Janelle's Journal

Wondering if anyone has had a Perivalvular leak after mitral valve repair surgery, and if so, could you share your story on whether it eventually went away or not?  I am 14 months post-op and still continue to have a moderate leak around the annuloplasty ring with my EF still 45-50% (EF is same as pre-surgery).  The leak and my EF likely have not improved as I have not been able to tolerate any of the recommended meds (metoprolol, spironolactone, etc) so that has been frustrating.  

Have any of the women had minimally invasive OHS where the surgeon went through your breast/around areola? If so, what was your experience like with that?  My incision is around my areola and my breast just looks "deformed" right now... it still has swelling and I'm only 4 weeks post op but I'm struggling with feeling like it will never go back to normal.

For those of you who have been through cardiac rehab or did it "on your own", I was wondering what exactly it entails.  I can't get into cardiac rehab for an intake assessment until 8 weeks post op.  Wanting to know when I can starting pushing myself more with exercise (like trying to run, etc).  I can walk 2-4 miles every day without a problem and have been able to climb the stairs to my 3rd floor apartment with a brief break in the middle or no break at all.  My resting heart rate is 100-115, can't be on metoprolol at the moment due to my blood pressure not being quite high enough.  When I get back from my walks, my heart rate is in the mid 120's.  Hesitant to try burst of running with my heart rate already being high at rest.  In cardiac rehab, do they base your "limits" more on if you're short of breath/chest pain, do they keep a close eye on heart rate..??

Just wondering if anyone else had issues with high heart rate and/or low blood pressure after getting home from surgery.  A few days after discharge I had a post op appt and my heart rate was 108, so they put me on 12.5mg of Metoprolol.  Less than a week later I was feeling lightheaded, BP showed to be consistently 80's/60's with heart rate in the 90's, have been feeling very spacey and out of it.  I discussed with my ANRP and she said I could stop Metoprolol to see how I felt but still concerned about heart rate staying too high if I stopped it.  I was off it for 3 days and my BP still stayed low, but heart rate became 100-115.  Now, I'm starting on a low dose of Midodrine to increase my BP.  Anyone else have similar issues?  I imagine it will just take time for my heart to recover, it's just frustrating because otherwise I feel like I could be back to normal activity.  I'm only 2.5 weeks post op, so I really should be ok with doing a bunch of nothing, but I have a hard time wrapping my head around the fact that I actually had heart surgery - doesn't feel real.  Had a couple rough days this weekend, felt really down, was upset about feeling like a blob doing nothing and started to get upset about how my body still looks like a mess (incisions, tube sites, bruising, etc). I know they say it's normal to have moments of feeling depressed but it doesn't make it any easier.  Feeling better the last couple days, but still feel on edge emotionally.  

Surgery went well on Friday, Dr. Gerdisch said he had a couple minor surprises in the surgery but nothing that was difficult, but surgery took a little longer than expected. Sunday I started having really bad muscle pain in my back (likely from sitting/laying so much, and I have history of back issues) and that has carried into early Tuesday morning as I write this (no sleep happening). Because I was doing very well medically, Dr. Gerdisch was going to discharge me Monday so I could be more independent and move more to reduce back pain. It was a flurry of activity in the morning getting all my lines and drains out and I had an ECHO. I was probably an hour from heading home when Dr. Gerdisch walked in and said my ECHO showed a small leak in the valve, in a different spot than where it was leaking before surgery, said there was no leaking at all at the end of the surgery. Wants a TEE Tuesday morning to see what’s going on. He cannot hear the leak with his stethoscope, so that is a good sign. He said if leak is very minor, then I’ll be good to go. If not, he wants to take me back into surgery to fix it 😭 He stated “I can’t let you leave without it being perfect”. He did mention that my valve/heart tissue was “delicate”, so that may be a contributing factor in the change since surgery. Trying not to think about possibility of going back into surgery, but if I need to then that’s what will happen. The hospital staff have been great, and I trust Dr. Gerdisch. I appreciate his need for perfection in this situation and his attention to detail.

Hi everyone! I leave in about 2 weeks for surgery. Trying to get everything together that I might need at the hospital or in the few days after being discharged. For those of you who have already had your surgeries, I was wondering if you could share what things were really helpful to have, or comfort items you brought. For those of you that traveled for your surgery, any additional suggestions for travel items? Thanks!

So I have this symptom/feeling that I've had now for almost 10 years and any doctor that I've mentioned it to looks at me like I'm crazy. After sitting up from lying down, could be after sleeping all night or just 1 hr lying on the couch, I feel a vibration/bubbling sensation near my heart/left lung when I take a deep breath. Usually after I sit up and take one to two deep breaths it goes away. I had a chest xray and VQ scan when I first noticed it and results showed nothing. Since I now have severe regurgitation (and it's possibly been there a while), I started to wonder if it was related. curious if anyone here has experienced anything similar?

I finally found my surgeon! It was my 3rd outside consult and I knew before the consult was over that this was the one. Dr. Gerdisch at Franciscan Health on Feb. 11, 2022. Huge relief to have that settled and happy I don't have to wait until Spring to have the surgery. With each step I feel relief but also new anxieties. Ready to be on the other side of this and healing.

I finally had my first surgical consult! Felt good to actually talk to someone about it! I had a video consult with Dr. Chikwe at Cedars-Sinai; it went really well. She says my repair would be a little more complicated but that she can do the repair robotically (and confidently) which I was happy to hear. She recommends having the surgery sooner than later, so I hope to aim for beginning of January when new insurance kicks in. Hoping to schedule an appt soon with Cleveland Clinic and then have appt with Franciscan Health on Dec. 2. Also have appt with my own healthcare system on Nov. 18 but don't plan on having them do my surgery. I want so badly to have a date so I can start planning but I'd like at least one more outside consult. With this first consult they said they would want me to stay for 7-10 after discharge to have my first post-op appt, and *maybe* can fly back after that. Otherwise looking at cross country car trip (CA --> FL) which sounds uncomfortable and long. For those of you who have gone out of state for your surgery, did you have to stay for a week after discharge and how did you go about going home and when? If there's anyone who went out of state to Cedars-Sinai, any recommendations for lodging nearby?