Introduction

Greetings! I’m Laura, a 41 year old, single, childfree woman living in Kansas City Missouri with my cat, Lola. I was born with a heart defect called Hypoplastic Left Heart Syndrome and I am leaving my job as a social worker in child protective services at the end of January to focus on my health.

My formal diagnosis is Double outlet Right Ventricle (DORV) with d-malposed great arteries and pulmonary atresia resulting in hypoplastic left heart syndrome (HLHS). If you’re a doctor, maybe that makes sense to you. The way I describe it to people goes like this: a normal heart has two ventricles and four chambers. My heart has one ventricle and two chambers. So essentially, I have half of a functioning heart.

On February 27, 1992, when I was nine years old, I had an open heart surgery called a Fontan which was completed at The Mayo Clinic in Rochester Minnesota. For those with medical degrees, this is the technical explanation of what was done:

• Right bidirectional Glenn with RPA patch arterioplasty

• MPA division

• IVC to coronary sinus baffle, which then allows continuity from IVC to L SVC

• Left bidirectional Gleen with LPA patch arterioplasty and LSVC side-to-side anastomosis to LPA.

Essentially the circulatory system around my heart was changed to accommodate my single ventricle heart. It worked really well for a very long time but unfortunately, in the last several years, I’ve declined significantly. In December I had a cardiac catheterization to gather more information and the outcome wasn’t good. I am currently in a position where I will mostly likely need a transplant in the next five years and I am currently not a candidate for one. The venous pressure in my lungs is too high and I have other symptoms of congestive heart failure, like retaining high amounts of fluid. After the procedure my cardiologist increased my diuretics and started a new medication called Jardiance. My heart has gotten stiff and is not working as efficiently and the Jardiance is supposed to help with that.

The good news is that the diuretics are working (which means I have to pee ALL THE TIME) and I haven’t had an issue with excess fluid in my body for in several weeks. This reduces the stress on my heart and means that I have more energy because my heart isn’t having to work as hard.

My primary health goal is to get to a point where I can walk 30 minutes without stopping. My intention is to walk once a day in February and move to twice per day in March. I have learned from past experience that I often try to do too much in the beginning which only results in my being tired and abandoning my goal. I don’t have a set time yet for how long I want to walk because first I need to establish a baseline.

Last November I started doing strength training with a personal trainer at my gym and that has been very beneficial. The progress is slow and small but I have seen an improvement in my balance and more steadiness in my gate when I walk.

I also want to do fun things during my sabbatical and have three non-health related goals.

Goal 1: I used to love cooking but am now at a point where I’m just trying to make food for the week the requires the least amount of effort. I’m so much more tired than I used to be but I hope that changes when I’m no longer working. I want to rediscover the joy that cooking used to bring. Solo cooking is also a challenge - how do I make small enough portions that I’m not left with days of leftovers? I purchased a solo cooking cookbook by America’s Test Kitchen and will report back on how much I like it and how useful I find it to be.

Goal 2: I purchased an automatic wet food feeder for Lola upon recommendation from my vet. I set it up only to discover that it freaks her out. So, once I’m home all day I will be able to encourage her to use it. Lola can be very food focused and the idea is that if she is able to eat multiple times per day, she will be a happier kitty. I certainly know that I’m much happier when I’m able to eat multiple smaller meals each day.

Goal 3: Lola has a fancy automatic litter box that she will not use. I desperately want her to use it because it will make my life easier. The only negative of having a cat is the litter box. This litter box automatically empties into a bag that just has to be taken out and thrown away when it’s full. No scooping required! After we’ve conquered the automatic feeder, the litter box is next!

Thank you so much reading and please subscribe if you want to stay updated on my health status, progress on my goals (health related and non), and other things I choose to write about.