Nancy's Journal

Here is my healing update after bloodwork and visit with the hematologist.  

He feels that I have been experiencing valve mediated hemolysis, but at a low enough level that my bone marrow is compensating.  That, as well as my newly diagnosed esophagitis  may have been responsible for iron deficiency.  My takeaway is the valve repair cured the severe regurgitation, but the blood flowing out is being sheared by the repair, creating the anemia I’ve been experiencing.  I will be continuing iron supplements, and will continue to monitor hemoglobin and iron levels.  The recommendation is to continue the baby aspirin to prevent stroke.  

I have no disease, no cancer, no odd autoimmune issues.  My next task is to meet with a nutritionist to figure out how to manage lifestyle/ diet changes that are reasonable.  For now, I’m done with doctors and tests, and back to finding the awe and wonder in everyday life.  What a journey this has been.

Hi all,

After endoscopy and colonoscopy to determine if there is internal bleeding and reason for my anemia, the findings showed  no internal bleeding and explanation for anemia, and no cancer but, new incidental findings…. Hiatal hernia and LA grade C ( bad, but not as bad as D) esophagitis ( inflammation of the esophagus).  As I awoke from the anesthesia, I was told that I should eliminate chocolate, alcohol and coffee- my 3 favorite food groups and guess what? Many yoga poses that involve ab crunches and weights should be avoided. Oh, and.. I have no symptoms.  Next week is blood work looking at about 12 different issues- I’m half expecting something else to be wrong.  After all the findings, I’ll revisit the use of baby aspirin with my cardiologist.

Everyone says my heart is working fine. This is good.  Before my surgery in 8/2020, I had no symptoms, but severe regurgitation required mitral valve repair.

I’m trying to stay positive since I basically feel fine. I’m expecting my first grandchild in April and hoping to stay alive and healthy and maintain a sense of well being. Life continues to be full of surprises in all ways.  Looking for the awe and wonder in it all!

For those anticipating surgery or those in recovery with the surgery in the rearview mirror, each experience is so unique. This forum holds all of our hearts and hands to support us in the journey towards healing.  

I am now in the process of meeting with a gastroenterologist and hematologist to figure out the cause of my anemia since my mitral valve repair in 2020.  I recently saw there is research suggesting long term use of baby aspirin may result in anemia.  I’m going to speak to my cardiologist about this later in the week.  Has anyone else encountered this issue? I’m wondering if I can discontinue the aspirin.

I’m wondering if this has happened to others. I’m almost 3 years past mitral valve repair. I feel fine physically - lots of yoga, hiking, etc. After hearing about reduced ejection fraction from my cardiologist, my blood work shows low iron, hemoglobin and now my red blood cells are wonky shaped ( oval, smaller, etc). I’m waiting to discuss next steps with my doctor and cardiologist. I was very anemic after surgery, went on iron for a while and then discontinued when my numbers were normal. I have so many questions and feelings. I felt fine before surgery, but followed the advice to repair to avoid later congestive heart failure. Issues of low hemoglobin, arrhythmias, low iron, etc have only been problematic since surgery. It’s very depressing. Anyone else have this experience?

Ok, back from my cardiologist appointment.  All good with valve repair- only mild to moderate regurgitation and everything sounded good when he listened to my heart. Only issue today, the echo showed 45% ejection fraction which is lower than in previous years. Instead of adding a new medication, we will redo the echo in 3 months and do bloodwork.  I have no symptoms of retaining fluids, bloating or shortness of breath ( except as I’m pushing myself to increase my running distance. ) I feel great, have lots of energy- so my doctor was fine with waiting.  I am correct to brace myself for anything when I have these visit. I’m processing the information.  

Hi all,
Its been a while since I’ve posted or checked this site. My surgery in August 2020 in the rear view mirror. Today I had my annual echo and cardiologist visit scheduled for Tuesday to follow up. A visit wth my Primary physician in March to refill a prescription left me with a slight concern when he commented on a distinct heart murmur ( I wondered why that would be the case since my valve was repaired) . No “real” worries, but felt very anxious with memories of diagnosis, surgery and difficult recovery flooding back today. My rational mind reminds me that I feel great- 15 pounds lighter since surgery, lots of yoga, Zumba, meditation, hiking, running and enjoying life, but that little voice is trying to break through that there could be surprising bad news. I will counter that voice with deep breaths, nature, movement and being with loved ones. Knowing how much support I received from this forum, I decided to put my thoughts/ worries here. To those awaiting surgery or recovering, a reminder that all feelings are valid and support is here. ❤️
Nancy

Two years ago today I was being prepped at Stanford Hospital for mitral valve repair recommended by my cardiologist, although I had no symptoms.  This journey has been the most challenging and life changing event in my 65 years of life.  I expected the hospital stay - surgery and post op to be really scary and painful but that I would be well taken care of.  This turned out to match my expectations.  The recovery, though, held so many setbacks - anemia, mini stroke in my eye ( no lasting impact), low blood pressure, arrhythmia, depression and disappointment. 

