“It takes a village to raise a child.”
Sometimes it takes a world village with just a few dollars ($5, $10, $25) to spare.
Gary Nguyen (Daddy), Keri Nguyen (Mommy), and Ty Nguyen (Sonny) could use your financial help as they adapt to Gary's diagnosis of severe Pulmonary Arterial Hypertension, a disabling condition brought on by his nearly three-year battle with post-covid issues. He cannot do even light household duties without being at risk of passing out. Oh, and he has an 18-month-old toddler running around in a 24-month-old’s body!
The Short Story – How COVID in March of 2020 changed their lives
Gary got COVID at the beginning; March 2020. For months, he couldn’t work. Brushing his teeth rocketed his pulse rate to over 140 and exhausted him to bed rest. This stretched for six months when he would at least try to work half a day, but his employer could not accommodate him.
X-rays, CTs, Specialists, no one had answers. “Sounds like long haulers, Gary, sorry.” as they shrugged their shoulders…
He’d have some decent days and then waves of horrible days. Bedridden. His wife was on hospital watch as his oxygen levels would bounce between “barely okay” and “GET TO THE ER!”
This continued throughout 2021. The Coronacoaster, they called it. Excellent, a fun name for a horrible ride! For those that know Gary, he did his best to smile and make the best of a terrible situation.
While unable to hold a traditional job, he found a remote contract position to help take care of his family in 2021 and into half of 2022. That's when it became too much. The brain fog, extreme exhaustion, involuntary naps, and illness after illness finally hijacked his life.
By the way, Ty was born on May 6, 2021. The highlight of the year. No rest for the weary but many smiles and laughs to go around.
The Bad of 2022
The first week of January – Keri had her birthday. Ty went to daycare for the first time. Four days later, he brought home Omicron – the newest in COVID. While Ty handled it just fine and looked amazingly cute, Gary was bedridden again.
Every couple of weeks, a new bug from Ty would send Gary back to bed. Before long, it was impossible to hold any job when calling out every other week. This employer was incredibly accommodating, but Gary finally stepped away because he knew he was hurting the team. And by stepping away, he could focus on finding medical treatment and building an incredible care team.
The Good of 2022
The fantastic care team now consists of his primary care doctor, a cardiologist, a pulmonary specialist, a speech therapist (cognitive), a physiotherapist, amazing nurses, and a mental health therapist (This is stressful!).
A caring, concerned [expensive] medical team that would not accept shoulder shrugging was able to track down the illnesses and provide us labels for what Gary has been going through:
- Pulmonary Arterial Hypertension - Pulmonary hypertension is a type of high blood pressure that affects the arteries in the lungs and the right side of the heart. Patients with pulmonary hypertension cannot perform any physical activity without symptoms. Dyspnea and/or fatigue may be present at rest, and discomfort is increased by any physical activity.
- Post-Exertional Malaise (Post-Exertional Symptom Exacerbation) – A disabling and often delayed exhaustion disproportionate to the effort made. It is sometimes described as a “crash”. The activity that can trigger this worsening of symptoms can be something that was easily tolerated before, such as a shower, a walk, working at a desk, etc.
- Long-COVID Autonomic Dysfunction - Long-COVID, also known as Post-Acute COVID Syndrome, is the development of chronic and potentially debilitating symptoms, including fatigue, cognitive impairment, weakness, headache and dizziness, among many others.
For Gary and Keri, accepting and adapting to the new diagnoses and situation has been exceptionally challenging for the past two months. Fortunately, Ty has been blissfully unaware and the happiest baby on the block.
Well, that about sums it up; sorry it ran a little long for a short version!
And that’s why Gary, Keri, and Ty could use your help right now. The best way to help would be with a monetary donation (use of funds breakdown below). Every $5 or $10 helps immensely.
If you’re unable to help that way, sharing their story and fundraising page with your personal and/or professional networks would be amazing too. And most importantly, keep them in your thoughts and prayers. Thanks for taking the time to read their story.
Here's a quick 90 sec. message from Gary’s primary care doctor, Dr. Heather Banks [UC Health] (Sorry for the quality, Gary had to do a virtual visit and recorded it off his screen :D )
FAQ
Why is fundraising necessary now?
