Lisa's Journal

I am almost 2.5 years out from my mitral valve repair. I did not have symptoms before surgery, but after I was scheduled for surgery, I had some swelling in weird places - my left forearm and my knee and lower thigh. The swelling is back, and I have noticed a slow change in my ability to handle stairs and walk up hill without feeling really tired. I had an echo that showed no significant changes so I am now preparing for a TEE next week. It's funny, but I am more concerned if they don't find something with my heart...what else could be wrong? Ugh!!

My surgery was in May 2016 and I plan to celebrate every year! I finally have the best Cardiologist and have been visiting other heart surgery patients to encourage them to attend Cardiac Rehab and Support Group meetings. The biggest "recovery" was the mental stress of what I've been through, but I am light years ahead of where I was two years ago. So much more educated and of course having the experience behind me helps! My health overall has been good. I have been feeling dizzy recently so I am trying to do less beta blocker to see if that helps. It's too soon to tell. I also found that a portion of my sternotomy scar has been feeling tight and bugging me because I feel it all the time. So I had a dermatologist break down the scar with an injection and it feels so much better! I guess I will need to maintain that to keep it comfortable. I also attended another WomenHeart conference and got to meet with the California Senator's office (Dianne Feinstein) to promote heart health initiatives, especially to include women in heart research. Will post photo next!

So happy to be attending the WomenHeart symposium at the Mayo Clinic in Rochester, MN in a couple of weeks (Oct. 6). I have been attending monthly support group meetings locally (in San Diego), with the hope I would connect in person with someone else who's been through OHS or with valve issues. No such luck yet (all heart attack survivors)! But I am now going to co-lead my group and my goal is to recruit other surgery patients. I am so excited to be educated by some great doctors at Mayo about general heart issues and learn how to encourage others to take advantage of a local women's forum for the emotional part of our recovery. The mental and emotional pieces are so important to a healthy recovery and it's awesome to feel such encouragement on this site - it's helped me so much over the last 18 months! If you are attending the WomenHeart symposium, please let me know :)

Truly, I should not complain, life is good, I can do my normal activities without issues. I have learned to love swimming and I'm enjoying the pool this summer. I got to catch up with my only other friend who's had OHS and I have a new cardiologist who is wonderful. But still, I can complain! I can still feel down even though things are up. I still look at my scar and feel bummed that I "see" it everyday. My heart has been skipping beats and feeling floppy for weeks now but I wore an event monitor that showed nothing terrible. Some how, that did not make me feel better. I suppose I just need to talk about how I feel right now and it's not easy to find someone who doesn't mind talking "hearts", medication and doctors in obnoxious detail. I love reading the amazing stories and updates from fellow heart valve surgery friends on this site. Your stories - happy and sad - are healing!

I finally changed cardiologists this week. It was a stressful decision because I switched to her after careful consideration, and I will still see her from time to time at the medical office...and I am a worrier by habit! But I always felt worse after my visits with her. Of course my new doctor is on vacation, so I continue to wait on more info about what left atrial enlargement means for me and why mine is so bad :(

It's really hard to be patient when doctors are out on vacation! It seems to be bad time of year to have pressing questions. This happened post surgery for me last year as well. When I got home from the hospital, all my doctors took a week or two off!!

A bit sad today since I got the results of my 1 year post surgery echo. My left atrium is severely enlarged and getting bigger since surgery. I don't feel any afib which is what the docs suspect, so I will start an event monitor tomorrow. They say that an enlarged atrium is not a reason for repeat surgery, although it is part of heart failure. So what do you do with that? Anyone else have left atrium enlargement and did it get better over time?

