Melinda's Journal

Richard Munson  Scared is normal but by taking control of the situation is the answer. Maybe they can repair the valve and not have to replace. That should be your first question. 

John Cook  It is scary at first.  I felt numb for about a week when I was told it was time for surgery. I was able to take comfort in the fact that the risk of surgery and the recovery process is so much better now.  At a high volume facility, which Mr. Sinai has to be, the risk of surgery is less than 1%.

I had my Ross procedure surgery 27 days ago and I’m already back to doing 2-mile walks around my neighborhood.

One of the main reasons doctors recommend surgery a lot earlier than they used to is because patients have much better post-surgical outcomes with early intervention (severe stenosis or regurgitation and minimal or no symptoms).

Unfortunately, with heart valve disease, it’s always a matter of  ‘when’ not ‘if.’  It’s not something that gets better without surgery.

Always feel free to get a second opinion from another cardiologist and/or surgeon. The doctors actually encourage it. And talk to them about all of your fears and concerns.

Melinda Donahue  thank you for your comments Richard and John.  Richard, thankfully it will be (I'm told) repair, so thankful.  John, Mount Sinai has a great reputation and Dr. Adams is one of the best, as far as I have seen.  You hit right on the head, exactly what the cardio told - not if - its when and while I am so healthy - its best to do it now.  Thank you.  I just - like we all do, have so much to live for - three little grandsons and another on the way and I am so scared.

Robert Miller  Yes, get this taken care of sooner than later for many reasons. The older you get the harder surgery will be on you. But more importantly, if you have severe regurgitation, your heart's left ventricle will enlarge. This can lead to stiffening of the heart muscle, reducing the heart's efficiency and eventually leading to heart failure. Your blood vessels with also become smaller which will help maintaining blood pressure. I don't want to scare you but if you have at least two opinions that say you need surgery then get it done sooner than later. 

John Cook  It’s okay to be scared.  There will be difficult times but you’ll get through them just as I and everyone else on here did.  And the good news is those difficult times are usually short in duration.

- I was in ICU for 5 days, 3 of them were very difficult.
- I was in a regular hospital room for another 6 days, most of them were good days. (11 days in hospital is longer than most people).
- The next 7 days I had both good and bad days while I adjusted to being back home.
- Once I hit 3-weeks post-surgery, it has been almost all good days.
- I’m now at 4-weeks and I’m feeling about 80% of normal. Every day I feel a little bit better than the day before. I restart working again tomorrow. The things I can’t do, I shouldn’t be doing yet anyway.
- In 2 weeks, I start cardiac rehab.  They will get me running and cycling again.  I’ve already set myself the goal of running a couple 5Ks and 10Ks next year. When I get to where I can run a 10K, I’ll know I’m back to where I was pre-surgery.

Melinda Donahue  Robert I am asymptomatic right now with inklings of afib appearing which is why my cardio is sending me for a surgical consult.  Your comment definitely resonated. 

John why did you have stay in icu so long ?Why was it so difficult ? What happens if you do
not mind me asking 


I am so happy you both are better

Robert Miller  @Melinda I was asymptomatic also but then things did go south quickly. In any case, when you get surgery make sure they remove the appendage. If you have afib your blood can "pool up" in the heart's appendage. That can lead to clots. So make sure this is being taken care of. 

Melinda Donahue  I feel like this is the only place I can ask very emotional questions to because you are all probably the only people who get it - did you feel so afraid to get the surgery because you feel you wont wake up?

John Cook  Melinda,

There were 2 issues: The first is I had edema problems going into surgery from recently diagnosed Psoriatic Arthritis. I put on another 16lbs of water after the surgery.

I don’t really remember the first 2 days in ICU.  But the 3 really tough days I remember, I was on diuretics and had water restrictions to force me to lose all that water fast. The diuretics affected my kidney function. My electrolytes kept dropping because I was flushing so much fluid out. If my electrolytes dropped too much, I’d go into V-tach. They wouldn’t move me out of ICU until I reached my “dry weight.” I ended up dropping 21lbs of water by the time I left the ICU. I had to apologize to several nurses after I stabilized because I was not a fun guy to be around for those 3 days.

The second issue was my blood pressure was all over the place. With a Ross Procedure, they want my post-op BP between 90 & 120 for a year while the pulmonary valve gets used to its new home on the aortic side. I kept swinging from the mid-80s to mid-130s depending on what they gave me. It took 5 days to figure out the right drug combo.

I’ve had to go back on diuretics and electrolytes twice since I was discharged because I’m still yo-yoing a gallon of water (7-8lbs over 4 days). I went off them again today.  Hopefully I don’t have to go back on them again. I’m trying to be more conscious of my sodium intake this time to see if it helps.