I learned to be patient with myself, to concentrate on what is truly important, stand up for myself and let go of what I do not need in my life.  I have a daily yoga, meditation and journaling practice, Zumba, hike and visit redwoods, ocean cliffs, and wineries.  I have had the opportunity to work part time past retirement in a career that I truly love.  I have had the good fortune through zoom to reconnect with two groups of lifetime friends. I have close friends who are my family. Finally, I am blessed to have a lifelong spouse and loving adult children.

I know that I will be confronted with health challenges again in my life. Today, I am healthy and I feel fit and strong. Mostly, I feel grateful for today and that, hopefully, this ordeal has given me more time to participate and experience this life. For those in the various stages of this experience, remember you will get through this.  This forum was so helpful for me- reach out to others, talk to your cardiologist, find a therapist if you are struggling with mood, find the source of your joy ( nature, reading, cooking, music)- whatever feeds your soul and with baby steps, you will find your joy again.  

Hi all, I saw my cardiologist yesterday. Good news. He showed me the difference between my pre and post surgery echos and reiterated that the surgery was a success and my grade of 2+ regurgitation is within normal range compared to 4+ prior to surgery. We reviewed the results of my heart rhythm monitor, noting one small episode of ventricular tachycardia ( 9 beats). He felt that we could substitute the Sotalol with Metrapol ( Toprol) which I had been on previously with no issues. We will redo the heart monitor in November. I’m hopeful that I can keep up now with my hiking buddies as we walk uphill and maybe get back to my ( not so fast) 12 minute mile running. Best part is I felt heard, I feel like the surgery over a year ago did make a difference in my overall heart health, and that my cardiologist is my partner in my health ( maybe one of the most important relationships I’ll ever have)! I’m off today to Washington state to hike in Mt Rainer and visit my niece in Olympia. Today life feels open for opportunity, adventure and good health to enjoy. Thanks for listening. For those anticipating surgery or in recovery, the dark clouds do dissipate and the sun does shine again. All moments are temporary but please savor the good ones❤️ and remember the tough ones do pass.

Hello fellow heart warriors, Hoping to review my pre and post echo scans at this appointment. I want to better understand why my mitral valve repair August 2020 is considered a success when I still have moderate regurgitation. Question for those past surgery: anyone else have echo results after surgery showing moderate regurgitation? Thanks (Feeling good just troubled by this finding)

On the one year anniversary of my mitral valve repair, I flew to the northeast to visit with childhood friends- 10 days of laughing, eating, drinking, and deep conversations, I felt triumphant! The year has been traumatic, for sure. Yesterday, my husband and I visited with 2 couples where we walked to a statue garden on the Stanford campus. On our walk, I realized we were passing the hospital where I had my surgery and spent a week recovering. I must say, I experienced a feeling similar to PTSD. I have continued on medication for arrhythmia that I dislike as it slows me down for hiking and running. This Friday I will begin wearing a heart monitor for 2 weeks and hopefully stop this medication after we review the results with my cardiologist. Im hopeful that I will have an in person visit and be able to view my pre and post echos since I still have moderate regurgitation but was told the surgery was a success. I’m redoing bloodwork, as well since my hemoglobin count never came back to pre surgery level ( although it is just in the normal range). I’m still trying to grasp all of this since I was a symptomatic and not taking any meds to address arrhythmia. I do feel good, practicing daily yoga, slow hiking and running, Zumba, and enjoying life. Grateful this difficult year is over, for sure!

