It's been awhile since I last updated. In my last update I wrote how my cardiology appointment and liver appointment went which brought me news of another open heart surgery next year called the Fontan Revision. I don't usually share everything that I truly feel and is happening with my life especially my life with a complex Congenital Heart Defect or "half a heart" (Tricuspid Atresia, HRHS... 22yrs Post Fontan). Yes I share my journey, yet I don't share all of it... make sense? There is only so much I can share or have opted to share. I usually focus on the positives as I know that gives more Hope to all you CHD parents out there. But it's not all roses and butterflies living with such a serious medical condition. So, today is going to be one of those times where I'm going to "let it all hang out" to give a glimpse into the emotional side that all Adult CHDers have, but all cope with differently/ handle it differently.
Over the past year when I've been going downhill a bit more physically it's been hard... more emotionally. To know your body fails you to be able to do certain things you once did with more energy.. SUCKS. I've slowly been a bit more depressed, my anxiety disorder has worsened, and I now have some OCD issues. OCD in handwashing and touching things... totally has been out of control that I have to hide myself from seeing how my husband cooks dinner with meat, I won't touch meat now and have these feelings that I have it on my hands. This also goes with other things like I need to cover my hands to put the clean stuff from the washing into the dryer than wash my hands after, to sometimes feeling the overwhelming need to turn on the washer to wash the clothes all over again. My hands are so dry and can bleed. These are just a few examples. I go through soap and toilet paper like crazy, which drives my husband insane. My anxiety of getting sick, ending up in the hospital, etc. has been driving me up the wall and causing me nightmares. I break down and cry a lot usually over nothing. With my energy lower and not being able to do much around the apartment, I feel pretty useless. I HATE how my mind is doing this to me and I HATE that my heart feels the need to take energy from my body. I HATE HATE HATE HATE IT!!! I'm looking to find a Psychologist to see so I can get my mind in a better state as I hate the OCD and anxiety issues SO bad. SO I'm determined to help myself in that way. And so I'm not as much of a pain in the ass to live with even if I sometimes think I have a right to breakdown every so often.
When I saw my new cardiologist, whom I love, he started to draw out my heart. I know my parents got that talk back all the way 24 years ago in a small room... now it was my turn. When he was drawing I knew where he was going to take the talk to. After all I had researched this guy out as I was looking for one of the best in treating Fontan patients especially older Fontan patients... he has almost 30yrs of Fontan experience and worked a bit with Dr. Fontan's colleague... so I knew I was going to hear some things I may not like. After drawing out my Fontan heart he started saying all the things that are not good about this route, than what is better about the newer Fontan routes, than how those are not great either but better. Than explained how all Fontans suck yet is the only thing that can keep us complex single ventricles alive for a long period of time holding off a transplant or well we all know the other option. Sitting there I felt like I got punched and was starting to hate my heart a LOT. That night I cried. But I have my amazing husband who was there to comfort me and throw out positives out there that made me feel better.
Since my appointment how am I doing? Honestly? It's a day to day thing. Sometimes I'm fine or OK... others I'm not and others is horrible. I get nightmares almost every night... some wake me up scared out of my mind and wanting to climb out of my body. Some wake me crying saying "I don't want to do this anymore". I've told my husband how unfair this is. I don't want this burden. I don't want another major open heart. My parents are the ones who basically remember everything from my first two open hearts other than maybe 2-3 memories from my second (my Fontan) that I remember. But I remember other surgeries and other hospital visits, and other pain that scared me as a child... but the bribes and comfort of my parents made things it ok and comforted me that everything will be ok; even though I know they hid their fears and feelings from me. Since I've been 16 and I've known everything... it has been my life and journey to take over... and it has not been easy to take it all on yourself. I remember at age 18 when the nurse called me back for my cardiology appointment my mom walking behind me got stopped by the nurse. "Mrs. Celeskey, Lauren is 18 this year, it's up to her if she would like you to come back." My mom just looked at me and I responded "I want to do this by myself and I'll make sure you get called back when the doctor comes in... ok?". She was ok with it, but I don't know how she really felt. But I KNEW I HAD to do this by myself... at least the tests part of it, not the doctor talk.
The day of my appointment last month my mom called a bunch of times like she always does the past 4yrs that my husband has come with me instead of her. Since this was a new doctor, I put her on speaker to hear everything and ask questions. She gave her feelings and questions... some motherly things she felt came out and said she wanted to give him her number. He took it down but than said "I know your Lauren's mom, but she is an adult now and everything needs to be run by Lauren first. All decisions are Lauren's alone now. I know that is so hard when parents have done everything for so long...". My mom was ok with it and she supports me with any decision I make even if I decide not to have this surgery and just up medication and hold out for a transplant 10 some years down the road. I can't imagine the emotions my parents especially my mom has gone through and coped. My parents share a lot but I KNOW not everything and probably never will. I'm OK with that. But to know that it's ALL MY decision now... that anything I decide I'm now the one signing MY life away... that is SO scary. I remember my third eye muscle surgery at age 21 and it was the FIRST time I had to inform consent for my own life. No surgery is simple for a CHDer like me.... I remember them going over all the risks "blindness, bleeding...." and in my case because of my heart "rare possibility of death". They had to have cardiac team in the room and I had to be put me to sleep by a CHD Cardiac Anesthesia. I teared up signing the form. I remember the Anesthesiologist come in and smile saying "You sure have been through a lot, looked at your medical record." Yea I felt freaked out. But I came too hours later with my eyes bleeding and swollen shut... I know others surgeries like open heart are TONS more painful, but even your eyes swollen shut isn't very fun, but I had been through MUCH worse. I just didn't like running into walls.
Where am I going with all this? I'm just rattling off some things I've had to go through and have been scary for me. This is a life long journey and in the beginning it is ALL on the parents... and boy I love my parents and they are my heroes for getting me through hell and back. The Adult CHDers like my who are very blessed and lucky to make it into adulthood now have the full responsibility, but with "hopefully" support from family and friends. My parents STILL worry and since they have known for sure that the reality they have ALWAYS known of my having another open heart is now here, they are scared for me. But once we are Adults, this is now our journey and it's not always easy. Next year I will have a heart catherization and an open heart... first ones as an adult meaning I will be the one signing the informed consent knowing full well what I just signed will be putting MY life, MY hope for the future into strangers hands... something my parents did so many times.... it will come full circle and I will feel the gut punch they did in a different way. This will be hard. This sucks. CHDs SUCK!! I'm honestly scared and honestly feel I may not be strong enough.
BUT you know what? I have my amazing husband whom will be thrown into one hell of a journey that he has never been on before... but he is SO amazing and supportive... my rock and best friend... he has always been there for me already. My parents will be there by my side, my brothers, my mother in law, and my best friend. I WILL get through this. I'm trying to keep positive as I have my whole life whether it was my heart or any other challenge I faced. I know things could worse. I will keep living to the fullest. I WILL NOT let my heart take joy, laughter, or good from my life!! I just wanted to share a small bit of the crappy side of being a complex CHDer.
I'm going to start to journal soon. I plan on publishing a book sometimes after my surgery. YES I AM planning a future!!! I won't let open heart stop me from that. I plan on also being a mom, getting a job, and spending many, many, many years married to the love of my life. <3
My Husband, Chris, and I the day after my Cardiology appointment
