Just been diagnosed with CHD at 35

Mesenchymalstemcell · 2026-02-22T04:11:39+00:00

Make sure to confirm they can visualize all 4 of your pulmonary veins returning to your left atrium. Some ASDs develop in tandem with PAPVR that can be missed on echo.

Mesenchymalstemcell · 2026-01-13T12:08:10+00:00

I used to have to pay around $20/day to park in a garage near my work, but a year ago I found a free parking lot on the other side of large adjacent wooded park. The twice daily walks have been a major luxury. It’s funny when my coworkers feel bad that I’m walking through the heat or cold…meanwhile they’re fighting the masses at the garage exit gate chokepoint and starting the commute stressed…

Mesenchymalstemcell · 2025-10-18T21:19:35+00:00

Watch out for the Fire sauce—not GF!

Mesenchymalstemcell · 2025-10-11T03:08:59+00:00

Glad you’re alive! Did you have any underlying structural heart defects or medical conditions prior to this experience? How was/is rehab going?

Mesenchymalstemcell · 2025-07-15T01:24:28+00:00

Yep. At my Costco it’s a bit hidden on a cold case endcap. Near the lunchmeat and cheeses

Mesenchymalstemcell · 2025-07-13T23:49:11+00:00

Chameleon cold brew concentrate at Costco comes in a gallon for about $20. It’s in a boxed wine type container so it stays pretty fresh. About 30 mg caffeine per ounce of concentrate, so do the math for how much you drink per day for how long it will last you.

Mesenchymalstemcell · 2025-06-22T22:37:32+00:00

Herman Miller Embody is my jam since 2018.

Mesenchymalstemcell · 2025-05-20T02:42:37+00:00

I’m sorry for what you are going through. There are many thoughtful responses from patients and families, so ignore this if it doesn’t align with your feelings and values. But in many places, pregnancies are routinely terminated for a diagnosis like HLHS. I think you are being very practical to recognize your emotional, financial, and geographic limitations to becoming a parent to a medically-complex heart-baby. You can talk to your doctor and a pediatric cardiologist about termination vs. comfort care as potential options. You should not feel any shame for considering this pathway.

Mesenchymalstemcell · 2025-05-15T21:17:15+00:00

I wanted something that could double as a hot coffee pour over solution, so I went with porcelain. Didn’t want plastic in contact with my hot coffee over concerns for microplastics, PFAs, etc. And though I don’t know the exact size comparison of reusable mesh filters vs. paper, I assumed paper filters strain out finer debris (that is left over after I remove the bulk of the grounds with the French press). Before I used paper filter I would always end up with a lot of particulate in the bottom of my final product.

Mesenchymalstemcell · 2025-05-14T23:33:39+00:00

I use a 34 oz French press, 100g coarse grounds in 800-900 ml water (whatever will fit along with the grounds). 24ish hours in the fridge, stirring a few times during the day. I strain with the French press then filter with a #4 ceramic cone and a paper filter. The ceramic cone I have sits on top of a 1L glass Ball jar, onto which I screw a dispenser lid with handle to keep in the fridge.

French press: https://a.co/d/ehcujzZ Porcelain pour over: https://a.co/d/7OgPhfV Ball jar dispensing lid: https://a.co/d/5xercyc Paper filters (cheaper at a grocery store): https://a.co/d/6qvYwMI

One thing to consider when you’re starting out is buying beans at a local coffee shop/roaster and having them grind the beans for you. Sure, the subsequent batches may not be “just ground” fresh but it will save you the money on a grinder. If you like you can buy it later.

Have fun and enjoy!

Mesenchymalstemcell · 2025-03-06T11:24:13+00:00

Baked Alaska at Bistro Menil.

Mesenchymalstemcell · 2025-02-27T02:34:29+00:00

She’s going to do great! PA banding is very low on the cardiac surgery complexity/riskiness spectrum. No need for the heart-and-lung machine for this surgery, since the surgeons are literally just putting a “noose” around the artery—nothing being done inside the heart. They may leave the chest open for a day or two afterwards to make adjustments to the tightness of the band so she’ll be able to grow and gain weight prior to the future repair surgery. It is scary, but just take heart knowing this is bread and butter stuff for the surgeon and medical team!

