J Alexander's Journal

Happy Spring warriors. The daylight is coming. Just passing along that even at 15 months - fifteen months - I do see appreciable evolution of my morning heart rates (lower) and appreciable declines in BP medicine needs...
Heart surgery changes and disrupts all aspects of our equilibrium, and it remains a moving target for some time. In the end, we are our own best cardiologist to monitor closely and adapt these things to find the right zone.

And just like that, 1 year has passed! Hi friends and fellow warriors. Today marks my 1 year surgiversary for mitral valve repair at Cleveland Clinic. And what a journey it has been !

In the spirit of brevity and positivity/neutrality, here are some updates unique to my case.

1.) Recovery and progress continue. I would say I am somewhere around 90% of self in most respects. For me, this a new normal and I am okay with that. I do think this is an important point. Not all of us get to 100% and that is okay. It is okay for post surgery to look different.

2.) My personal cardiac rehab continues, and I work diligently on fitness and interval jogging to this day. With a trainer, I self educated on frameworks which make sense to me. My greatest progress has come from this and not from the immediate cardiac rehab. (The point: don't stop recovering!)

3.) Sternotomy aches and pains still exist from time to time. New sensations or reminders when I lift or use my upper body do happen. Again, I expect this.

4.) Shoulder issues/injury were exacerbated by a skin cancer surgery I had in summer which required me to be in a twisted upper body position for some time. Sadly, this was an unexpected part of my journey. I need physical therapy for this.

And that is a wrap. Happy Thanksgiving warriors. This site has been a constant positive force for me this past year. So, cheers! 

Hello fellow Warriors - I just passed my 6 month valveiversary for mitral valve repair (I've wanted to write this word for a long time!) I'll skip the medical updates other than to say I'm continuing to recover bit by bit - happy to say I am around 80% self. Echo looks really good.

Importantly, I am reminded of two bigger principles... 1.) Cardiac surgery is a big equalizer- so it puts all of us into the same bundle regardless of age, geography, income or any other demographic label.

And 2.) I am also reminded of the tale of the tortoise and the hare. Some people have a fast recovery and beat their chest to that, but really, what matters is individualized recovery. What that means and how that looks, and keeping the mind and body in check through the recovery process. The tortoise also finishes the race.

This is heavy stuff - and sometimes post surgery care is about the softer elements, and sometimes the harder elements ~~

New Cardiologist - totally deadpan. No smiles, nothing. I guess he missed "empathy week" in med school. He only made one mistake (ejection fraction) in discussing my case, so progress, indeed !

Hi Valerie - Echoing Laurent. This is your moment. Your Cleveland Clinic moment. Soon, you will be an alum, too.
Savor the preop. synchronicity. The prep and hold was cool, so don't be nervous. Tell them just what you want for relaxation meds. Also remember those ice chips are your best friend in the first hours of extubation.
I'll be thinking of you.

Warrior shout out.

A question. Do any other post sternotomy patients have shoulder cracks and pops from regular movements? I'm about 4-5 months out and have quite a lot of left side shoulder cracking/popping with movements. Not the sternum. It is isolatable to the shoulder.

Presumably it is due to the 'Jesus Christ' surgical positioning for 4-5+ hours, but curious if others do have shoulder issues post surgery? Any and all experiences welcomed.

Spring - the season of hope is here! Again, worth reminding how helpful HVS interactions are both before, during, and after surgery. We're like a hidden society of people who appreciate and share common experiences the rest of the populations does not quite grasp.

Hello Warriors of Spring. (Sounds like a screenplay...eh?)
I'm still tweaking, altering, experimenting, and exploring my beta blocker situation post mitral surgery. Not twerking though.

For those of you post valve surgery (mitral/aorta), were you given any specific thresholds for resting heart rate and BP where it was OK to drop the metoprolol?

For example, if your resting heart rate was at 80, or 70, was this a threshold?

Similarly, can you remind me when you dropped or pulled back on it? They say it needs to be tapered but also wondering about that....

Any and all personal situations or past advice welcomed.

Today, I'm being a cardio bad boy: skipping rehab and going to the park with a friend, instead. Its almost a scene from the movie Grease. I promise not to sing.

Certainly not complaining by any means, but rather sharing that this part of journey - for me - has been surprisingly difficult.