Hi all, I am 8 months after surgery, feeling very good, accepting that the med, Sotalol that I am prescribed for arrhythmia keeps me in slow gear when hiking or jogging. I’ve lost about 15 pounds since surgery, basically cutting out sweets, doing lots of yoga and enjoying retirement. So, bloodwork results have not shown hemoglobin and hematocrit levels back to presurgery levels but are just within normal range. I’ve been taking iron supplement, and vitamins and still at 11.9-12, while I used to always have levels of 14.3. So, while on a lovely Hawaiian vacation, I took a yoga class who by chance, ( or not), the instructor’s husband was a cardiologist. We ended up watching the sunset at their beautiful house that evening and he suggested that next bloodwork, I have my reticulite count assessed. His thoughts were that I could be experiencing hemolysis. Bloodwork just came back this morning and the count is elevated. I’m wondering if anyone else post mitral valve repair has experienced this. I have an appointment scheduled with my GP ( who did not suggest the test but was very amenable to follow up when I suggested). I have a feeling there will be nothing “ to do” since I feel good, other than monitor. But still disturbing as a result of open heart surgery where I experienced no prior symptoms, felt great and followed the advice to repair due to severe regurgitation ( to avoid later health complications) and have moderate regurgitation after ( which I’m told is not of concern). I’m wondering if anyone else has experienced hemolytic anemia after surgery.

So, after my 6 month post op virtual visit, I was told that the surgery was successful. I still have residual moderate regurgitation. My cardiologist did not seem concerned, but this has been bothering me. I’m not sure what this means for my future, how typical this is after surgery, and all the implications. I was asymptomatic prior to surgery and was told this would “ fix” everything to allow for a healthy long life. I have to stay on meds that lower my heart rate impacting exercise goals and just started a new antidepressant since the one I was on interfered with the heart rate medicine. My hemoglobin is not back to presurgery level and I’m continuing iron supplements. I generally feel good and am very active for a 63 year old. My cardiologist and GP did not seem concerned. I’m still bothered by all this and wanted to know if anyone else has had this experience.

So, my cardiologist did not schedule post mitral valve repair echo until now. I had my echo last week. I’ve also been on a med to regulate heart rate, Sotalol. I feel great but as I exercise, particularly when I go for a run or hike uphills, I feel like I’m stuck in low gear. I want to go off this medication since I think my heart rate can’t raise high enough to support high activity level. So, waiting to hear if my surgery was successful and no more prolapse or regurgitation, as well as discussion about stopping the medication, and just anxiously waiting to hear that I am fine has been weighing on me. I received a message on Friday that my appointment will be virtual and not in person. This information resulted in strong emotions of disappointment. I’m still trying to understand why I feel like I won’t get the same level of attention and care I was expecting for such important information. I’m trying to wait peacefully and patiently and will try to have an open mind. I certainly hope that this whole ordeal has made a difference for the rest of my life and that I just didn’t open a door for more problems. Sigh- lots of yoga and Netflix binge watching. I’ll know more on Tuesday afternoon.

Hello heart warrior friends, I saw my cardiologist yesterday to review results of the heart rate monitor I wore and decide next steps. I heard the best news- no significant issues, no need for cardiac MRI, continue exercising and feeling good. See you in 3 months for follow up echo. Today I ran 3 miles! Also, took a zoom yoga class and walked 3 miles. I am joyous with relief! Here’s to recovery and support! It really does happen- love to all❤️

Just wanted to express my gratitude on this day of thanksgiving. I am so grateful for this forum - all the wise, kind, and encouraging words. I am inspired by the unique connection we all share having undergone heart surgery. Thank you all for being here ❤️

I have now been on Sotalol for a week and feeling good physically . I have been continuing cardiac rehab, small runs in my neighborhood, yoga, and lots of walking. I’m initiating socially distanced outdoor visits with friends and establishing clear boundaries with those I live with to ensure self care. It’s difficult since I’m typically the nurturing figure at home. Yesterday I had my consult visit with the electrophysiologist. The latest plan is more tests to determine if my arrhythmia is problematic or not. So, next month I have to wear the monitor again ( we called it the doorbell) for 2 weeks, then in December a heart MRI. After review of these, then in January, if needed, an electrophysiology study. So, I’m certainly not in a denial stage, but since I feel good, I sure would like to forget about all this , no more doctor visits and just continue to heal and get stronger. I’m more annoyed and sad that life is not just back to normal. I’m not taking any antidepressants right now- bad interaction with Sotalol, I have exercise goals, loving family ( although I am annoyed by them from time to time), wonderful and supportive lifelong friends, two loving pups and I am surrounded by beautiful nature. So, with mixed emotion I begin this 12th week post surgery. Grateful for feeling good physically but sadly impatient with the ongoing medical road. I think acceptance and gratitude need to be my mantra for the rest of 2020. Thanks for listening.

