How living with a chronic illness has prepared me for the COVID-19 epidemic

Hi there! It's been a while!

Since my last post almost three years ago, good health has enabled me to resume a full and meaningful life: a full-time job with the Adult Congenital Heart Association, life in a tiny house by the beach, lots of travel, time with family and friends, and immersing myself in the congenital heart disease community. It has been a dream!

In the past couple months, however, the outbreak of the COVID-19 pandemic has turned this world into a new surreal reality that has been scary and unrecognizable. With "stay at home" orders in 27 U.S. states, 3.3 million+ unemployment claims filed last week and the number of cases in the U.S. growing exponentially, our lives are disrupted and the future well-being of our country and its people is uncertain. These are scary times. That out-of-control feeling is riddling many of us with fear, anxiety and emotional exhaustion.

This is a familiar feeling for me. It might be a familiar feeling to anyone who has lived with a chronic illness.

Born with a congenital heart defect that has required four open heart surgeries and ongoing specialized care, my life follows a pattern of up and down periods of good and ill health. Five years ago I went through a period of ill health in which for three years my health was in decline and my life put on hold. I had two open heart surgeries within 15 months of each other, each with about a year recovery period. I couldn't work and didn't know if I'd be able to work again; I lost my sense of independence and the certainty of my future. It was an extremely scary, frustrating and difficult time.

But I made it! I got through it and it led me down a new path that has gifted me with new friendships and given me so much meaning. Through it, I learned some new skills--skills that taught me resilience and helped me to get through the unknown and uncertainty of the time.

The current COVID-19 epidemic is uncertainty at a whole other level: the scale and volume of this does not compare to one person's journey through uncertainty. However I do think some of the things I've learned through my ups and downs and my more recent bout of ill health are relevant and may be even be helpful to how we each choose to cope right now.

This is what I've learned helps me when I face the unknown and my life feels upside down:

Lean into your people
Connect with your loved ones: text, call, email, Facetime, set up a virtual chat with a group of friends, set up a virtual coffee hour or happy hour on Zoom. Let someone know if you are struggling or you need help (with groceries, paying the bills, emotionally). We only get through challenging times together. And right now, we are all in the same boat, so reaching out to someone will probably help them too.

Keep a routine
It is great staying at home in pajamas all day, but setting up a routine can be a game-changer for your mental health. When I was stuck at home recovering, having a regular sleep schedule, making the bed every morning and having a balanced schedule of activities kept me feeling human.

Stay active
Fresh air and physical exercise is one critical key to sanity. Even though outdoor walks were a physical struggle for me in my recovery, I always felt better after them, mentally, emotionally and even physically. Go for a walk/run every day. If it's bad weather, do some physical routine indoors.

Eat healthy and happily
Ok, so food is probably the #1 key to my emotional and psychological well-being. It is easy for me to stress eat or overindulge in comfort food during stressful times. During my recovery I saw the tangible link between what I ate and how I felt and how fast I recovered. Taking time to eat healthily will equip your body with the tools to get through stressful times. Create challenges or routine that reward yourself with a treat every day in moderation (glass of wine, brownie sundae, chocolate).

Self-care everyday
Do something every day for yourself. What helps you hit the reset button? Maybe it's one of the above things...connecting with loved ones, going for a run, glass of wine...maybe it's music, yoga, reading, Tiger King, or a spontaneous personal dance party. Whatever it is, make some time to center, focus, check out or unwind: whatever helps you to reset each day.

Humor
One of the best things my husband taught me during this last round of surgeries was that laughter really is the best medicine (aside from painkillers). Keep things light. Find ways to bring levity to your situation. Watch stand-up shows and comedies on the streaming services. (Go for nostalgia with Seinfeld or The Office and it's a double dose of good vibes.) Call that friend that makes you laugh until your stomach hurts.