Out three months now, post sternotomy, I indeed feel like a hamster on a wheel - chasing an invisible food pellet. It is hard to calibrate how one should feel with how one does feel. My local doctors and medical teams are far from enlightened.

The beat does goes on, though !! Thanks fellow warriors.

I am finding that my sleep quality is diminished on days of cardiac rehab. Perhaps it is the extra stimulation of exercise - I can deal with that after all of this hell, but.... Why am I paying someone to watch my heart rate on second class treadmills when I can do this on my own?

I also do not like the "class structure" of my program - so wondering if I would do better with a trainer, 1:1? There is zero camaraderie among the others (passive aggressive crowd).

It seems like this experience should feel positive and it does NOT- at all. It feels like some kind of twisted high school assignment - I am kind of done with suffering !!! (Plus, I am paying almost $200 a session for this with a high deductible in insurance.). 

Thank you all for the frameworks and feedback on the target HRs with beta blocker. Honestly, you provided substantially more insight perspective and explanation than my "new hometown cardiologist" - so feel free too put a MD after all of your names.



I will use this information actively now.

Hey Warriors - I'm curious how those of you who have done post valve surgery rehab and been on Beta Blockers have received advice on when you hit the "sweet spot" of aerobic activity while working out.

With being doped up on metoprolol, the traditional HR pulse escalation curve does not really hold. I just stay pretty flat in the 120 range after moving steadily through the 100s.

Any tips or insight from your cardiac rehab folks? I'm not super confident of my rehab center yet, so asking around.

Thanks...

My declaration to myself as I approach cardiac rehab and start using the local gym.

"Thou shalt not creak nor crack nor pop nor click my chest at any time. Or squeak."

9 weeks now, first evening sleeping in a bed post sternotomy. Fairly awkward. Side sleeping was not nice.... I feel like I am learning to ride a bicycle once again!!

Yep - time to do some heavy duty pillow shopping !

Fun with drugs! Well, not those kind of drugs...

In a quest to expand knowledge of managing rapid, racing heart rates post surgery, I wanted to share;

Now 7 weeks out (sternotomy) my new cardiologist was a bit concerned about my rising resting heart rate, now in the 95 bpm to 100 bmp range. He upped me to 3 times daily Metoprolol and is switching me to the Succinate extended release version for some time to see if it evens things out.

I will certainly share how this goes. My BP is nice and low mostly, but the resting rate is not. I know there has been a lot of recent discussion among fellow recent surgery warriors of this topic, so wanted to share.

Happy New Year fellow friends and warriors. Just a shout out to say I hope the new year brings lots of good things to you all...  

Grateful for the encouragement and support this past year.

I'm mostly having a linear recovery (now 5+ weeks post MVr). Holding my breath until my follow up Echo this Friday. Then, I can exhale !

Good evening HVS Warrior friends.

I flew to west coast for Christmas from Cleveland on Saturday and had a bit of nasal congestion and a sporadic cough once I landed. (Not covid and no fever)

For sternotomy patients, did you find that coughing caused sharper pains on the right side of incision. So not the heart side, but right side. For me, kind of a focused pain right of the sternum incision. Seems muscular.

Just curious what others experienced when coughing - I did not cough one bit the first two weeks post surgery, so this is new to me.

Thanks again - always value learning from others what they experienced.

Hi friends and fellow warriors - Just an update from my side - 13 days post MV repair at Cleveland Clinic.

The first week home has been an exercise in patience. With sternotomy, the fatigue is real and ever present. I find the fatigue just a background to the entire day. Resting helps.

Pain management has gone well. I'm off oxy and the only real pain I have is in my shoulder and back. The incision is not a problem. Today was the first day (day 13 since surgery) where it improved.

Lots of random visual disturbances which I cannot predict.

Still some breathing resistance on deep breaths, but I'm continuing to do this and every day.

Lots of little walks. I can do around 30 minutes now and a few smaller walks. They feel good. The first trip to the grocery store was hard - and now I find it much easier - so progress!

Strange right side lower diaphragm pain which I can't explain yet. Right above hip. Watching this.

Thanks again to all. I find the past shared experiences helpful to frame my expectations going forward !

