Bri’s Heart Journey

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

09/18/2025

🫀 1 year ago
A year ago I had my 2nd life saving open heart surgery. The surgery went great but after in the ICU was just the beginning of so many complications. Afib starting it, then hemorrhaging once they pulled my femoral line. 2 days later I stood up to walk and my chest tube fell out in the hall way, 3 hrs later it happened again. 2 of my 4 chest tubes pulled out of my chest, then my lung filling up with fluid. A week after being home my incision ruptured- staying open for 6 month, then closing and reopening at 7 mo post op. Countless visits to the wound clinic for 7 months straight 1-2x a week, then getting an infection. Being pulled from cardiac rehab about 10 times. My heart couldn’t handle the exercise and I was never able to go back, it honestly still can’t handle much of any physical activity. The infections around my heart coming back and having to increase my steroids AFTER surgery, and start a new very strong medication called rilonocept- my shot I give myself every week. Then going back into heart failure- congestive/ diastolic heart failure. Having every symptom return, the extreme swelling, shortness of breath, cough, lightheaded, chest pain, etc. Multiple hospitalizations for critical lab levels and a “fatal” heart arrhythmia called torsades. In reference to all of this, I was supposed to be off of 95% of my meds by 3 months post op, I am on more now than ever. I take 3 diuretics every single day, and 4 if it’s getting really bad. I am at the doctor at least once a week for everything going on, I need to go so often because everything is out of whack. I’m getting labs drawn anywhere from 1-4x a week. I try very hard to do physical activity but I either send myself into the scary arrhythmia or my heart is going atleast 180bpm just trying to play some basketball, or walk my dog around the block. This recovery and year has been very hard. I haven’t felt good in such a long time. I go to the doctors for answers and no one knows. The part of my heart they were concerned wasn’t pumping good, is pumping good. There is some reduced function on the right side and the pressure is high in one of my arteries. But nobody seems to know why, or what to do besides start me on a different heart failure medication. I am hoping someone will have an answer or things magically start feeling really good and I can come off some of these meds and try to live a “normal” 23 yo life. I go in next week for a procedure for my heart to have a devide implanted.