Stay positive
Staying positive doesn't mean being naively ignorant of all the scary things. It's really healthy to acknowledge and express your anger, frustration and anxiety. But at the end of it, you choose how you move forward and what kind of attitude you are going to face the next step with. Choosing to be positive means choosing not to feel helpless and hopeless. Know that you are resiliant and strong and that right now is not forever. You can do this!

Gratitude
If you are able to stay at home everyday, give thanks to all the first responders (health professionals, firefighters, police and military) and essential service workers (food service workers, farmers, government workers, post workers, trash collectors, manufacturers, etc.) who are on the frontlines of this epidemic and who are keeping the rest of us fed, healthy and safe. THANK YOU!!! Gratitude gifts us with perspective.

Let's lean into our collective resilience, creativity and generosity. We will get through this together!

Stay well and healthy!
xxx

90 days Post Op and Valuing Vitality!

It's officially been three months since my mitral valve replacement and I am doing GREAT!  The recovery this time around feels like it's been at supersonic speed compared to previous operations.  I am already back to working 30 hours a week, we've moved back into our newly restored home, we've become more socially active beings and we're getting a dog!  Hooray for new beginnings and for thriving!  (I will of course, post copious dog pics once we get him!).  All of this couldn't have been possible without the generous and loving support of our family and friends in the past few months.  The support and accommodation from everyone, especially from our parents, has been immensely humbling and we are deeply grateful.  Thank you.  We are blessed to be surrounded by a support system that values community, life and viatlity.

Today the House of Representatives in the U.S. Congress passed a bill to eliminate many of the provisions of the Affordable Care Act.  Some of these provisions include the protections for people with pre-existing conditions.  Although an amendment to the bill has created funding for high-risk pools, high-risk pools do not guarantee access to healthcare; they subsidize care but there is a cap on the amount of money available to people with pre-existing conditions.  If you consider that my most recent surgery cost roughly $500,000, the $8 billion alloted in the amendement is hardly enough to cover all of the costs of chronic healthcare expenses for all Americans across the country.

As I listened to the radio of the news of the bill passing, I couldn't help but get teary-eyed.  I know this bill still has to be passed in the Senate before it is put into law and it will take some time for it to come into effect.  Despite knowing that, I still felt hurt.  I felt vulnerable!  The bill puts us back into the pre-ACA mentality that it is ok for some people to not be able to afford good health.  It sends the message: you were born with a congenital heart defect so unfortunately you'll be priced out of your access to healthcare, bad luck!

What the discussion on the government's role in healthcare all comes down to is what do we value as a society?  Do we value individual life? Do we value vitality?  Are there some burdens that we take on as a whole, because it makes us stronger as a whole?  I have liberal friends and family and conservative friends and family and I know how all of them would answer because they have, and I am better for it.  We can all agree that there are some things we can't do on our own.  The popularity of Jimmy Kimmel's recent monologue about his son tells me that as a whole, Americans choose community, togetherness and life.

The real question our politicians should be asking is how do we make healthcare affordable for everyone?  Rather than just moving the burden of costs around, how do we bring costs down to make sure no one falls through the net?  It would be so powerful if we could answer these questions in a bi-partisan way.  Let's do it!

5 weeks Post-Op and Evolution of the Scar

Five weeks post-op today!  Woo hoo!  Apologies for my radio silence recently; time has really gone quickly the last few weeks, which is great!  My recovery has continued to be smoother and easier than last time.  I have filled my time with puzzles, needlepoint, movies, Disney Emoji Blitz and lots of family time.  It has been a restful and recuperative few weeks and I marvel at how well everything is going.  My stamina is excellent (I'm walking up to 2 miles a day); my mobility is fabulous (great chest and torso flexibility); and I'm transitioning into regular activity steadily (making food, doing laundry).  My energy levels are a bit up and down but I'm going in the right direction.

I visited the cardiologist last week and everything is looking good.  I have a little bit of fluid in my lungs still but that's normal; it can take a few months for fluid to be reabsorbed.  I'm staying on top of my incentive spirometer, staying active and will remain on diuretics a little longer.  My INR levels are in the target range and I haven't had any issues with the Warfarin.