I’m on my 3rd dose of Sotalol to even out my erratic heartbeats. I was quite anxious about possible side effects, but so far feel ok and today’s first of 3 consecutive days of EKGs did not show any scary issues. My home blood pressure cuff has not shown a reading in about a week due to my arrhythmia. This evening it worked! Cardiac rehab folks commented today that there were fewer PVCs and PACs. My bloodwork shows better numbers for hemoglobin and hematocrit levels but still below normal. I’m doing my yoga , beginning to slowly run about 3/4 of a mile in the neighborhood and walking 2 1/2 miles on non cardiac rehab days. I’m weaned off the Lexapro so a bit more emotional. But overall, feeling good energy and hopeful that the new meds will make my heartbeat more even. I won’t have an echo for a few more months and never felt any symptoms of the prolapse and regurgitation- the arrhythmia and anemia and low energy all came after surgery. I’m hopeful that the Sotalol will do its work and no more procedures ( like ablation) are in my future. Recovery has sure been an unexpected challenge.

Here’s my update: I’m finally feeling my pre-surgery energy level ( where I had no symptoms). Possibly the combination of taking iron supplements and no blood pressure meds and general healing. I’m totally enjoying cardiac rehab and have done 2 baby slow short jogs in my neighborhood. I haven’t taken my 2 hour afternoon naps for several days and am able to stay up later so sleeping about 7 1/2 hours rather than 9 hours. I’m almost weaned off the Lexapro so for now, my only medication is baby aspirin, iron supplement and today’s last half dose of lexapro. My current issue that was minor prior to surgery but now has become major is the electrical issue. The new meds prescribed for me, Sotalol had to be special ordered so I haven’t started yet. I made an appt for Friday to discuss all my questions with my cardiologist on Friday. I am expecting to begin Sunday night and then I have to have an EKG for 3 days in a row to make sure my heart is managing the new meds. The nurses at rehab feel this is a good plan since they see all my Arrhythmias on the monitor while I’m exercising. I still don’t really feel it unless I pay attention, but it doesn’t interfere with my daily life. I do have an appointment with an electrophysiologist on the 20th. This way I will have been on the Sotalol for over a week. My question to my fellow friends: anyone else have these frequent PVCs and have to take Sotalol? If so, what was your experience? I’m worried I will feel fatigued again and lose this current feeling of being “ alive” and myself. I want to follow the doctor’s advice and don’t want to drop dead suddenly, but I really don’t want to take more medication or have to have any more procedures, like ablation. I’m wondering if there are any great forums like this for cardiac electrical issues. Anyone know of one? Meanwhile, I feel good today and I like that❤️

Hi all, Today I saw my cardiologist who had the results of a monitor I wore over a 9 day period to rule out a-fib. No a-fib , but many PVCs in couplets, triplets, and one time 9 beats. My cardiologist explained how he wants me to begin a trial of Sotalol while having daily EKGs for 3 days to make sure I can tolerate the medicine. I’m almost 2 weeks off of Toprol. I’m also taking 10 mg Lexapro for the last 5 years to manage anxiety and mood ( I call it my 4-8 pill - for typical range of mood on a 1-10 scale). My cardiologist says sometimes there’s a negative interaction between the two meds- he does not believe the a Lexapro caused the PVCs. I am now considering going off the Lexapro. In addition, he is referring me to an electrophysiologist - he says he is the plumber of the heart and the doctor he is referring me to is the electrician of the heart. My cardiologist outlined some possibilities that may be considered to keep my heart beat even if the meds don’t work. He said I could continue to exercise and even slowly begin to jog in the neighborhood as long as I stop if I get dizzy. He’s not sure why I’m anemic and hopes the iron supplements will help. I’m supposed to start the new meds on Sunday night and I have daily EKGs set up through Wednesday. I did make an appointment with my PCP for tomorrow morning to discuss all these issues with him. Overall, I’m feeling quite disappointed and dejected. It’s smoky here again due to fires in Napa, the news is disheartening and I’m wondering if I should have even have gotten this surgery 8 weeks ago ( when I felt fine!) Anyone else experience any of these Electrical issues, along with mitral valve repair ??

Hello fellow heart warriors, I’m 8 weeks post minimally invasive mitral valve repair due to severe regurgitation with no symptoms. I’ve been posting my “ups and downs” with energy level and fatigue. My blood pressure has been low and I’m now one week off Toprol ( Metropol). Blood work was done showing I’m anemic and now taking iron supplements ( 2 days now). Anyone else have low hemoglobin levels after surgery or ideas why this has happened. I see my cardiologist on Thursday and will ask him.

