Deena's Journal

FOR THOSE WITH MITRA VALVE DISEASE
https://www.modernhealthcare.com/safety-quality/aha-mitral-foundation-urge-mitral-valve-repair-over-replacement-recognition-program

CARDIAC REHAB EPISODE- CAUSE IDENTIFIED

About one month ago I nearly passed out during a cardiac rehab session and was drained of energy for a couple of days. Finally figured out why. It was a polypharmacy issue-- meaning that I had two meds that should have not been used together and were slowing my heart down too much. Normally, I suppose, I would have just be tired from such, but I drank a strong cup of coffee the morning of rehab (with breakfast) and went to push my heart pretty hard at cardio rehab.

Metoprolol and Exercise

I was doing great at cardio rehab until two days ago. On Thursday, everything seemed normal (HR, BP), but then when I started exercising my entire body weakened; I felt faint and I could not continue. I had to rest on a beach for 30 minutes and then go home to sleep.

While exercising, the EKG/ECG showed in that short five minute period one PAC and one PVC, which has not happened in rehab before. My BP was not too high or low nor my HR.

The cardiac nurse could not really explain why it happened. I still feel weak two days later and when I walked on the treadmill today my HR was 10 points higher than usual at my intro level (a flat 3.2).

I emailed my cardiologist about titrating off the beta blocker and explained what happened in cardiac rehab and he simply replied to now “take the metoprolol at 12.5mg once per day, instead of twice”. He asked that I email my serial BP measures to the nurse.

Hummm. Any insight about why I may have had this set-back would be appreciated. I still feel comparatively weak.
Thanks Veteran Warriors!❤️

Wine and lifting weights. Hi everyone, I am about 10 weeks post op. I have been invited to a Memorial Day neighborhood get together and was wondering when it is okay to drink wine. I am pretty sensitive to alcohol, can't drink much and don't want to have any set-backs with my heart muscle healing. Also, I just started cardiac rehab after a four week wait. For those with a sternum incisions, when were you able to lift heavier objects (> 5-8 pounds) and use weights, nautilus machines, etc. I won't get to this part of rehab until another month or so and am wanting to move forward. (aka-- patience is waning:).

Four weeks post surgery (almost). Happy place!! Can sleep (somewhat) on my side, can sneeze without wincing pain, appetite strong, and most of all, my heart is repaired. Can't wait for cardiac rehab!!! Bring in on!!(waitlisted, due to staff shortages

A Bit of Humor (And some truth)

My husband told me today that we should really measure my improvement in recovery by “PR”.

“PR”? I replied.

“Yes, pillow reduction. You are down one pillow on the bed!!”😂

Dentist - post OHS

Did anyone get guidance from their surgeon or cardiologist as to when it is safe to go to the dentist after open heart surgery? I just cracked my cap tonight. I really dont want endocarditis. Have an email into my cardiologist, as well.

Normalizing.
I am 16-days out from surgery and counting every day. My taste buds seem to have normalized and my appetite is back. Ice cream is my new food group. That said, I have stayed away from anything caffeinated. Usually coffee is the only thing that gets me up in the morning. Now getting rid of my back ache does. Was wondering for those of you that had OHS, if and when you started back on caffeine. Mt Sinai in NYC mostly told me to stay off it, while several of the clinicians there said I could have "a small amount". I think coffee is too much, but was wondering about tea. I read that Adam went back at about "several weeks". Thanks for sharing your experience!

Looks like a fort that kids make, but it works for my back pain:). Couldnt take another night of sleeping only on my back. The side pillows let me turn to my side about 30 degrees. So little stress on incision and less on back!

Recovery side. Hi all. Short note to say the surgery went well. Heart is fixed!!! Repaired tricuspid valve as well aa mitral. Very fatigued. every day gets better. For now, best advice is that for any pain, naseau etc yooubfeel, tell the icu nurse asap. Dont wait for it to go past a 5 on a 1 to 10 scale. Thanks for your tremendous support!!

Boy, did I learn a lot today. Fascinating.
Mt Sinai is impressive. Smart, compassionate staff. Finally met Dr. Adams in-person, beyond than the one zoom call. Even MORE impressive in-person, not just as a surgeon, but in being genuine and wanting to move the field forward.