Melinda Donahue  Oh my goodness! John I hope you continue to improve please watch the sodium. Thanks so much for sharing. 

Rose Madura  I had annual echos for as long as I can remember. I was diagnosed at age 7 after having rheumatic fever. This was back in the 1960s and my parents were told I would need OHS later in life.  So my situation is a bit different but waiting was part of my life.  Be thankful you don't have an emergency and can choose a treatment plan.  I call it a journey... Godspeed.

Melinda Donahue  Thank you so much for your post. Your words mean a lot and are encouraging. Sometimes you just don't know what to do and it helps to hear what people who are in a similar situation have done or will do

J Alexander Lassally  Not a bad thing. All about that sweet spot for when or if to intervene! I'd celebrate the news... (I waited over 4 years from initial alarm bells to the right time). 

Melinda Donahue  Thank you Valerie - that is a great term - watchful waiting. I will be following you and cheering you on! J Alexander I have been following you and am so amazed, you are an inspiration. I am happy but always have that in the back of my mind. Seeing you all makes me realize how fortunate we are!

Rich Butela  I went through that for about two years.  Echo every 6 months. Finally my stenosis got bad enough that we decided to pull the trigger, even though I was pretty much still asymptomatic.   I'm glad we did. I think going in while you're still relatively healthy makes the whole process easier.  

Melinda Donahue  Thanks Rich I agree. ‘Speaking' with you all helps a lot. Googling and statistics on some sites makes you a bit nuts. 5 year survival rates/10 year survival rates for mitral valve…. The more I read the more nervous I get.  

Susan Lynn  Melinda- It's a great question. Maybe a good one for Adam to ask the next time he interviews one of the top mv surgeons.
I have a Barlow's valve and I wasn't aware that it was any more complicated than a normal mv repair, but despite the thickened leaflets, my surgeon used a technique that didn't involve removal of any tissue - like Beyonce, he just put a ring on it! An annulplasty ring, that is, and fixed some broken chords.
At some point when you find the surgeon you trust, you'll have to spend your energy on the 'time' and let him/her worry about how the watch is built. It's easier said than done, I know, but we can't do much about our Barlow's valves, we can just have them repaired by talented, experienced professionals.
Be careful of information overload - we've all been there. Put your questions together for your prospective surgeon interviews and try to relax. Exertion - including mental exertion - isn't going to make you feel better. You'll make the right choice when you're ready.

Melinda Donahue  Following - is my conversation with my cardio 'I hope all is well with you+Im sure you are very busy!Sorry to bother you,I have a question regarding my echo stress since I was there on 9/1.Let me first say,I trust you 100% + I don't want you to think I don't.I cannot seem to understand the stress test results + am so happy my heart is healthy.I am coming for a repeat echo on 2/15 + know you are 'watching' me+feel safe knowing that.

What I don't understand is what severe reguritation is without back flow-I am assuming that's great but does it mean the reguritation isnt causing an issue?I don't understand what it means.I know you were all happy that my pressure (heart?) went right down when I finished treadmill.This is always on my mind and I am a nervous wreck.You have assured both Bob+I that life as I know it can continue,I am not in jeopardy but ever since the severe reguritation diagnosis,been consistently worried.
Melinda

His response: Hi, happy to clarify. You have severe leakiness of your mitral valve. I did the stress echo to make sure that the right side of the heart isnt having higher pressures as well. You still have severely leaky valve, but as of now, you do not meet any indications for surgery. Looking forward to seeing you in feb. You have an echo before you see me as well. Make sure to bring bob!

So...I wait until February.  

Sharon Behl  Hi Melinda, my meeting with a member of Dr. Adams' team was yesterday and this morning  his staff told me they will confirm a date with me for sometime in November.

Melinda Donahue  Wonderful news Sharon and thanks for reply. Thank God you have an appointment soon and you are not urgent. 

Melinda Donahue 
I have to go back for an echo in February.  I was so confused.  At first he told me I would be getting surgery in near future.  Went for TEE and stress echo and results show  'i do not meet any indications for surgery'.  I do not know whether to be relieved or more stressed because it is most probable.  I worry it will worsen.I know I have to trust my cardiologist.





 'I hope all is well with you+Im sure you are very busy!Sorry to bother you,I have a question regarding my echo stress since I was there on 9/1.Let me first say,I trust you 100% + I don't want you to think I don't.I cannot seem to understand the stress test results + am so happy my heart is healthy.I am coming for a repeat echo on 2/15 + know you are 'watching' me+feel safe knowing that.