My good energy and optimism was short lived last week. I began to feel very fatigued again, sleeping a lot and little energy. I scheduled a visit to the cardiologist with my recorded BP reading since we changed over Labor Day when I had very low readings. My readings were currently about 105/80. I was on 12.5 once a day Toprol. He suggested ( which I was going to request) going off the Toprol, getting bloodwork to rule out anemia , and electrolyte issues. I have had little appetite, wine ( which I usually enjoy) has tasted terrible, I have had night sweats and feeling pretty lousy. I’m going to monitor my BP until I see him again October 1st. Meanwhile, I got the ok to begin jogging ( slowly and for short times, I’m sure) at cardiac rehab. I spoke to him about my overall emotional well-being which has been at a low point. I’m happy to report he was responsive. I’m feeling cautiously ootopmistic❤️

I finally feel like myself emotionally and physically. I am happy to report waking up feeling energetic and optimistic for the day ahead. As a previously highly active person, beginning cardiac rehab ( 2 sessions so far) and returning to my zoom yoga classes, I am finding my center again. I feel that so much of my current status is a result of finding this forum. Overall, my surgical and medical care have been excellent for my physical well being, but extremely lacking for my emotional and spiritual well being. No one prepared me for the emotional impact following my mitral valve repair. By accident, I found this website a few weeks after surgery when I was struggling. I plan to discuss the need for my cardiologist to address these issues with patients and make sure to refer emotional supports, such as this site with patients. Physical healing and emotional healing are so intertwined- to ignore the “ heart” side of open heart surgery is a grave mistake. I realize I may not wake up feeling this positive every day, but I am grateful today for this life and the opportunity to express myself today. The words of encouragement have been so healing. I am not there yet to offer those words to others, but I do offer my best wishes to all for physical and emotional healing❤️

This morning, I begin my initial cardiac rehab evaluation and I begin next week! I am hopeful but tentatively cautious in my expectations. I am on day 3 of new blood pressure meds after dangerously low readings. I had a momentary strange experience this morning I will share with the rehab people. I turned my head and the room moved a moment later ( feeling a little Like vertigo. Then, my lips began to tingle for a few seconds. Scariest thought is I experienced some sort of TIA, mini stroke. -only lasted a few seconds and I feel fine now. I am so looking forward to having professional help to understand my body. Sometimes I feel like a new person inside of a new body and we don’t know one another. I was fortunate to have a yoga teacher offer me a courtesy zoom guided meditation focusing on patience and healing yesterday. The image of a care bear with Healing light shining out of my heart came to mind. What a journey this is - 5 weeks and 3 days post minimally invasive mitral valve repair. Love this forum❤️

At this time, 4 weeks ago, my husband had dropped me off and I walked in alone to Stanford Hospital. Due to Covid, I was on my own- a metaphor really since this experience is one that loved ones can provide support but truly only the patient experiences. Yesterday I did my treadmill visit at the cardiologist to get clearance for cardiac rehab. I am trying to scale my expectations but the idea of having somewhere to go 3 times a week for 4 weeks seems delightful. We will see. I feel like this moment is a milestone in recovery and healing that is so difficult to imagine when there are a multitude of tubes coming out of the body in a hospital bed. I am grateful to have found this forum and am reading and rereading the kind comments emphasizing patience and slowing down. Heart surgery has been the most difficult unexpected turn of events in my life thus far- I am looking forward to this experience being in the “rear view mirror”.

Hello all, I had minimally invasive mitral valve repair August 4th. We think it should be called “less invasive”. I left the hospital the 10th and have had a few setbacks with recovery. Four days home, I had to have an ER visit to rule out stroke due to some momentary loss of vision in a field of my eye. Turned out to be a mini stroke in my eye which thankfully did not result in any permanent damage. I had some A- fib after surgery so after my follow visit with my cardiologist, he has me wearing a device glued to my chest since the 21st to monitor A - fib ( which I never had before. ) By the way, I was one of those asymptomatic ones who was monitoring mvp and mod to severe regurgitation. I was highly active 63 year old - yoga, hiking, running, stretching , etc bragging about how nothing hurts. So, after this surgery, I’m questioning if I’ll ever feel better again! I’m in Northern California where we had excessive heat, power outage for 48 hours, fires nearby with unhealthy air, and a very cranky me. I’m walking up to 2-3 miles daily, waiting ( hopefully) to begin cardiac rehab soon, sleeping a lot, crying a lot and feeling very irritable with my loving family. Please tell me I will feel better again and the risk of congestive heart failure is way worse than this ordeal. Thanks for listening