Had the chest x-ray. Everyone’s sternum is differently angled, so important to know before opening-up. I had a MRSA test too; came back positive, so have ointment to take via nostrils. (Not the blood borne MRSA). I can actually put some hair product in my hair, so I will decrease my odds of looking totally haggard. The closing of the chest takes a lot of time, at least 45 minutes l, super important as you can understand. My heart will be stopped for about 90 minutes, not likely to negatively impact memory. Pain is not really from incision, more from the operating on the heart. Once pain gets to level 5 on a ten scale, ask for more. (Got that one!). Can eat anything the night before, did not know about carbo loading, but I think this may happen in the future, given current research.
How will I feel when I wake up? like a truck hit me”. “. Will tell you what that exactly equates too!!!

Packing tonight, hitting the road tomorrow for NYC from VA for surgery at Mt Sinai. For those of you that had your sternum "tattooed", can you tell me how hard it will be to put on a pair of sweats and Tee shirt? As in two days after surgery and then a week? Thank you much.

Pre-surgical meal
Did anyone get some good advice about how to minimize post surgical nausea? Not sure if it is due to the anesthesia and/or the pain medicine. I read to carbo load the night before surgery, but another website said to add more protein. Water? Will also ask my surgeon during pre-op visit this Wed. Thanks!

Well, as my cardiologist rang-in the New Year to me, he said "2021 is my year". He was referring to the fact that we have been literally watching my mitral valve prolapse and calcification for 13 years and now my left atrium was mildly dilated as well left ventricle. Every year that has passed since I was diagnosed I was so happy, because I was wanting the technology to advance to the point where I could have robotic or some other type of minimally invasive surgery. But, alas, I have not just three leaks in my mitral valve, but severe calcification. I didn't realize that the severe calcification would eliminate me for minimally invasive surgery. Actually, I am relieved that the science and human talent has evolved to allow me to get a repair! So... this is why I choose David Adams at Mt. Sinai in NYC as my surgeon. He is incredibly talented, specializes in mitral valve repair and told me he could definitely perform a "life time repair". Holy cow. Great.

So, there we have it. I will be on Adam's "bulletin board" for having surgery this March 18th. I feel good about getting it over and being able to push my body harder eventually such as in spinning class, but also anxious. I think of it as a "pyramid of anxiousness". At the top, are the "Biggies", as I call them: Will I survive and will I have any co-morbidities such as a stroke? Then we continue down the slope and get to breathing tube, pain, infection, etc. I try to focus on being happy with getting over the "biggies", because that's what it is really about. The rest is more short term stuff. But can't kid myself, it is all daunting.

I have read lots of your blogs and appreciate all the tips. I didn't even know that I needed to bring a tooth brush. :) . Have never been hospitalized. The suggestion to bring PJ bottoms or sweat pants will be really handy, so thank you all!!!

Adam, you were excellent on the Martinez show.— articulate, informative, passionate. Thxs for representing us and the issues so well. #next.round.morning.TV!!!!

Latest:

Held a video conferencing visit with Dr. Adams at Mount Sinai (NYC) about my mitral valve. --Have severe regurgitation and severe calcification. He recommended surgery within the next nine months. Dr. Adams was outstanding! I will be speaking with the Cleveland Clinic via video in two weeks. I know both of these hospitals and respective surgeons are top notch. Does anyone know of pros and cons in helping me decide where to go?

Also, this may be a stupid question, but is there a best time (season) to get the surgery? Summer is already booked, so it is either this Fall, Winter or early Spring. (Winter seems not ideal, given it can get really cold in Virginia and walks outside would be more limited.) This Fall is an option, just that COVID will probably still be a major issue. Spring seems far off, and thinking about this surgery for so long is not great for my mental health:) I know I am fortunate that I have the option of determining when.

Thank you for your advice!

Can anyone provide me info as to how much lead time is needed with the Cleveland Clinic to get on their patient list, If the surgery will happen within 6 to 9 months.

I contacted CC and received forms to complete re: a second opinion, but not an understanding of the process and timing.
I am debating whether to get my mitral valve surgery there or at Johns Hopkins in. Baltimore, MD or fairfax INOVA hospital in Northern VA, where I live.

Thanks much!!