be (this was the Hippy’s issue). Dr. Ott with his hand on the door to exit turned back and said “4 inches”.  Surgery day arrives – 8.11.99. I wake very early and shower with the soap I had been instructed to use. Debbie actually arrived on time and took me to the hospital. I had a brief panic when I signed all the forms and almost walked away but an awesome nurse brought me meds that caused me not to care. I have no idea what really happened that day. I know the waiting room was filled with Debbie and the Hippy’s friends. Aunts and Uncles all came. Ironically one of Ross’ uncles mother had surgery at the same time and Debbie and Ross’ uncle became smoking buddies outside. The surgeon told Debbie that I had the largest hole he had ever seen; also my scar was exactly 4 inches! I remember waking in ICU that night and seeing Ross who told me that he couldn’t bring 4 year old Garret so he had left him at his moms house. I had told Ross I was in pain and he quickly got a nurse who explained that I was on a morphine pump and that I had no clue. Thursday morning I woke in ICU to an early visit from the Hippy. The nurse had just taken the tube out my my mouth (throat tube) and it was the first time I really woke as when I saw Ross the night before it was very fuzzy. Debbie says that the day of surgery she could only get my eyes to open when she said “Ross” or “Garret”. My ribs had been sawed in half and then wired shut so I really couldn’t / shouldn’t move without being very very careful. Thursday in the ICU brought me several visitors (Debbie and my last step dad Danny) and later Ross and his aunt and uncle. I was moved to a room Thursday night and I was told that I would start walking on Friday and when I walked a mile I could go home. No one stayed with me at the hospital. My dad and his friends came by and Debbie left with all of them to go eat. Ross was home with 4 year old Garret but Ross’ dad worked the 3pm to Midnight shift and came every night to see me and bring me a strawberry milk shake!  I remember hearing lots of screams that night and telling him that I thought someone died. He responded with “probably”. Friday was my first day I could get up and I walked a mile that day and was discharged the next morning 2.5 days after having open heart surgery!  I had to have help at all times as I could not sit up or lean back at all by myself as my ribs and muscles had been cut and I couldn’t risk breaking a wire and puncturing my lungs. I was instructed to cross my arms over my chests and let whomeever was helping me lean me forward or back. It was definitely a helpless feeling and a perfect trust exercise that lasted for 6 weeks. That was a long summer. Ross didn’t look for a job until I went back to work and his mother paid all our bills so he could stay home and take care of me. The Hippy went back to Jamaica right away and once my situation was no longer dire we did not see or talk to Debbie again. It was Ross and his family that nursed me back to health. Sadly the saga did not end with my surgery. Approximately 12 weeks after my surgery I started turning blue again. I went back to the cardiologist and once again I was rushed into an echocardiogram. This time the doctor comes in and looks at the screen. His response is “shit” let me say that’s not something anyone wants to hear and not someone who just recovered from having their ribs sawed in half!  The next day has me in the operating room again but this time for a TEE which is a procedure where they put you under and send a scope down your throat to see the heart. The doctor believes I popped a stitch and that it may heal on its own. Meanwhile I told him there was no way I was having surgery again. This is the day that Ross was called about the job in Austin and we decided to move. I saw a few doctors in Austin in early 2000 but nothing seemed to be of alarm to anyone. Everyone had hoped that the new hole would close if the septal wall could strengthen. In 2001 I started getting very blue and had trouble breathing and I also found myself back at a cardiologist office having the test run – EKG; Stress Test; X-rays and my 4th Heart Catherization. It was at this time the cardiologist sat Ross and I down and dropped the bomb that the only recommendation he had other than do nothing was a heart transplant. He explained that the open heart fixed the major problem but that you cannot repair a muscle that has been overworked for 21 years. The damage was done and was permanent. Ross and I talked about it for weeks. We also prayed about it and we went back and told the doctor we opted to do nothing. That is exactly where I am today at the age of 39 – 18 years later. I have a full life and I have taken up cycling and I am riding at least 70 miles each week on my mountain bike.


Hippy Update 8.2.17

It’s been a real long time since I have posted. The truth is I don’t know how my Hippy is doing. I called in May and left a message on his home phone and called his cell. No answer and no call back. I called in June and left a message on his home phone and called his cell. No answer and no call back. I did text him on Father’s Day and he responded with a thank you which is a small miracle because he calls texts “emails”!  I called yesterday and left a message at home and called his cell. No one answered and he didn’t call me back. I finally texted his best friend aka Uncle Glen yesterday and he told me that he spoke to my dad an hour prior and for me to only call the cell.  This doesn’t worry me. This doesn’t concern me. Truth is I lost my dad when I was 16 and he moved to Jamaica. He wasn’t here when I was navigating the perils of high school. He wasn’t here to meet anyone I dated. He wasn’t here when my grandmother asked me to drop out of high school and get my GED because she needed me to work. He wasn’t here when I met my husband. He did come back when I had open heart surgery (for another post) but he called collect on my 21st birthday. He wasn’t here when I got married. He wasn’t here for our wedding reception and the step-monster refused to bring my grandmother because she is a vindictive bitch. He wasn’t here when I turned 30.  He did show up when I graduated with my bachelor degree but of course missed my graduation when I received my associates degree. He is not here. My grandfather always said no news is good news so I am guessing his health is ok or maybe one day I’ll get a letter from the step-monster. Who knows. However what my Hippy taught me at an early age was that I am strong enough to be on my own and he taught me to Let Go. I found this today and just love it.