Bri’s Heart Journey

Bri’s Heart Journey Follow along for Bri’s Heart Journey. Bri was diagnosed with a “fatal” congential heart defect at 20. She since then has had multiple open heart surgeries.

09/03/2026

This seems small to most… but today I had to get labs. We used my port and it flushed and blood drew back from it 🙏🏼🙌 last week it was a bit nerve wracking.. having blood clots in a central line is scary as the line goes to my heart♥️

This is the med that saved my heart after surgery. I’ve been on this for a year and a half. Today I started my final tap...
09/01/2026

This is the med that saved my heart after surgery. I’ve been on this for a year and a half. Today I started my final taper dose. Hopefully 2 months left of this and then the goal is to come off, I may have to buffer with possibly prednisone and colchicine again at the end of this. This is an IL-1 blocker, stopping infections from going around and into my heart. Praying I don’t get sick heading into fall and winter 🙏🏼 A bit nerve wracking being on the lowest dose I’ve ever been on.
My Mayo doc let me know they have not had to do this with someone in my situation🫣

https://gofund.me/a7aa2d555

08/27/2026

Clots were cleared from the port/ central line thankfully after 2 hours, on the final try blood drew back from the port! I see the ep team locally on Monday morning, the pericardial disease doctor at Mayo Clinic September 8th, and the heart failure team here in Sioux Falls September 10th.

Made it back home safely, but frustrated we got no new answers. I will update as I know more with these appointments coming up.

I saw the heart failure doc this morning at Mayo. He reviewed my labs from yesterday and echo. My labs looked great yest...
08/26/2026

I saw the heart failure doc this morning at Mayo. He reviewed my labs from yesterday and echo. My labs looked great yesterday, and my echo looks “stable”. My ef is reduced a little bit, but with the heart failure with preserved ejection fraction that’s pretty common. My hf lab yesterday was normal… this is good, but at the same time he couldn’t see my Avera labs that have been around 700-1500, which was a bit frustrating. I did not learn much info, he told me multiple times I have a very complicated cardiac history, how tired I look, and maybe I have sleep apnea - test was negative for this. He is adjusting my diuretics a bit to see what it does. He questioned every med I’m on, the devices I’ve had implanted etc. I’m a bit frustrated, because my hope was getting answers. Not just the same thing again. My port is also not working, it has been flushed so many times, no blood return. We have tried for 2 hours the last 2 days to get this to work. They put me on a alteplace protocol, which is essentially a very strong blood thinner. It breaks up fibrins and blood clots inside the port or central line going to my heart. This takes anywhere from 30mins to 2 hours. So I’m waiting at Mayo Clinic while on this protocol in hopes this works.

08/23/2026

Small Update🫀

I’m feeling much better since having the heart failure device put in last week, it took me down for a few days but feeling better. It’s a huge adjustment to get used to doing the readings every morning. This device just monitors the pressures inside my pulmonary arteries. I leave for Mayo Clinic tomorrow. I have multiple tests including labs, echo, ekg, sleep study, 6 min walk. We had to cancel the exercise test because I’m still in a boot, and just had this device put in. I then meet with the heart failure team once all of this testing is done. Send some good vibes/ prayers we get some answers.
I’ll post updates this week♥️

The shirt link is only open a few more days! It would mean so much to me!!
https://www.customink.com/g/hyu0-00d3-889z

https://gofund.me/cdfb6122d

Little update.. doing ok today. Started new meds today to help with blood clots. Also taking some pain meds to help with...
08/13/2026

Little update.. doing ok today. Started new meds today to help with blood clots. Also taking some pain meds to help with the chest pain, it’s not as severe as yesterday but pretty uncomfortable. Thankfully my heart has been beating normal today, and no more throwing up. Yesterday was rough to say the least.

https://gofund.me/4efb5b93e

Bri Strong Shirts ♥️
https://www.customink.com/g/hyu0-00d3-889z

08/13/2026

Bri was able to go home… they did a stat echo and ekg and thankfully those looked ok. EKG showed some changes but those have been seen in prior EKG’s. The device was placed. The surgeon only had trouble getting the central line into neck due to scar tissue from having multiple central lines/ heart caths. After a few rounds of fentanyl/ versed the chest pain started to let up and we were able to go home tonight.

08/12/2026

Please say some prayers for Bri.. lots of chest pain. Given quite a bit of pain meds, doing an ekg and echo

Bri is getting ready to go back. Surgery should start at about 4:00, and it should take about an hour and a half. Depend...
08/12/2026

Bri is getting ready to go back. Surgery should start at about 4:00, and it should take about an hour and a half. Depending on pressures and how everything looks she should be able to go home tonight.

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