Heather's Journal

John Cook  1. Probably not, ask your surgeon. The risk is bacterial infection and if there are any complications, they want to keep your body free of obstructions. You can probably put it back in after discharge. Also, there is the risk of swelling from edema.

2. Probably not, ask your surgeon.  The concern would be bacterial risk during and immediately after surgery. Some will even ask you to take your polish off. One day, I painted my toes after surgery to cheer myself up.

3. Cardiac rehab starts around 8-10 weeks after surgery. It’s not required but it is recommended.  It is mostly walking on a treadmill with a 3-lead EKG on.  I used rehab to push myself harder on my exercise than I was at home because I was already in a hospital if I had a problem.  At 12- weeks you should be able to start working with bands and light weights.  Flexibility might take a while. I had pain in my ribs for about 4 months as everything settled back into place and got used to moving and stretching, but I also have psoriatic arthritis.  Heating pads helped a lot with back and rib pain.

4.a. you should be able to wash your hair on your own before discharge.

4.b. You’ll want to keep lotion away from your incision.  You won’t be able to reach your backside well for a long time.

4.c. You’ll want to wear loose clothing for a while. Baggy Ts & button-ups are your friends. Google “surgical bras.”

5. I could work at a desk at 6 weeks.  I could work in the office at 8 weeks.  I was golfing at 3 months.

I felt 100% normal for everything but exercise at 5 months.  But I’m much older and had an aortic aneurysm repair as part of my surgery.  I think it has hindered my exercise recovery.

i ran a 5k distance at 6 months, which was my main recovery goal.

6. there will likely be a very small closet in your room once they move you out of ICU. I don’t think I even wore underwear under my hospital gown for a week (I was in for 9 days).  But I’m not shy about my ass hanging out.

A lot of people are discharged around day 3 or 4, but every recovery is different. I was 9 days.  Some people are in for a month.

It all depends on if you come out the other side with complications and how bad they are.  I had chronic edema for 3 months. I battled it before surgery and it was much worse after.

Stay positive.  Your surgery is different than mine and you’re younger and don’t have the other chronic issues I do.  Hopefully, that translates into a speedier recovery.  Good luck.

John Cook  The thing that you will find frustrating is that the recovery protocols are not written for people who are young or active, or otherwise healthy.  They aren’t the typical patients.  

I’m in my 50s. I have some chronic issues but was still doing 3.5 mile runs less than a week before my surgery.

There will likely be times where you feel like you can do more than the typical protocol. You need to listen to both what your doctor is telling you and what your body is telling you.  Message your doctor if you have questions about your protocol.  I did it a lot because I was arguing with his PA about my meds and what I felt like I could do.

This is what is great about rehab: the physiologist watches what your heart does in real time under stress.  They can tell you if you are doing too much or (more likely) tell you that you can do more.  I was running intervals at 3 months to the envy of a couple rehab patients.  One guy was so angry about it he would change equipment if I got on a machine next to him or leave early.

Rose Madura  I met with a cardiac nurse about one week prior to the surgery for an orientation where I was explained everything to expect and had the opportunity to ask questions.  I'm sure you'll receive some sort of orientation either in person or by phone with precise instructions.

J Alexander Lassally  Heather - 1.No. 2 No. 3. Optional to get a framework then you can take over.  4.  Doubtful. For sterotomy, give yourself 4-6 weeks and expect to ramp up slow. 5. Definitely unlikely, you will be in a hospital gown and bring some slippers. Remember, it hard to dress as can't overextend sternum.  Loose button up shirts are the name of the game and sweats. 

Number one rule - give yourself plenty of grace and succumb to the ritual of surgery. You will be amazed at your inner strength... The toughest acting job ever and the result will be great!  

