Just A Girl Trying to Live in a Body that’s Super Moody

In this month’s interview we talk with Lisa from Arizona.

Hello Lisa! It is great to talk with you today. Could you please tell us a little about yourself?

My name is Lisa Goldstein I consider myself Chronically Ill and Invisibly Disabled.

I live in hot and sunny Scottsdale, AZ. I’ve lived in Arizona my entire 55 years.

I’m a proud mother of 4 grown ass children, 2 boys 2 girls, all healthy and thriving in their own way. I am also a Nana to 4 grandchildren. As an empty nester I have 2 fur seniors, a 14 year old Shih Tzu and a 8 year old Scottish Terrier, both females because girls rule!

I have a few things I enjoy doing, I guess I can consider them hobbies!? I enjoy cooking even though my diseases have tried to end that for me. I absolutely love to take long bike rides on my adult tricycle with my dogs in the back basket and because it’s electric I am able to go further than I use to. I absolutely love any type of live entertainment: concerts, plays, comedy shows, I try and attend as many as possible. I’m all about supporting the ARTS.

When I was able to work I started as a Social Worker and ended up as Certified Medical Assistant. I worked in family practice and cardiology.

Do you have a diagnosis for your symptoms?

It was always in me to help others. All that came to an end in 2015 when I started to identify with too many of the patients in the cardiology office I worked in. I first worked family practice and while working there I was becoming short of breath and stairs all of a sudden became my enemy. The doctor I was working for felt I was developing Asthma so he gave me an inhaler and that was the end of that. I started to develop new symptoms I couldn’t ignore, such as severe fatigue, swollen hands, and my short of breath was starting to affect my work. I decided to make an appointment with a cardiologist I trusted and underwent testing even though every test ordered came back unremarkable or “normal” I pushed for a cardiac MRI. That was the only imaging that showed a very rare congenital heart defect called Scimitar Syndrome or PAPVR. That was the first time I’d ever heard of the condition, let alone told I had it, and to think I had it since birth. A lot of my childhood and even adulthood struggles started to make sense. I was told I needed open heart surgery to repair my heart, this took a minute to accept but once I did finding a surgeon that was willing or trained to perform the surgery I needed was really hard. Most patients with the defect I had are babies and it is taken care of pretty quickly.

I was persistent and finally felt I found a surgeon that was willing and able to do the surgery.

Once the surgery was over within days I felt the same if not worse. I kept bringing it up to my cardiologist and pulmonologist and I was told it’s because I’m basically out of shape… even though I was back to needing supplemental oxygen to function. I knew it wasn’t because I was out of shape or over weight (which I wasn’t, I still pretty much weighed the same), I know out of shape people don’t need oxygen.

Luckily my insurance changed and after 6 months of basically feeling like death I was able to book an appointment with the Mayo Clinic Phoenix. My first appointment was set for 2 months out. After an evening at my youngest daughter’s High School graduation I knew I was dying at that point I made the decision to go to the ER department at Mayo. I was admitted into the hospital in severe heart failure. After 9 days of stabilizing my heart failure and tests it was discovered the previous surgeon basically didn’t know how to perform the surgery and I was left with the new pulmonary veins floating in my heart, hence the reason I couldn’t breathe properly.

The Mayo Clinic at the time did not have a surgeon on staff that could repair the problem so I had to be seen at the Phoenix Children’s hospital but when it was time for my 2nd open heart surgery it was performed at the Mayo Clinic. A year goes by and I began feeling like I couldn’t breathe again. I undergo tests and sure enough stenosis [narrowing] was closing my pulmonary vein. The surgeons first tried to use a balloon to reopen the vein,  however it just collapsed so another open heart surgery was needed. This time I had to take a trip to Minnesota to the mother ship of the Mayo Clinic. So in December 2017 I flew to Rochester once again in severe heart failure. Once I landed I did not feel well so I ended up going to the ER, good thing I listened to my body because I needed a blood transfusion. Had I not went in, my surgery would have been postponed or cancelled, too much coordination and planning went into the trip so that was not an ideal outcome. About 6 days later after my 3rd open heart surgery I was flew back home, yep unbelievable!!

Three years into my recovery, cardiac rehabilitation, check ups, etc., I was still feeling short of breath but mostly with activity, and forget walking up stairs. I brought it to the attention of the cardiologist and he recommended some pulmonary function tests that I failed miserably. I was referred to a pulmonary cardiologist. After a right/left heart catheterization it was discovered in 2020 I had secondary pulmonary hypertension due to my heart’s inability to pump efficiently.

After getting on the correct medication I was able to breathe better. That goes without saying I do have Restrictive lung disease. I will always have difficulties breathing, it’s part of who I am. As an adult congenital heart patient I will need lifetime medical care, which was proven in August 2022 when stenosis was discovered in 1 of my 4 pulmonary veins that were placed in 2017. I’m now a member of the stent club!!

Fast forward and other weird symptoms developed such as fingers/toes changing color, difficulty swallowing, numerous gastrointestinal problems, the clincher however was the pain I was in. It started in my wrists and hands then my ankles and bottoms of my feet where I couldn’t walk, then bigger joints, knee, hip, lastly shoulder, I could not lift my arm to wash my hair, comb it etc. At that point I decided I needed to see my PC after countless doctors’ appointments, labs, and imagining, I was referred to Rheumatology (again, I seen one in 2021 which is a longer story), I was diagnosed with Positive Rheumatoid Arthritis and Systemic Sclerosis Sine’ Scleroderma (ssSSc) an extremely rare form of Scleroderma.

Which of your symptoms do you find the most debilitating and why?

Right now my hardest days are when I’m dealing with the autoimmune diseases. The amount of pain I’ve had to learn to function with is insane. I’m taking 3 medications, after some trial and error I think I’m on a regimen that will allow me to get back to some things I enjoyed like cooking, cleaning, biking, but the big one is leaving my house!!

Is there anything you would like people to know about your chronic illness or chronic illness in general?

Ten years into this health crisis, and I do mean crisis, it’s taught me to be:

Brave
Patient
Resilient
Determined
And have a loud voice!!

I’ve advocated for every single diagnosis because I just didn’t fit the description of what illness looks like. I was fairly young, in shape, and always smiling.

My advice for those dealing with any chronic illness/disease is keep talking about your symptoms till you find a physician that will listen and figure it out with you. Find a good support network. If there is not one in your area turn to internet platforms or hell create your own!

We all matter, our stories matter, and if I personally can help one person with my story I’m here for it. I’ve yet to connect with anyone who has Scimitar syndrome but I still have hope I will.

I share my experience with my illnesses on Instagram, just started on TikTok, but would love to expand. I don’t know where my voice will take me but I do know I enjoy expressing myself and how I live with my rare diseases.

Thank you Lisa!
You can follow along with Lisa’s journey on Instagram @lisa.phights.chronicillness