I couldn't have dreamed or hoped for a better recovery!  And really all of this is thanks to the extremely talented group of people at Keck USC Hospital. Not only was my hospital stay flawless in terms of care, expertise and professionalism, but the speed and smoothness of my recovery at home is also confirmation of the caliber and quality of the care I received.  THANK YOU Dr. Starnes & the entire Cardiovascular Surgical team and Department at Keck Hospital.  Thank you!

As further testament to the surgical team's expertise, here's a fun look at the scars from different heart operations.  In my humble, unbiased opinion, my current scar is the best of them all!  Props to the closer(s)!

The evolution of the scar...

1985: Coarc Repair Scar

2015: 16 years post-Ross Procedure Scar

2015: 1 week post-Valve Replacement

2015: 4 weeks post-Surgery #3

2017: 1 week post-Mitral Valve Replacement

Today: 5 weeks post-Surgery #4

Successful surgery...again!

Whoo hoo! We did it again! Another successful surgery in the books!  It has been exactly one week and one day since my surgery and I have been home for three days.  So far, no more readmissions! (knock on wood).  I am feeling pretty great overall; every day passes with waves of feeling good and not feeling good but I do feel more energetic and more pain-free this time than last time around. So here's a blow-by-blow for those interested:

Getting ready to go in

We checked into the hospital on Tuesday, January 31st at 6.30am.  This time I was given a GPS tracker device to wear which enabled my family to follow my whereabouts throughout the day on a big screen TV.  Fancy!  I checked into pre-op, got my lines started, donned my puffy hat and snuggled into my cozy gown with a built-in heater.  After saying goodbye to my entourage of family, I was taken into the OR where they struggled to get my arterial line started.  This was to be a theme throughout this hospital stay...everyone had trouble accessing my tiny veins.  (I missed you, CHLA pediatric nurses!).  I reassured the team and told them I appreciated how frustating it must be to get into a tricky artery.  I remember the breathing mask going over my face and then I was out. 

Right after being de-intubated

I awoke about 5 or 6 hours later as they wheeled me into the ICU.  I remember hearing a nurse say, "I've never seen anyone so happy coming into the ICU after surgery!"  Apparently I was smiling and waving, even though I was still intubated.  Ha!  I learned from my family that Starnes had (unsurprisingly) done an incredible job and successfully replaced my mitral valve with a mechanical valve AND my aortic valve with a mechanical valve!  Two for one!  You might be thinking, wait a second, I thought she was just getting her pesky mitral valve replaced.  That WAS the plan until the week before the surgery when I spoke with Dr. Starnes and he suggested replacing the aortic valve.  Here's why: the bioprosthetic valve he put in the aortic position 18 months ago will most likely only last me about ten more years.   It would need to be replaced via another open-heart surgery.  Since we're going in now (earlier than previously anticipated) AND since I'm now going to be on blood thinners (Warfarin / Coumadin) for life, why not get the bonus longevity of another mechanical valve and save myself from another open-heart surgery for possibly 30 years!  I am SO game for that.  That Starnes is so clever!  (I made sure to tell what a good job he did when he visited the ICU--I think he was amused!).  Apparently when I was still intubated in the ICU my family told me that I had two new valves and my face lit-up as I mouthed the word "WOW" while holding up two fingers.  Gotta love pain meds.  :)  I also learned that I had lost a bit of blood so they gave me about a pint of blood...a first for me!  Yay!  Check that off my bucket list!

