Deena's Journal

Annual ECHO

Situation:

My cardiologist, who is excellent, just said that having an annual echo is no longer needed. This is three years post- MV and tricuspid valve repair surgery. His reasoning is that this is the “current medical protocol”, and we are all need to not waste dollars on unnecessary exams and tests.

Question: Wondering if anyone’s cardiologist said the direct opposite (that is, do the annual echo) and the rationale.

Dental guidance re: endocarditis, thought this might be helpful:

Had my dental cleaning appt today. Spoke to dentist about endocarditis (pre and post surgery), since there has been so much discussion on HVS lately. He said cardiologists and cardiac surgeons ought to be telling all patients about the importance of clean, healthy gums and why. I do not remember such guidance after prolapse diagnosis nor post surgery. For example, a sign of unhealthy gums are those that bleed, when flossing.
He was not saying unhealthy gums were the main reason for endocarditis before or after surgery, but rather such puts you at-risk.

Richard and Rose,
Saw your posts!!  So kind. And yes, for sure, I have not had another OHS. Thanks for wondering!! Believe me, if I was going to get another zipper closure I would be blabbing all-over-HVS!!

(tried to send you direct postings, but at-this-time HVS did not permit.)

MAX Heart Rate:

Hi everyone,

Did anyone get some sound advice from your cardiologist or surgeon as to how high to push the HR during exercise? Also- any insight as to how a high rate during exercise can cause more harm than good to a repaired valve?

I have gotten mix advice.  My  cardiologist said “not to push too hard”; one surgeon on HVS.com said don't go over 140 beats per minute (no age adjustment) and in my cardiac rehab they applied the usual algorithm using my age, regardless of surgery.

Thanks for any insight!

Well, just had my two-year post surgery echo. Have mild stenosis (already) occurring on my mitral valve repair. Was concerned about this happening, because of the severe calcification. If anyone has any experience with this, besides the eventual valve replacement, would love to hear about it. - mostly any way slow the stenosis….

Hi everyone,
so…. I have been at the beach (Maui) and I met an anesthesiologist while swimming. I told him how much I dreaded getting nauseated after open OHS and he said that it can be prevented. Whatta, really?! Said next time ask for TIVA which is intravenous, rather than with gases, because it is the gases that makes one sick.

Marie (Meyers) was thinking based on your professional surgical experience you might know about this?!

Miriam St Clair- hope she is well. She had some intensive surgery at the Cleveland Clinic about 4 weeks ago. Sent her a note over a week ago, but no reply. (Yet).

ANOTHER HOSPITAL PACKING ITEM

If you are taking any prescriptions, bring the bottle(s) to the hospital or the actually written script, otherwise it will not be given to you. I took my statins, etc. in a pill box to the hospital, but was told not to take them, because I did not have a script. Not sure how it was handled for others, when relevant.

POST SURGERY BRA (support for those with their sternum cut)

Hi- somewhere one of our heart warriors was concerned about chest support post-surgery. This is the bra I was given to wear while in Mt Sinai hospital (NYC) and post- discharge. It's purpose is to not have any pulling on your incision. What I liked was that it was front-closure and the velcro closure was so simple to use. Plus your chest is swollen after surgery, so you can adjust the velcro as the swelling decreases over about two weeks. Mt. Sinai gave them to me for free, so ask your surgeon's office if they supply something similar.

https://mastheadpink.com/bras/

Baby Aspirin

I just read from Ginny and others that had annular rings (annuloplasty) that their surgeons instructed them to take a daily baby aspirin for life. -- to avoid the slight chance of a clot. I don't recall ever being told this by my hospital team. I have two rings (mitral and tricuspid). I took baby aspirin for two months post surgery and then was okayed to stop by my cardiologist. Would the warriors that had rings "installed" chime-in please as to whether they were told to do such or not? (I also read Adam's related post). Thanks much.

FOR THOSE OF YOU IN THE PROCESS OF SELECTING A MITRAL VALVE SURGEON: https://www.modernhealthcare.com/safety-quality/aha-mitral-foundation-urge-mitral-valve-repair-over-replacement-recognition-program

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:).

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!

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!!