Bri’s Heart Journey

11/13/2025

Big day next Thursday.
1:00 call with Northwestern/ Lurie Children’s in Chicago with the ACHD / heart failure doctors

2:15 meet with the advanced heart failure team at the U of MN.

10/31/2025

We were able to leave the hospital. Labs came up a very small amount, but an “ok” amount to not be inpatient. Should be around 5.5 and sitting at 3.2, when we got to the er it was at 2.6. After multiple rounds of a few different meds my heart is back in normal rhythm. Labs have to be rechecked on Monday. Patiently waiting to see the heart failure team at the U of M, and Chicago.

10/31/2025

Say some prayers for Bri please. She was doing fine this morning and all of the sudden got very tired and her heart started to go into an abnormal arrhythmia. We went to acute care and got sent to the ER. Getting multiple bags of iv medications. They are trying to keep us out of the hospital for Halloween. We just started the 2nd round of iv meds, along with oral medications. We will check labs again when these are done, and if they aren’t up drastically we will be admitted.

10/30/2025

Wanted to post an update. The beginning of this week I wasn’t feeling very well, very tight chest, pitting edema, up 7 pounds in fluid, cough, shortness of breath etc. We did a double dose of my diuretics for a dew days, all the symptoms went away and my weight came back down. I saw the heart failure team in Sioux Falls today, they are doing as much as they can for me but today they put in a referral to see the advanced heart failure doctors at the University of Minnesota. They got on this as soon as I left my appt today and I got a call this afternoon. I will be seeing the team at the U of MN on November 20. I then follow up with the Avera heart failure team a week after that, and then the U of MN team on January 14th. I am waiting to hear from the doctors in Chicago as well.

10/21/2025

Just want to update everyone I sent the team updated pictures over the weekend. I reminded them yet again that this is ALL from the sutures. After going to the wound clinic and having multiple sutures pulled out, the incision is almost closed. They decided to cancel the surgery tomorrow. I’m very glad about this, but still annoyed because if they would ever listen I never would have been in this spot.

10/19/2025

Friday afternoon I received a call from the heart Hospital. My device I had put in 3.5 weeks ago has still been trying to close and multiple sutures have come out. The doctor reviewed photos and I have to go in for an emergency device removal Tuesday at 11. I will be sedated for this. He said the device is infected and given it’s right above my heart it has to come out asap before I turn septic, or the infection gets in my heart.

10/15/2025

Today I was started on jardiance. This originally was a diabetes medication and is now FDA approved for heart failure. The hope is that adding this will help with fluid levels in my body. I had heart failure/ bmp labs checked yesterday. Despite being on 3 diuretics I have been retaining so so much fluid, and this cough is too much. I’ve been having chest pain as well. I also have to start wearing compressions socks 🥲 I’m way too young for those in my opinion lol.

I talked with Lurie’s in Chicago on Monday. They will see me, and due to being such a high risk/ complex case there is peds and adult CHD/ heart failure doctors on my team in Chicago. The np couldn’t believe everything. They are looking at all my recent imaging/ tests, and everything that has gone on in the last 3 years. I will then do a zoom with the team and they will tell me the diagnosis, and what treatments are needed. I’m thankful this is happening because I need answers.

10/10/2025

Small update 🫀
My device I had implanted a little over 2 weeks ago went well. The bad part was I had an allergic reaction to everything, and I’m not healing. I have had multiple sutures keep popping up, and am back at the wound clinic. I don’t heal well anymore.

I will also be getting a 2nd opinion on every single thing, the CHD, heart failure, every single issue I deal with. I have a phone call at 9 am with the heart failure/ cardiovascular disease/ surgery team at Lurie Children’s Hospital of Chicago. They will see me because of the CHD. The nurse then will help find the right doctor and they will have all of my records from Mayo Clinic, the University of Minnesota, and Avera here in town. I am very excited because all I want is to feel better. It is still the same crap different day, but hopefully Lurie’s will have an answer for me.

10/02/2025

Update - I had my monitor put in a week ago. I have definitely been very sore but it’s gotten better as the days go on. The first few days I felt pretty gross but thankfully it’s gotgen better! I’m still pretty bruised, I was able to take the bandage off today and it’s not closed yet, but it’s okay. I talekd to the heart hospital and we are keeping an eye on it. We added scar #8 to my chest last week🫀💪🏽
Still on all the meds including my injection:)
Here is the link for the shirts, I appreciate the support♥️

https://www.customink.com/g/hyu0-00cz-zaf8

09/28/2025

1 week left!! Get your orders in! I appreciate it!

Hi everyone. I’ve had a few people ask about hoodies and T-shirts with the logo! If you would like to purchase, I have started a group order!! Thank you everyone ♥️
Here is what they look like, there is a few options! The link is attached as well!

https://www.customink.com/g/hyu0-00cz-zaf8

09/24/2025

I know I’ve asked a lot over the years…but another round of prayers would be greatly appreciated as Bri has just been taken back for her procedure ♥️

09/22/2025

Hi everyone. I’ve had a few people ask about hoodies and T-shirts with the logo! If you would like to purchase, I have started a group order!! Thank you everyone ♥️
Here is what they look like, there is a few options! The link is attached as well!

https://www.customink.com/g/hyu0-00cz-zaf8