Reaching one year recovery was a big deal! I loved celebrating with others on this forum and have been really looking forward to making that milestone myself! May 3rd was the official day, but I've been celebrating all month. I am surprised, but it really did take most of this year to feel myself again. I still think about my heart all the time, but not to worry...this past year has taught me a lot about how to turn a frown upside down :) The strangest thing is that in a year of seeking out other OHS folks in my local community (heart groups, friends, family), I've only met one person. Oddly enough, it was my best friend from 3rd grade. We lost touch in our late 20's, got married, had children…our paths never crossed. We reconnected at Christmas and learned she's had 2 OHS, also for mitral valve, so we have lots catch up on! I was a bit obsessed with my healing scar, so thought I would share my progress over the last year. It still itches and feels tights from time to time so I am visiting a cosmetic dermatologist to see what can be done. If anyone has any experience, I'd love to hear! (Had some trouble posting picture of scar and text together...so I think picture is separate).

Happy to say I finally found a beta blocker I feel good taking. It's bisoprolol (Zebeta) and although it's only been a few weeks, I could tell right away this one worked different in a good way. It is a selective beta blocker so it targets the heart differently, but the end result has been a much lower heart rate and blood pressure. At first the numbers scared me - 52bpm and 98/68 - but I have felt ok, not lightheaded or falling over! And now the numbers are going up a bit as my body is getting used to it. I thought I would feel much more sluggish as well, but for whatever reason, that has not been the case. Since I am taking a beta blocker specifically to extend the time before I need another surgery, it's affect on my heart rate was really important. I read so much online about these meds and how other folks have tolerated (or not). Just as many people have bad experiences as good, so I know I need to take my "research" with a grain of salt since ultimately you don't know until you try it. I am just glad to have an understanding doctor who lets me whine and complain when I need to :) Happy Heart Valve Disease Awareness Day!!

It's been about 4 weeks and I am not getting used to this CCB. I changed from Metoprolol (beta blocker) to Diltiazem mainly because of how tired I was on the beta blocker. But the Diltiazem makes my heart flutter and beat really hard. I have migraines even though this is given to people to prevent them! And although I am definitely not as tired, I am low energy if that makes sense. Both meds keep my BP low, but my heart rate is lower on the beta blocker and I kind of like that. Since my heart rate is higher on this med (low 80's), I feel like (imagine) my heart is working too hard. The flutter is also very strange, it makes me uncomfortable but I wonder if these symptoms will go away. Not so easy to experiment with these meds! Wondering if anyone else can share their experience with BB vs. CCB?

I had a recent echo to check on my repaired Mitral Valve and heart function. The follow up was needed because I have known that I still have moderate regurgitation, which reappeared shortly after surgery. Although I don't have any blockage issues, my valve has an odd anatomy and made it difficult to repair. The regurge I had before is better, but not gone. The good news is that my heart is back to normal size and functioning normally. My EF rate has gone down a bit since surgery, but still in normal range. I did try a change in medication to combat my tiredness. I went from the beta blocker Metoprolol to calcium channel blocker Diltiazem. And although it did help a lot (and now I know how tired Metoprolol makes me), Diltiazem did not lower my heart rate as well. I was feeling all my PVCs (and hard beats), and during exercise my heart rate went sky high. Not sure what I will do now, but it's all part of the journey! I have such great appreciation for the amazing gift that we are born in an era where a heart can be fixed by gifted surgeons. The heart is an amazing, complicated, beautiful thing that keeps on going even when it's in bad shape! And I know that mine may be just fine for years and years, but even at 9 months, I feel delicate in some ways. I don't brush off skipped heart beats and shortness of breath like I did before surgery because I know so much more about what's going on in my chest and I want to take care of myself the best I can. At the same time, I know it's not as delicate as I once thought, and am not letting the "what if" of my future hold me back. So glad to be part of this community! :)

While it feels like a huge milestone to think I've recovered from my Mitral Valve Repair for 6 months, reality is I am reminded everyday that I am not done recovering. For some reason, I am just now starting to be very tired and it seems like I can feel the heart clip on my left side. My blood pressure is low (100/69), and maybe that is part of being tired. i know all the heart meds I'm on make you tired as well, but weird that it's just starting to bother me now. I am very grateful for all I've learned on this journey, and so glad to share in the journey with so many cool people! So great to have a place to swap stories!