Marie Myers  Definitely no piercings . Metal conducts electricity, so piercings can lead to burns, since electric cautery is used in surgery to seal bleeding blood vessels.
 At least 2 gel nails need to be removed (one on each hand) since oxygenation is measured by pulse oximetry using a device over the finger tip. You don’t want incorrect oxygen values due to gel nails.  
You will probably not be worried about skin care for a few days, as you will be post MAJOR surgery, with tubes and drains everywhere.. the exhaustion after surgery was the most surprising thing to me. I didnt wash my hair till a day  or two before discharge..
 I didnt get dressed until my discharge day, 6 days later.  You will not need extra clothing during the time you are hospitalized. 
I started cardiac rehab 3 weeks after surgery, and it was 3 days per week. I felt well enough to go back to work part time (in the operating room) at 8 weeks. But i needed a nap when i got home for a couple more weeks. And everyone's recovery will look different, depending on the extent of the surgery and any complications that may happen. 
I was pretty wiped out for the first 2 weeks at home, but after that, my energy was returning and i started cooking again. 
Hope that answers some of your questions.

John Cook  Also, one thing to not underestimate is the emotional recovery from OHS.

Sleep disturbance, anxiety, crying, and depression are 100% normal.

Marie Myers  Good point, John. I was an emotional rollercoaster when I got home for a couple weeks.  It really brings your own mortality to the forefront!

Dan Fouratt  A lot of great advice.  I would add bring a good pair of walking shoes, functional not fashion.  Slip in. You will be able to walk on the floor and the more walking you do the sooner you will get out. I would bring something comfortable to change into.  I got out of the hospital gown and went in to comfortable sweets and an front button shirt. They were down right ugly. Surgery Thursday, walked 5 plus miles around the hospital recovery ares (87 loops) on Saturday and out on Sunday.  You are in great shape and should be able to walk soon after surgery.  This is a functional time and bring things that are functional. the more walking the sooner you get home.

John Cook  That’s true.  Adjustable shoes you don’t have to lace is a bonus.  I bought some cheap knockoff Birk slides.

Because of my edema issue, I was adjusting straps twice a week.

Grace Mason   My team allowed me to keep a plastic stud in an ear piercing I was afraid would close. They put tape over the plastic stud. You will just have to ask if that would be permitted on belly button.
You probably won't be able to shower until discharge day. This will usually occur around 4 days post surgery if everything goes as expected, but can certainly vary. A nurse will help you. 
I brought dry shampoo to use in my hair before I was able to shower. My nurses brought warmed wet disposable towels to use as a sponge bath before discharge.

Until you have most all "tethers" removed you will probably be discouraged from using other clothes unless they have the same ease of access to your iv, chest tube, temporary pacemaker, EKG wires etc. These will come off as you progress and then you can transition to your own clothing.
You will want to choose loose clothes because likely you will experience some swelling from fluid weight gain, which is normal. You will shed this fairly quickly but probably not completely by discharge day. Button or zip front(if zip placement won't rub against incision) shirts or dresses will work well. 
Once you are up and moving on your own and can show staff you are steady on your feet you will be able to do most anything on your own as far as dressing, going to bathroom, and self-care. Generally they want you to be up and walking a few steps within 24 hrs of surgery. 
It's a bit of a roller coaster as to getting back to normal. Some days you may feel really well and then the next day spent and not as well. Definitely you will tire quickly the first several weeks.

Robert Miller  I drafted a lengthy response but decided not to post it because you are concerned about belly piercing, gel-x nails, doing makeup, wearing cute outfits, etc. If you confirm you really have open hear surgery (I mostly can just talk about OHS, AFib, Maze, etc) I will do my best to respond. 

Heather Leigh  ahaha yes, I am really having open heart. still feels surreal and like I'm talking about another person. I'm a 23 year old model living in a major city so yes, these are my concerns.

Grace Mason   I find the concerns you raise outside the ordinary but certainly legitimate questions. At 23, I doubt my concerns would be the typical 50 plus age concerns.
What was it my mother used to say. If you have nothing kind to say....then say nothing. Yes.

Robert Miller  My initial instinct was that
you are trolling but apparently you are serious. So here are my answers to some of your concerns. 


 * Reset your expectations and focus on the actual
procedure.

• * Create a list of questions written down on a piece of paper and ask those questions to your surgeon.


• * Make sure you talk to at least 2 surgeons if not
  3 or more.


• * Make sure you check out the learning center on
  this website. It gives you a lot of information.


• * Do what they tell you. Most
  importantly don’t eat or drink anything 8-12 hours before your surgery. I
  did gurgle, took a Ricola and took a very small sip of water. Nothing
  else.


