Teegan's Journal

Hey everyone. I’m 16 weeks post op mitral valve repair and I just had a cardiac MRI because I’ve had some recurrent pericarditis.

Just spoke to my local cardiologist regarding my Cardiac MRI that my surgeons office ordered. He didn’t give me definitive answers, but there is tethering of the myocardium to the pericardium along with inflammation (constrictive pericarditis). I have an appointment with my surgeons office tmrw to discuss the treatment plan. 

My understanding is this: I will stay on anti inflammatories and possibly start steroids. they will do some genetic testing to find out if I have any autoimmune disorders that could be causing the over inflammatory response and fibrous growth. Also do more imaging to find out how severe the tethering is and see if surgical intervention is needed. Unknown if the area of the myocardium that is attached to the pericardium is large or small or is causing problems. 

I am feeling absolutely defeated with even the possibility of needing to go back in and “fix” this. I feel that everything is out of my hands at this point and all I can do is keep eating healthy and try to keep my head out of the rabbit hole. 

Thanks for listening 💕

Good morning Heart Warriors!
i am close to 7 weeks post op from OHS mitral valve repair and I thought everything was going pretty well.

Thursday I went to the ER bc I’ve had new pain under and above my collarbone (severe nerve pain when I breathe in). Along with fear I could have some bulging in my armpit on the arm that my PICC line is in. I was fearful for clots or pulmonary embolism at worst. But was worried about a possible pericardial effusion again bc of the pain in my chest. ER did ekg, echo, scanned venous in my arm, CT with contrast, bloodwork and even stool sample.

Blood work was all good but showed elevated D Dimer (normal 215-500, mine was 1069), which is why they did the CT with contrast.

Everything came back fine. No fluid anywhere, no clots, no infections….so deep sigh of relief with all that.

I’m wondering if anyone has had this weird and very debilitating pain suddenly come on weeks into their recovery??? I also experienced an ice pick headache last night and it’s back again this morning. I do normally get migraines, but obviously this is different.

If anyone can tell me their experience with weird pains in the collarbone area that radiate when inhaling please please please tell me how you managed the pain.

much love, Teegan 💕

Good morning! So, cardiology appointment went better than expected yesterday! (Reminder, I’m 3 weeks and 4 days post op: OHS mitral valve repair/median sternotomy)
Dr didn’t seem concerned about my random high BP spikes. They go into the high 150s/110ish with hr between 130-150. But more discussion about keeping heart rate down. I’m on 12.5mg metoprolol. So he said if my hr goes over 100 then I can take another 12.5mg and do some focused box breathing to drive it down. It actually works!! I got my hr down from 133 to 97 in 30 min.
There is still fluid (pleural effusion) on my lower left lung, but he said it’s small. However, we will monitor it and it may still need to be drained, but to keep walking and use my spirometer to keep the lungs getting stronger.
In regards to my actual valve….excellent repair was done by Dr Gillinov at Cleveland Clinic! He was so impressed and said it looks amazing! My left ventricle was severely enlarged before my surgery and that is why I had surgery, because I had zero symptoms. Well, my LV is already remodeling and has decreased by 1cm already!!
I had also had fluid drained off my heart last Friday (1 week and 1 day ago). They took 300ccs off and it is still off. So we are in the clear with no pericardial effusion. Thank goodness! I am still on the colchicine and he said it can help the pleural effusion as well.
I asked about starting cardiac rehab and he said yes, absolutely. He submitted a request and I am just waiting on approval now.
Last and final note, I am currently on IV antibiotics daily for a bacterial infection that they found in my surgical wound 16 days post op. My original incision opened and “stuff” came pouring out. That was on my discharge day Oct 30. I was back in the hospital on the 31 and had a debredment (reopen wound and scrub and clean the area) with wound culture. It took 8 days before the culture came back positive for bacteria. So On the 9th day I had a PICC line placed and I am now self administering antibiotics for 6 weeks. Hopefully will be finished with the PICC on Dec 19. I have an infectious disease team out of Cleveland that is monitoring this via weekly blood labs. I also have to go to the infusion center near my home once a week to get my dressing changed.
Overall, I am on the mend! Still lots of appointments and everyday I am working what feels like a full time job preparing my meds, doing breathing exercises, taking walks, wrapping my PICC before showering, slowly removing adhesive I find all over my arms and chest still, and trying to eat more to get my hemoglobin back to normal.
I am blessed beyond belief that I had such an amazing surgeon and team fix my heart. The complications have felt defeating many times, but my fiancé and mother have stuck by my side and keep me going. I am taking this one day at a time and that is the best way I’ve found to approach recovery.
Much love to all of you for also being on my team and supporting me from the beginning of this journey! This page and you guys means more to me than you’ll ever know. 💕
**I forgot to add that originally my surgeon didn’t know if I would be having a repair or a replacement. He was in a 60/40 position before surgery. My valve always looked as though it was damaged (likely from strep as a child) with the leaflet being thickened and not moving as much as the other. That could have meant the tissue is not healthy enough to repair, and replacement would be my only option. Buuuuut, turns out I had a very textbook prolapse! How amazing! 😇 So it was a very well done repair of my prolapsed mitral valve. He also placed and annuloplasty ring around the valve and it’s doing amazing.

Keep the prayers coming please! I have my follow up on Wednesday, but still working on my lung and this wound vac that is on my incision. Everyday is different and challenging in new ways. Keeping positive as best I can, but letting myself cry when I need to.

doing little exercises at the gym like walking on treadmill and leg raises with breathing between.

Boarding a plane in California at 9am tomorrow and headed to Cleveland, Ohio. PrepOp 7:15am Monday and appointments all day. Tuesday morning I am blessed enough to have my surgery. Working hard to stay positive because walking into an elective procedure that is so major is completely overwhelming.

having the support of you all here is priceless and I will keep you all up to date as much as I can. I’m going to turn my fiancé into the best “IG Boyfriend” ever! 🤣🤣🤣

you are all on this journey with me, as I am with you. Blessings and strength to all 💕😇

I met with a local cardiologist today to establish care for follow up after I get home from surgery. Dr Benvenuti (Hoag, Newport Beach) was great and was pleasantly surprised to hear me discuss my condition with so much knowledge. I didn’t realize how educated I really am and that gives me some confidence going into this. He’s proud of the surgeon I have selected and reassured me that my choice to go to Cleveland is a great one. I only have one more dr appt with my primary before I fly to Ohio on Sunday. 

I am officially counting the days, not weeks, until surgery day. Still lots of scary days, tears, moments of peace and acceptance, and then all out hysterical crying bouts. I’m keeping busy prepping my room and making sure I have what I need when I get back for recovery. BP monitor, pulse ox, pregnancy pillow, front open clothes, books, getting neighbors ready for on-call emergencies when my fiancé returns to work, meditation playlists, strength training my core, practicing sitting and standing without using my arms….am I forgetting anything?!?! Ugh….

Hello everyone! My name is Teegan and I’m 37 and in need of Mitral Repair (possible replacement). I just joined this page because I need some support. My surgery is scheduled for one month from today. My anxiety is a bit high mostly because I feel like I don’t know enough. Anyways, hello and I hope to connect with you all!