Lastly, the recliner chair is essential. I did have a "funny" malfunction one night on it where the cord pulled out - and I had to be extricated, but otherwise it has been an essential. At least I know I can hospital bed roll out if needed !!!!!

Happy Sunday.

I had my post discharge follow up today.
I will be working in my deep breathing and hoping the inflammation around my heart subsides. But overall, very good.

We had a fascinating conversation about how our bodies get confused and angry post surgery - so mundane things like basic temperature regulation or vision quality can be impacted in subtle ways.

I used a wheelchair today at the CC as too large to navigate on foot just yet.

Awaited Update -

Hello friends and happy Sunday. I am now 6 days out of my mitral valve repair at Cleveland Clinic, and happy to update and color my week. There are many things to share so I'll keep it fairly brief and try and make it interesting.
Kind of a top 10 list, Letterman style:

1.) Strategy Shift - had a resection planned but my P2/P3 was so big and messy, that Dr. Gillinov went with a chordal only repair (multi-chords). I was so glad that his range and skill was on demand for this critical decision.

2) Small amount of residual MR still which should be ok, and the Cardiac Fellow who opened/closed it, calling it a "perfect" repair. I hesitate to make such declarations yet, but hey, why not?

3.) Breathing Tube drama - my extubation was quite the drama. I really struggled with the transition part - and was restrained and foaming at the mouth as they say. I remember hearing voices and sensing the suffering but not computing that was happening to me.

4.) Had my big speed bump Morning One when they first got me up, I passed out in the chair and they discovered EKG abnormalities. I faintly recall being in an ER scene, moved by sheet back to the bed with a dozen folks around me and IVs and emergency Echos. (To be clear => they thought I was having a heart attack!)

5.) Pericarditis remains, which they says is transitory, and related to immune response. I'm not worrying yet!!

6.) Remainder of ICU was heavenly. I had a private room and exceptional care.

7.) Step down was a little rough at first. Mostly due to equipment issues (the bed freaked out, but we got it sorted) and one nursing team was lackluster, but that was the exception.

8.) Step down got better, and learned to advocate for myself specific needs and "proactively plan" meds with nurses. They were very open to that.

9.) PT and mobility folks were super nice - I did not obsess with walking but pushed every day more

10.) The home recliner is a Godsend - spent the first night at home - up every 60-90 minutes, but the recliner made it possible. 

Yep - resting heart rate is super high which I know is routine from this site. I am at 85 to 88 bpm sitting, and on metoporol.

Now I am binging Ozark on Netflix.

Thanks to all - more to come.

A heartfelt thank you to my fellow warriors wishing me well for tomorrow. It is an emotional day - filled with anticipation, excitement and just a little dread.

I'm busy organizing and packing up. Had a lovely dinner from Old Italy last night.

Ironic and somehow beautiful that a winter storm is blowing into Cleveland right as midnight strikes. A signal of sorts that is time for change, time for some hard work, and time for a reward!

Thanks

Well, I can say that the Cath procedure was a snap! Super easy and very very low discomfort. Know that.

The wait for bleeding was comfortable and totally manageable. Long day, but just fine.

The CC fellow rocked the procedure, and the lead surgeon (maestro) had Fleetwood Mac on the whole time, which made me feel good.

Day One of Pre-op at Cleveland Clinic.

A very well organized and impressive day. I moved though 4 activities and had a long conversation with an assigned Cardiologist. (Echo, Blood, EKG and Xray). Tomorrow, the Cath.

All top notch.

A question. Have any Mitral Valve patients had an "Left Atrial Appendage" add on procedure. I understand it can reduce stroke risk in Afib patients (which I am not). It is a decision I need to discuss with surgeon on Wednesday. It was not really discussed as of yet, but the cardiologist did mention it.

I'm doing reading on it, but less familiar with this extra fix. Did others have this? Thoughts..?.

 I'm not an Afib patient currently, so less certain if we need this "drive by".

Thanks all ~~

Hi friends. Happy weekend. Your input valued.  As I am exploring institutions for my Mitral Valve repair, I wanted to circle in briefly on Johns Hopkins. It is a newly minted Mitral Valve Center of Excellence (Dr. Gammie) along with the ~24 or others in the states. It does not seem to get the press on this site, nor the patient mentions of other hospitals. Do any of you have any experiences there - insights good or otherwise about their program and patient experience? Many thanks.