What I don't understand is what severe reguritation is without back flow-I am assuming that's great but does it mean the reguritation isnt causing an issue?I don't understand what it means.I know you were all happy that my pressure (heart?) went right down when I finished treadmill.This is always on my mind and I am a nervous wreck.You have assured both Bob+I that life as I know it can continue,I am not in jeopardy but ever since the severe reguritation diagnosis,been consistently worried.
Melinda

His response: Hi, happy to clarify. You have severe leakiness of your mitral valve. I did the stress echo to make sure that the right side of the heart isnt having higher pressures as well. You still have severely leaky valve, but as of now, you do not meet any indications for surgery. Looking forward to seeing you in feb. You have an echo before you see me as well. Make sure to bring bob!

So...I wait until February.  

Sharon Behl  Hi Melinda, yes, I can imagine how frustrating the different messages are for you.  Early in my "leaky" stage (January '23), my cardiologist also began to discuss surgery but further tests showed the leak changed from moderate to mild ...so we watched and waited. It was hard to not think about my heart. Months later, subsequent Echos showed severe leakage indicating a need for surgery.  And, I was feeling fatigued, occasional swollen ankles, and experiencing near constant PVC's (pre-ventricular contractions) so I knew there was more progression with the problem.

 My advice is that you have no way of knowing if things will worsen...if...or when, so maybe once a day, pay close attention to the any symptoms you may have and then just try to let it go.  For me, they said to 1) weigh myself everyday to see if I'm retaining fluid, 2) check my O2 and blood pressure, 3) notice any changes in heart beat, and notice unusual fatigue or pressure around the heart.  

As they say, try to relax and enjoy your life!  And are those your gorgeous grandchildren in the picture? I have 4 now with one on the way.  They bring me joy every day even though some are far away (New Zealand and Nova Scotia, and one grandson, yay, here in Denver near us.)

So, I would trust your team's conclusions...at least you know they are not just recommending surgery for everyone!

Melinda Donahue  It is so wonderful to hear you are on the mend and past all of this - I am so sorry I did not answer sooner, I did not see this message. Thank you so much!!

Klara Čičić  Hi Melinda and welcome! I know it's all stressful and overwhelming but try not to worry too much, take one step at a time, educate yourself as much as possible and you will see that Barlow isn't that bad. I had my repair a year ago and I am doing fine. We are lucky to have a repair as an option! Medicine has come so far, things unimaginable before are now possible, like robotic surgery through a little hole in chest with very little pain... It is still major surgery but the risks are so very small. Odds are definitely in your favour! We are here for the support! You can do this!! 

Klara Čičić  ...and if Dr. Adams will be your surgeon indeed one day, then you are incredibly lucky and blessed to have that opportunity, trust me! :)))

Susan Lynn  Melinda - Depending on how active you are, you may not have any problem with the stress echo. My regurgitation was barely detectable when I was at rest, but under exertion that echo screen looked like a disco from the 70s! I was wiped out after only a few minutes and stayed on a few more, but that's when my cardiologist announced, 'You need heart surgery.' Don't worry about the test, and try to walk toward the top of the treadmill as they raise the incline - it's a little easier that way. You may not need surgery now, so cross that bridge when you come to it. But, you'll want to have it done before your heart shows signs that it's overworked. It's really not as bad as you think. You'll be fine.

Melinda Donahue  Susan and Klara - you two are definitely the angels that I was praying for.  Great advise and made me feel so much better.  I will have more info on Friday.  Thanks so much - maybe a decent night sleep tonight for me - thanks so much - with love.

Susan Lynn  Melinda - I'm from the 'Class of 2017', but I can feel that anxiety like it was yesterday as I read your posts. Many of the folks on this site will tell you that waiting is the worst part. When the day comes that you do need surgery, the hardest part will be behind you! Take it one day at a time. We'll be cheering for you on that treadmill tomorrow!!

Klara Čičić  It is so overwhelming....all of it... Having Barlow's can be so frustrating next to those guys with "only simple prolapse" I can relate to your feelings so strongly. Barlow's is more complex to repair and requires even more experienced surgeon, but at least they've got a bunch of tissue to play with when cutting and suturing :))) (this redundant tissue and long chords actually is one reason why in people with Barlow's even later re-repair is often possible)... You can do this, Melinda! We will be here for you every step of the way, as other Adam's angels have been for us.

Susan Lynn  Klara - You make an interesting point about Barlow's. I asked my surgeon if he would be removing excess tissue and he said no. I believe some surgeons do - I'm not sure how much it matters, either way, but that might be a question for Melinda's prospective surgeon consultations.

Melinda Donahue  Susan and Klara thanks for being so responsive.  I am beyond scared - almost the poster child for a screaming internally GIF.  Right now, I go back in February for an echo - my stress test, according to the cardiologist was excellent - no back flow and not exactly sure what that means.  He said I could wait and look at in 6 months.  Before stress echo, was leaning more towards the surgery.  I am a little  confused to say the least, nonetheless, scared.