❤️ Hi all! Not even sure if anyone even follows this blog anymore, but if you do I’m sorry I haven’t updated in almost 2 years ago. I have a CHD Instagram and CHD journey Facebook group which is what I update often on (links on the side of the blog), but keeping a blog has been hard for me to remember now with my life being all over the place the past 4 years. So if you want monthly updates then follow my Instagram or Facebook group. So much has happened the past two years, so I’m just going to do a quick sum up. August 25, 2021 I turned 34 years old and the next day I had my 3rd open heart surgery called a Fontan Revision which included an artery repair, Maze procedure (a more in depth cardiac ablation), right atrium reduction, and a pacemaker implant. All that took 12 hours! This was my 1st open heart surgery since my Fontan with Glenn in November 1989. I’m so grateful I got over 31 years before needing open heart again. Recovery went pretty well for the most part other than my arrhythmias weren’t going away which was one of the main reasons for the surgery, so I was put on a nasty anti arrhythmic drug called Aminodrone (nasty because of all the long term side effects it can cause). After 16 days in the hospital I went home and did really well. I weaned off Aminodrone in November 2021 and all was good. Chris and I celebrated 10 years of marriage on December 21, 2021 and had a quiet Christmas just the two of us because I was still recovering from open heart. At the end of December 2021 arrhythmias came back and I ended up in the hospital in January 2022 to be put back on an anti arrhythmic called Sotalol (something I had been on before open heart), but wasn’t cutting it. So, in March 2022 I had another cardiac ablation (my first was in February 2020), which didn’t help as much as they were hoping and ended back on Aminodrone. After a tough few months of recovery from the ablation things got better and they hoped I could try to wean off Aminodrone which I did in July 2022 as I was doing really well and even had a great cardiology appointment (and liver ultrasound for my Fontan Associated Liver Disease), but at the end of August 2022 after my 35th birthday I ended back in the hospital to be put back on Sotalol and then at the end of September 2022 I had a scary arrhythmia event which I called 911 for. In the hospital at the end of September 2022 I switched back to Aminodrone. So it’s been quite the journey of ups and downs. Before open heart surgery in August 2021 my mom’s family found out about a genetic blood clotting disorder that ran in the family and I tested positive for it, so hematology came into my life as a new specialist I see. Hematology made sure I got through open heart safely with no blood clots. I was already switched from 2 baby aspirin a day to the blood thinner Eliquis before open heart so no need to put me on anything as I already was on something good. I’ll be on Eliquis the rest of my life which I’m ok with. Adjusting back to Aminodrone again for the 3r time at the end of 2022 was tough and took until like December 2022 for my heart to be happier again. I did start getting pacemaker vibrations and nerve issues bad which doctors didn’t know if it was Aminodrone or my pacemaker sitting on a nerve or what. I went to the ER in December 2022, the day before Chris and I celebrated 11 years of marriage because the pain was bad, but they could not find anything concerning and I went home. We celebrated 11 years of marriage on December 21, 2022. My mom came over for Christmas and we had a wonderful time despite my nerve and vibration issues. Then in January 2023 I started getting swallowing issues and could only do liquids and purées. Luckily we have a vitamix at home. I saw my GI doctor and ended up having an endoscopy and mobility study in February 2023. I was due for an endoscopy anyways as Fontaners because of our livers could develop esophageal varcies, so getting an endoscopy every 3-5 years in adulthood is recommended. Both the endoscopy and mobility study came back fine and normal with nothing concerning, thank goodness. All they found was bad silent reflux which I already knew I had causing a flare up of esophagitis. My GI doctor thinks it was a combination of being intubated twice recently, many medication changes, sleeping in weird positions because of my heart palpitations, and so on that caused the flar up. He said I was doing all the right things and could take up to 6 months to heal, so be patient. Last month in March my throat started to get better and I’m swallowing soft solids and a few other things, though still have some purées, but I don’t need to rely on nutritional drinks as much. My heart has been pretty good and sleep has been better. My labs are slowly improving as they have been out of wack because of everything my body has been through the past 19 months. I feel so bad for Chris as he has been exhausted being my caregiver, husband, helping with the house, and working. We have very little family and friend support so no one has helped us physically much which has been hard on both of us. Just two months ago Chris and I were also mentally exhausted on top on physically. Everything has definitely impacted our mental health. We have been hanging in there and in our lows we clung to each other and hope. We are both so grateful things have been better the past few months. My mom decided to move away last month since were are moving soon, yes we are moving. Chris and I are moving out of state in a few months! We have been living in the Austin, Texas area since July 2014 and now we are moving to the Boston, Massachusetts area. We are excited and nervous about this new adventure! Neither of us have ever been to Massachusetts, so it will be a whole new fun experience for us. It was hard to say goodbye to my mom last month, but she is adjusting well back in the Dallas area near my little brother and his fiancée, yes my little brother got engaged in September 2021 and moved to Dallas in November 2021. Chris and I have done a lot of packing and our house is filled with boxes now. That is about where we are at right now. Still taking things one day at a time like we always have and counting our blessings as we have so much to be grateful for despite all the challenges we have faced recently. I wish my dad had been around during all of this as I was such a daddy’s girl and he offered me love and support that no one else can replace, but I know he has been watching over me. I’m sure he is still so proud of me. I can’t believe next month will mark 7 years since he passed away. I will say the CHD community has been such an amazing support to Chris and I through the past few years of tough times and continues to which has been such a blessing to us. We so thankful for the CHD community! Lastly, I finally designed some CHD awareness shirts (and mugs)! It has been something I have wanted to do for about 15 years and I’m so proud of myself for finally accomplishing it. I will link my Bonfire store below along with a few pictures from the past 2 years. Thank you to everyone who has thought and prayed for me even they didn’t see an update from me. It means a lot to me! Hugs and blessings to all! ❤️ ~Lauren B. ~ “A Hopeful Heart” (My email if ever want to contact me: lceleskey87@gmail.com
My Bonfire Store with the CHD shirts and mugs I designed: https://www.bonfire.com/store/lauren-b—hopeful-heart/
A Hopeful Heart 