Sitting up Wednesday morning

By Tuesday evening I was extubated and by Wednesday morning I was sitting up, showing great color and had ALL three chest tubes removed!  Talk about an overachiever!  I was eating clear liquids by the afternoon and if there had been a bed available in the step-down unit I would have been transfered over Wednesday afternoon.  Since the hospital was pretty full; I stayed another night in the ICU with some of my favorite nurses: Stacey, Summer and Jing.  By post-op day 3 I was transferred down to the VIP room on the step-down floor and was walking laps around the unit with the OT and the PTs.  (THANKS for the room, BARB!).  My vitals continued to look good Thursday and Friday and once the plumbing got moving they decided to discharge me on Saturday afternoon.  Woo hoo!  There was one last exciting event as I was being discharged.  My last IV was removed and I applied pressure before the nurse dressed the arm.  As I started putting on my clothes I put my arm through my shirt and my forearm came out covered in blood!  Ryan immediately stretched out his long arm and cupped my forearm with his hand, applying pressure while my mom called the nurse.  Welcome to blood thinners!  This was a good reminder to me and Ryan of our need to be extra careful about cuts, bruises, injuries, etc.  Ryan passed with flying colors.  And now I can officially announce that I will never play hockey and will always drive the speed limit.

Resting at home

This time around, my energy, stamina and color in the hospital seemed to far outpace my last surgery.  It was both a blessing and a drag to have surgery again so soon.  I felt more mentally prepared going into this hospital stay than I every have before and I also felt more positive because I knew what to expect, what to be patient with, what to push myself on and when to go easy on myself. The fear and unknown was removed; that was a huge blessing that I think greatly contributed to my speedy recovery.  The drag however, was that none of this was new or novel, I knew too well what to expect and so it was instead tedious.  I am confident and hopeful that I will not have to do this again for 30 or 40 years and I am so happy.  As easy as I might make this look, I'm ready to take a break from surgeries for awhile.  Thanks, Dr. Starnes!

I will post again soon with details on recovering at home, my recent doctor visits, my new scar! and diet implications for Warfarin.

Thanks for all the love, support, prayers and good thoughts!

Here we go again...

Ok. So 2016 turned out to be an interesting year.  No matter what camp you find yourself in, we can all agree that the country is pretty divided and that politics in America are being reshaped.  With a 40% approval rating for the president-elect right now, it seems the majority of Americans are feeling either disenfranchised or just fed-up with politics.  So where do we go from here?

On Nov. 8, 2016 (Election Day) I had a catheterization that revealed my mitral valve wasn't functioning well.  The median gradient across my valve was 26 (max 50) and it's suppose to be lower than 10.  After a visit with the surgeon in December we decided that it's time to finally replace that pesky mitral valve.  I'm scheduled for mitral valve replacement surgery on January 31 at USC with Dr. Starnes.  Here we go again!  Whoa!  It's kind of surreal to be doing this again so soon.  It's even more surreal to go into this on the verge of the repeal of ACA, with an unknown future for my access to health insurance.  So where do I go from here?

We keep swimming (thanks, Dory); we soldier on (thanks, Sherlock); we just keep moving forward.  And we hope that we will carry ourselves with compassion, grace and kindness towards others.  My last surgery was not so long ago that I can go into this next surgery with naive optimism.  While I am optimistic about a quick recovery and a positive outcome I also know too well that the next 3 to 6 months will be a lot of hard work.  There will be pain, frustration, demoralization, a loss of independence and just a whole lot of not feeling good.  As one of my colleagues said, "it just sucks".  BUT there will also be laughter, comraderie, self-growth, binge-watching Netflix, coming together of friends and family and the prospect of good health once and for all!  (If they put in a mechanical valve, I may get another 20 to 30 years free from invasive surgery.)  So you know what?  I'm game!  We can do this!

This time around I know all the things that will help to carry me through this next surgery (In N Out, Netflix, jigsaw puzzles, prunes, cursing, fleece throws, etc), the most important of which is my loved ones.  The love and support of family and friends is what strengthens me and emboldens me to fight--to strive to be my best self.  We are stronger together.  We can achieve more together.  We can be our best selves, together.  So bring on the cards, notes, messages, meals and visits.  Get involved in your local community: volunteer, donate, organize and get active.  Let's do this!  Strive to be your best self!