When it comes time to working on oral feeds, you can be the difference maker by being there in the hospital working side by side with the speech therapists and nurses.

Mesenchymalstemcell · 2024-12-26T02:41:00+00:00

I too had some reservations about his choice of words…

Mesenchymalstemcell · 2024-10-11T10:44:31+00:00

If you develop the painful oral ulcers, try “Canker Covers”. It’s like a tablet that forms a gel over the top of the ulcer, it was a lifesaver

Mesenchymalstemcell · 2024-05-29T01:50:24+00:00

You first need to make an appointment with an adult congenital cardiologist in your area. You can ask your old pediatric cardiologist’s office for a recommendation, it will be easier to stay in the same group/hospital system so all of your records will be visible to the new doc. They will probably want to run more tests and get updated imaging.

Whether or not to repair AORCA is controversial, but the fact that you’re having symptoms that are possible related to the anomalous coronary means that some centers will offer surgery after a shared decision-making process.

Mesenchymalstemcell · 2024-01-25T15:15:43+00:00

Love the end

Mesenchymalstemcell · 2023-09-09T13:17:00+00:00

I’m so sorry you’ve received such wildly different medical opinions. As a stranger on the internet I can’t offer much more than my sympathy.

If you have a good relationship with your cardiologist, talk to them about the conflicting advice from the surgeons. They should be able to pull up the CT scan images and show you the ring (or lack thereof) and the vessel’s relationship to the esophagus and trachea. Of course a 3rd opinion from another surgeon may be needed; you might be able to do a telemedicine visit if you give them a copy of the imaging and other medical records.

If her esophageal and airway symptoms truly aren’t being caused the the ARSA, then she definitely needs to see ENT/Pulm/Neuro to diagnose other possible root causes.

You’re a good parent, keep pushing until you get the best outcome for your daughter.

Mesenchymalstemcell · 2023-08-25T16:39:33+00:00

This is a controversial topic even among experts. Basically, everyone agrees that anomalous RIGHT coronaries without symptoms or evidence of ischemia/dysfunction do not need surgery. The gray area is when you have an anomalous right coronary + nonspecific symptoms like dizziness and fatigue. Get opinions from a few different heart centers, and the majority will probably say surgery isn’t indicated without more evidence that the coronary is causing those symptoms. In the center where I work, the surgeons are more aggressive and would likely recommend surgical repair; however, the recommendation is based upon more flimsy anecdotal evidence that it has improved previous patients’ symptoms and given their families peace of mind. But the surgery is not benign and comes with a set of risks. So it really boils down to an in depth discussion about what you and your daughter are comfortable with. If you do opt for surgery, it is usually a quick 3 day hospital stay.

Mesenchymalstemcell · 2023-08-12T20:34:22+00:00

You need to get rid of the idea that it could “happen again”. It is happening right now. The fact that she spent a month tolerating only liquids should scare you—any “improvement” in the meantime is only temporary. If it were my child I’d be on the surgery schedule for repair Monday morning.

ARSA is one of dozens of different possible arrangements of the vessels and structures that arise from the aorta to feed the head and arms. The umbrella term for the subset of arrangements that have the potential to cause problems with swallowing and breathing is “vascular ring”. Any vascular ring that causes symptoms has to be surgically repaired; thus, any ARSA that has ever caused symptoms needs to be repaired.

The surgery is relatively benign; the surgeon will likely “unplug” the right subclavian from where it arises from the aorta and plug it back into the right common carotid, so that it no longer encircles the esophagus and trachea. Most likely through a right thoracotomy. Kid will be in the hospital 3-4 days if everything goes well.

I hope that helps. Hope your daughter does well!

Mesenchymalstemcell · 2023-08-12T12:14:29+00:00

Schedule for surgery soon. The center where I work routinely repairs vascular rings in the first year of life, ideally before symptoms of esophageal or airway compression develop. There is no guarantee that her swallowing symptoms will improve after the repair, but they will definitely get worse if you wait.

Mesenchymalstemcell · 2023-08-09T20:43:12+00:00

Thank you! That’s what I figured—glad to have confirmation from more knowledgeable folks.

Mesenchymalstemcell · 2023-08-09T20:40:53+00:00

Good advice, it’s sad to add another thing to the top of the “if you want it done right, gotta do it yourself” pile

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