• * You won’t be able to take a shower and wash your
  hair 2-3 days. Even taking showers is difficult. Going poop probably won’t
  be an issue because the medicine will make you constipated. For going pee,
  you will have a pipe inserted that automatically drains the liquid. I am
  not sure how it works for females. For me, a male, it went right up my member.
  It was annoying though it made things more convenient.


• * You will look just the same 1 day after surgery. Just add the scar and wires.


• * Cardiac rehab is where they get you back up on
  your feet when you get home. I never did this so I am not sure what
  exactly they do. But the goal is to get you back to where you were before (and
  better). Considering your age, I don’t think you need cardiac rehab. BUT(!!!)
  you need to respect the healing of your chest bones which will take some 3
  months. Do NOT go beyond what your surgeon says, even if you think you can
  do a lot more, especially at your age. Don’t do it. It’s 3 months out of your
  life. It’s nothing once you look back.


• * You probably won’t be able to bring a suitcase or
  have a clothing rack in your room. Just a backpack with a phone, phone
  charger, cloths for when you leave the hospital, toothbrush, etc. Most
  likely you will have to wear a gown that is solid on the font with some hidden
  holes and a pocket where wires go through for temporary pacemakers, etc.
  On those gowns, the back is open but you/nurses close them with strings. When
  walking, you might also have to wear socks with sticky nibbles so you don’t
  slip.


• * Regarding the belly button piercing, for surgery I had to remove
  my necklace that my mother-in-law gave me and that I never remove unless
  absolutely necessary (for x-rays I pull up the necklace by holding it in my mouth). They
  do insert tubes in the neck so I guess it makes sense that I had to remove
  my neckless for my surgeries. Maybe you can keep your belly button
  piercing during surgery. But if not, I suspect the hole won’t close for
  several weeks so you can put it back after surgery.


• * I have no idea what gel-x nails are. Probably ok
  but ask the staff of your surgeon. Ask the physician assistant and not the
  surgeon. The surgeon might not take you serious anymore if you ask a question
  like that. I am not saying this in a negative way but from a surgeon’s
  point of view, there are a lot more important things to be concerned about
  than cloths, nails, piercing, etc.


• * For the procedure, since you have open heart
  surgery, you probably will have to take a shower, wipe yourself down with special
  wipes and get shaved. For men your chest gets shaved, possibly arm as they insert a tube into your arm, and pubic
  area. Then you get put on a bed and rolled into the surgery room.
  * Since you are into modelling, this might be a
  good opportunity to show something unique. But you really need to reset
  your expectations. The hospital most likely won’t allow you to do some
  fashion thing. Instead, I would concentrate images on what is really
  happening including wires, monitors, walking down the corridor with a pole
  with bags and wires. 

susan harris  Heather, i bet the nurses will help you do almost anything to make yourself feel more like yourself.  and they’ll tell you if something has a medical reason why you cant.  i am sure they understand how to speed the healing process by improving your mental health. Grace, thanks for the “nothing nice to say”reminder. i was going to leave this alone but just can’t. thanks to all for great, positive, encouraging posts here. with that said,  i can guarantee that those in their last 1/3 of life (many on this site) look at OHS very differently than those in the first 1/3. i live this everyday!  Let’s all strive to keep this community supportive and helpful. 

Vincent Kohne  I'm not sure what kind of surgery you're having. You do say open heart. It took me about 4 weeks before I felt good again. I started walking right when I got home from the Cleveland heart clinic. I was told I didn't need cardiac rehab that I was in too good of shape to begin with. I started working my legs with weights pretty quickly and now after 5 weeks walking is getting much easier.

John Cook  That’s a lot to go through at such a young age. Most resources are geared for middle-aged and elderly people because that’s who typically has these surgeries.

OHS is nothing like ACL surgery. The good news is the the statistics on OHS are better than 99% for most procedures.  You’ve got this.

Anxiety before and after surgery is normal. Random emotions and crying after surgery is normal.  

If you google, “what to expect from open heart surgery” you will find some great resources from Cleveland Clinic, WebMD, and NIH.  You can also find some videos of people documenting their experience with recovery.  This website has awesome resources and recorded interviews.

You can expect to be on short-term disability for 6 to 12 weeks.  I could work at a desk at 6 weeks.  But I couldn’t drive to my job until 8 weeks and I had lifting restrictions for a lot longer after that.