- It's officially a permanent disability preventing Gary from working. After being unable to work for ten months in 2020 due to covid, mostly part-time in 2021, and unable to work since May of 2022, it’s clear that the illnesses are more serious than we wanted them to be. On Gary’s best days, he can do some light household chores with an hour or two of rest between tasks; on his worse days; he’s unable to leave the bed without his pulse going up to 140 and his oxygen dropping to severe levels (risks passing out).
- It's been a long, expensive medical road thus far. Over the past 30 months, they’ve exhausted their savings, accumulated substantial debt, and now their medical bills are overwhelming due to insurance issues as well as the cost of treatment.
- Our healthcare system is brutally complex and conflated. Most recently, they had just met their maximum out-of-pocket in August when COBRA informed them on Sept 17, 2022, that their COBRA coverage ended August 31st. That’s correct; over two weeks after it ended. Not only did it start over on a maximum out-of-pocket meter, but they’re also now on the hook for over $10,000 for medical procedures that were supposed to be covered.
- There are a lot more medical bills coming down the road. They're now facing another $10,000 out-of-pocket medical expense through insurance for this year and yet another $10,000 out-of-pocket expense through insurance in January 2023. They’re hoping not to delay testing and procedures another two months.
How will the money be used?
- Please know that every donation counts, no matter how much it is. Every $5 or $10 helps us towards our goals of getting the health care and recovery Gary needs to improve and assist his wife Keri and their 18-month-old son Ty.
- 10K – The first 10K helps them take care of the unexpected costs of the medical procedures that were supposed to be covered by Gary’s COBRA insurance in September during the coverage gap (Right and Left Heart Catheter and a VQ Lung Scan).
- 20K – The second 10k covers their current(new) out-of-pocket maximum on their insurance. This allows them to get further testing and diagnostic procedures as soon as possible by meeting their maximum out-of-pocket insurance benefits for the year without delaying into 2023. – (Heart MRI, Right Heart Catheter with contrast, Sleep Study so far)
- 30K – The third 10k covers their maximum out-of-pocket in January 2023 when their maximum out-of-pocket insurance resets. (Anticipated medical procedures in 2023 that the Cardiologist and Pulmonary specialist have in queue: Muscle biopsies, Nerve Biopsies, Rheumatology Referral, Cardiac/Pulmonary Rehab)
- 40K – The fourth 10k helps them with some recovery equipment {Home and Portable Oxygen Concentrator Equipment}, but most importantly, helps them return Ty to full-time daycare instead of just three days. Gary currently takes care of him on Tuesdays and Thursdays, which ultimately drains him and has him on bedrest on Wednesdays and Fridays. Full-time daycare would allow him to rest and recover while the doctors work on stabilizing him.
- 50k + – If they are further blessed, anything above this helps them gain some buffer with living costs and adjust to navigating this new journey. Here’s how this portion of the funds would help Gary, Keri, and Ty tremendously:
• Assistance while they apply for disability (an exceptionally drawn out and lengthy process)
• Paying for Household assistance – Yard work, Cleaning, etc.
• Childcare assistance when Ty is sick and unable to go to daycare
• Quality of Life items – Example: Rotating Baby Car Seats to reduce exertion for Gary and reduce back strain for Keri, changing how our home is organized to accommodate Gary, etc.
• Optional but helpful medical and assistive accessories and technology for Gary to use when leaving the house on good and bad days
Is there a cure? What does recovery look like?
- It’s still early in the treatment to know since the causes of PAH are varied. Typically, there is no cure for PAH, but patients treated properly can live a long fulfilling life.
- Finding the causes as soon as possible will help with treatment. At this time, there are no life expectancy concerns so focusing on medical treatment and symptom management is the first step. The next step will be to safely determine what Gary can and can’t do while on treatment. This will allow us to move to rehabilitation and recovery safely.
Would you like to know what Gary and Keri are like?
Check out their 8 minute Wedding Video - Try not to cry :D
What are these conditions like for Gary?
- Here are some resources if you’d like to learn a little more about them:
- Pulmonary Arterial Hypertension
- Post-Exertional Malaise
- Long COVID and Dysautonomia
- Symptoms Gary Deals With
- Long COVID Autonomic Dysfunction