Hospital stays are usually at least 3 days.  I was in for 9 days.

You’ll be moving slow.  Lifting and reaching are the new main restrictions while your sternum heals. Your hospital will give you their recommendations but it’s usually a “not more than 10lbs” or a “move in the tube” by keeping your arms and hands close to your torso.

Post surgery, in the hospital, they will have you doing short walks in the halls, probably with a walker at first and eventually on your own.  I needed a cane to balance for a few weeks because I lost some strength in one thigh.

When you are discharged, they will give you a list of walking goals to do on your own to bridge you from discharge until you can start Cardiac Rehab.

Having pillows to prop you up or a recliner to sleep in is recommended. It helps take pressure off your chest when sleeping.

Your appetite will be decreased for a while after surgery.  It’s important to get enough calories and protein during this time. About 1/4th of your calories will be going into healing you for a while.  I could only eat 2 meals a day for a long time.  I supplemented with fruit smoothies with pea protein.

It was about 5 months that I felt “normal” for most activities most of the time.

those are some of the basics. It’s been almost a year since my surgery.  Others can chime in with more advice.

Fidel Martínez Ruiz  Amen to all said by John, only to emphasize the importance to come to the surgery in a good physical condition- I see you are very young, dancer and actress and you´ll not have any problem in achieving it, simply walking or making exercise moderately before surgery. It is important to have somebody close to you, your friend is fine, it doesn´t matter that she is very young, perhaps better. Courage, cheer up!!

Robert Miller  That is a hard thing to go through at such a young age. I hope you talked to at least a couple of surgeons. There is a lot of information on the learning center to prepare for the surgery and with preparing I mostly mean what comes after surgery. Couch, pillows, stiffness, lifting, driving, etc. If you have questions, ask. But you also should be informed about decisions like valve replacement vs mechanical valve (most probable in your case) if they can't fix it.

And while I wouldn't rush to OHS unless necessary, I also wouldn't delay it too much. 

Since you have Afib, get the left appendage removed. See if you are a candidate for the maze procedure. 

As for communication, personally, I wouldn't tell anyone except the closest friends and family. I usually keep it just matter-of-fact. But if you need to deal with this, share your feelings with your closest friend and parents if you are close to them. 

Having said that, OHS is a pretty safe procedure. And as I keep saying on this forum, you are nowhere safer than in the hospital with nurses and doctors seconds away. 

https://www.heart-valve-surgery.com/learning-center.php

Grace Mason   Wishing you well Heather. I second all the above suggestions. You are young and active so that is great going in. I think you will do well and may be tempted to do more than you should post surgery. You may need to slow yourself down and stick to the after surgery restrictions. 
I definitely also recommend a second or more opinion if at all possible.

susan harris  second all of that!  my son had OHS at 5 and just last year at 27. first night home, he slept in a recliner. then in bed with a foam wedge (check amazon). you’ll need someone to accompany you home from hospital and get your pain meds at pharmacy. would be helpful to have someone first night to give them to you in middle of night. i had massage therapist come to home twice after surgery. he said his back was really hurting and it helped. put dishes, cups, etc on counter so don’t have to reach up. stock fridge/freezer before surgery. my son started walking outside 1 week after and was at 4 miles per day in 2-3 weeks. back at work desk job 6 weeks. hope that helps. you got this!  

Heather Leigh  thanks everyone! I'm a theatre dancer/model so this kinda feels like my whole life is falling apart. no family coming up either. I feel very alone.

Grace Mason   Heather , I imagine it does feel like your life is falling apart when your career is so physical and appearance focused. Having roommates will be a plus in your recovery. I agree with Susan about needing someone to help you manage the meds the first week or so for sure. I recall almost double dosing a med I had already taken about a week out and was glad my husband was following that with me and stopped me from taking too much. After that incident I started writing everything I took down for several weeks so I could track it when my husband went back to work. Most everything else I could manage on my own.

You can always reach out here for support. We are a group that really gets what you are experiencing. 

Challenges like these can really get your creativity in high gear. You may find other ways to channel your talents while you recover. Just remember your value is more than a job and more than just your appearance ❤️
Not sure if you are concerned about the scar from surgery, but if so it can be nearly unnoticeable if properly cared for after several months.

Thomas Brusstar  A female friend of mine in NYC had a mitral repair via sternotomy shortly after I had my mitral repair (also via sternotomy) about 8 years ago.  My repaired valve still does not leak at all after 8 years, btw!

Perhaps relevant for you is this:  my friend was particularly concerned about her scar afterwards, SO she talked openly with her medical team beforehand.  The surgical team made a plan to be sure a plastic surgeon was nearby "just in case."  Apparently the insurance would cover a plastic surgery closure only if deemed necessary or urgent or something during closure, so they magically did what it took and her closure was done by a plastic surgeon.  So you should communicate with your team.

I can tell you I made no such arrangements, and my scar was very clean.  Now, 8 years later, it is a hairline scar on my chest, barely noticeable.  And yet I'm proud of it because I did so well!

You will get in-home nursing visits for the first few weeks you're home, and those are great.  They check your blood measures, they help with beginning exercise/rehab, and they are generally friendly faces at a time full of uncertainty.  I found it energizing to track my recovery, in terms of energy and movement, in the first few weeks at home.  The human body is amazing, and you're so young you'll recover fast.  You'll do great!

Jim Archer  I had an OHS in April of 2020, in the midst of the Covid outbreak. My thoracic surgeon was married to an plastic surgeon, who was the attending surgeon, and least busy at that time. Not only did she help with the aorta valve replacement, and the ascending aorta, but the she aided in chest closure and the scar is very clean. 

If you are worried  going through the ICU and post critical phase, this was early Covid, and the hospital had a nurse in the room at all times. My family was not able to visit during my hospital stay, so the staff was very attentive. Share your concerns. 

Robert Miller  @Heather if you feel alone and nobody is helping you, usually the hospital is working with support services and the hospital will tell you about those services before they release you. I am not sure how insurance is covering those services so you might want to check with them BEFORE your surgery. My wife was very supportive and it was a big help, but frankly, I could have handled it myself. You have to be carful about lifting, moving (since you dance), etc. If you have more specific questions, please ask. 

Trygve Harris  Hi. I had a very similar set of procedures at Mt. Sinai in October 2024. I'm much older than you. I was 59. Mitral replacement (after one in 2023 in another country) repair tricuspid, MAZE, and pacemaker. Honestly, you will come back, probably a lot quicker than I did, and I have no complaints. You are still going to be athletic, gorgeous, lively and active. But it's a hard procedure and will kick your ass for a while. I didn't have any family either. I have friends for sure but not the kind to help with the bathroom and stuff. The good news is that by the time I got home I didn't really need help getting up and stuff. They will not let you out until they think you can handle it. I was annoyed and wanting to go home and impatient after about 10 days. I recommend hiring a nurse for the first night or two. It's expensive but was really good. She helped me regain a lot independence over just two nights. It felt good to have someone there just in case.


I think it's better to let go of any expectations for your looks and mobility at first. Just know they will come back. I'm apparently unrecognizable, many people tell me, and look a decade younger. My hair is full and glossy, my skin looks great, I can move, exercise yields rewards like it didn't for several years, when I was sick, etc.


The scar is nothing. Eventually scars all fade. Try not to worry about things like this. You'll rock it and your life force will shine through, I promise. I was so sick, and also had several bouts of cancer with it. And I'm much older. And I feel so much better. You will too. That's why you're having the surgery.


You don't have to explain anything. Open heart speaks for itself. It's possible many people will rally. You can trust yourself, your body will help you. You will be fine, and feel better; and that will be reflected in your appearance. You will wash the hospital off after a couple of weeks, and you will be magnificent. You are gonna come out of it shining, no question.


I also travel a lot. I spent most of my time out of the country. You will get it all back, and better. Try not to sweat this small sh*t. You're not gonna be ruined. You're going to feel your strength and it will add to your overall being. And personally, I love my pacemaker. If your heart is really slow, it's going to help dramatically. The downside is people won't think to ask if you have a pacemaker at the airport and you need to remember so you don't go through the machine.


Ok, this is long, I know. If you are scheduled on June 4th, you have time to get your living space ready, and make sure you have fresh sheets, towels, etc, and stuff put away. Put things where you can reach them, etc. They will tell you practical things. Your only job is to heal. Everything else will fall into place. Good luck