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How to prepare for OHS

  • 1.  How to prepare for OHS

    Posted 06-09-2020 00:51

    Hi all - first time poster. I found out in early March that I have a sinus venosus atrial septal defect and thus require open heart surgery to repair it. I was supposed to get married May 1 - basically got the diagnosis and treatment plan a week before I had to postpone the wedding because of covid. Fun times! Overall thankful for my relative health and continued employment (trying to keep perspective)

    In any case, it's looking like the surgery will be in another month or so. I'm trying to figure out how to prepare. The surgeon recommended taking a daily multivitamin with iron, no caffeine/alcohol, walking daily and generally living as normal. Which is great! I'm also getting my trust drawn up *just in case* (I have a 6 year old and 9 year old)

    But I also feel like I ought to be doing more. I haven't really found much detail on recovery. I'm almost 38 so the doc seems to think I'll be on the faster recovery side of things. But - for those that have been through this - are there things I should be thinking about for after the surgery? A comfy pair of shoes for walking. Books to read. ... beyond that? I'll have my mom and partner available to help as needed but - what else can I do now to get ready?

    Thanks for your advice!

    Jill H

  • 2.  RE: How to prepare for OHS

    Posted 06-10-2020 09:37
    Hello Jill, excellent questions ...I had surgery last August 2019 and had no idea what to expect or prepare for.  So I do appreciate your questions

    I was in no pain whatsoever from my OHS, but was weak
    and had to stay in a respite home from August until the
    end of October.  I had no appetite, and became dehydrated
    on a few occasions because they put an additive into the water to thicken it which also made it horrid for drinking.  They mechanically chopped all my food up because I had been on a ventilator and had a hard time swallowing after coming off of that.

    I begged my husband to bring me my Protein drinks and drank in secret slowly so I would not choke.  When my surgeon found out I was not eating but drinking the protein shakes, he started bringing me in a shake a day during his rounds.  Just be aware that you may not go back to a normal diet for some time after your surgery

    I did not do really well with being in the ICU.  
    My lung collapsed and my Surgeon had to open me up again
    and redo my Heart Surgery.  

    There is no planning for many things that can happen during a surgery, but for me the hardest part was being so weak and
    feeling totally unable to take care of my even smallest needs

    Good luck Jill, please let us know how you are doing 

  • 3.  RE: How to prepare for OHS

    Posted 06-11-2020 18:27
    Its like preparing for any other surgery except your recovery may take longer. Organizing and preparing your kids for temporary separation is the main thing. Some times visiting you post op can be problematic: face time etc are good tools. They can help you by drawing get well cards that you can put on your rehab/ hospital walls.
    You are right to organize your will and power of attorney Etc
    Make lists of your questions and then write down the answers, someone should accompany you to appointments etc. In rehab( respite etc) boredom is an issue, but they want you to rest. Be sure post op to ask for what you need ( for example they were taking my blood sugar 4 times a day for two weeks, i am not diabetic, and the numbers were always good and my fingers were black and blue. I asked “why check my blood so often, is it necessary ??? “. They cut back to once a day. )
    Good luck: it sounds like you have A good support team.
    Last tip: let people help you!!!!

    Marilyn B. Rosenhouse
    Mobile: (214)850-0655

  • 4.  RE: How to prepare for OHS

    Posted 03-24-2021 11:51
    I hope you're fine now, Mary Hedtke. Yeah, protein shake was not a bad move for your appetite. Try protein bar or candy par as well.

    Laisa Beck
    Los Angeles CA

  • 5.  RE: How to prepare for OHS

    Posted 03-24-2021 11:51
    I hope you're fine now, Mary Hedtke. Yeah, protein shake was not a bad move for your appetite. Try protein bar or candy par as well.

    Laisa Beck
    Los Angeles CA

  • 6.  RE: How to prepare for OHS

    Posted 03-25-2021 04:21
    Hi Jill,

    The most important thing for you to know post open heart surgery is that your recovery will take time and you will need to be patient.  In agree with your doctor that the fact that you are only 38 should speed your recovery, but it still will take time.

    I'm sure that your medical and nursing team will give you all the details about post-op care but, very generally, the first 12 or so weeks post-surgery will require that you follow what are know as "sternal restrictions" to allow your sternum to heal properly.  Very briefly, these will entail not lifting more than 5 or 10 pounds, not stretching to reach things in overhead shelves, care in how you lie down and get out of bed and so on.  During that time, you can and should also be attending a cardiac rehab program for an hour or so 3x a week where physical therapists will run you through an exercise program that will be safe for you and will greatly aid and enhance your recovery. Walking is also paramount.

    After 12 weeks, you should be getting more closer to normal, formal sternal restrictions lifted, going back to work and/or your usual activities,!including the gym, but you likely will continue to feel some level of exhaustion at times, possibly some shortness of breath or other physical complaints, all of which generally are normal but which you should talk to your cardiologist about if you have any concerns.  Listen to your body. Full healing is a process and can take a full year.  Nevertheless, as a 67!year old quintuple bypass survivor at the time, I was back to work and back to the gym lifting weights 3 months after my surgery and running 5 months after surgery.  I wasn't nearly as physically strong as I was presursurgery, but I had recovered mist of my strength by 12 months.  As someone 30 years younger than me at the time, I would expect that you will heal even more quickly than I did.

    Best of luck to you, and please keep us posted, before and after.


    Ira Reid
    Hoboken NJ

  • 7.  RE: How to prepare for OHS

    Posted 06-10-2020 10:15
    If you have a tub shower, you may want a wall bar to grip when you stand so you don't fall. At first you may need a plastic chair to sit on. You may want a clip-on seat on the side of the tub to sit on before you try stepping in. You may also want a grip bar beside the toilet.

    For another tip, have your husband/partner spin dry your towel before you get out, so you will have something warm to wrap yourself in.

    You will be knocked out at first; but you can make n amazing, even life-transforming recovery.

    Stay positive

    Bob Levin

  • 8.  RE: How to prepare for OHS

    Posted 06-11-2020 12:43
    I now have three grab bars on the tub-shower, retrofitted with a hand-held shower, and a shower stool. I also have a vertical grab bar by the toilet, for my weakening quads.  All this after six months on a pic line and seven years on an LVAD.

    Oliver Wilgress
    MH chapter 382

  • 9.  RE: How to prepare for OHS

    Posted 06-10-2020 10:45

    Sorry for your issues and happy that the issues were found and that you have what many do not: time to prepare.
    My experience is that successful rehabilitation requires both a physical and emotional/mental effort. For preparation, the physical aspects your doctor recommended are good ones. As a lawyer, I agree with your getting your documents in order. I believe in the strength of our subconscious, so part of my preparations are to create positive thoughts about my "will-to-live" so even while unconscious my body will fight. I do not know if this works, but I also have no evidence that it doesn't, and its free and makes me feel more in control. One technique I use is to start planning for my future under the idea that if I make it, I already have the start of a plan. I also visualize what the physicians will be doing, which helps me mentally prepare my body and has an incredible side effect of increasing my thanks for my creator. This may sound a bit strange, but focusing on my body increases my awareness of situations of all living things. I found rehabilitation an opportunity to grow.

    My experience is that rehab can be described as a pyramid where each step builds on the previous one(s). I discuss them in my book "One Heart-Two Lives: Managing Your Rehabilitation Program WELL."

    Brent Zepke

    Brent Zepke
    Santa Barbara CA

  • 10.  RE: How to prepare for OHS

    Posted 06-10-2020 11:42
    Hi Jill.  I just had my OHS a few weeks ago.  I decided to write a few posts about it on my blog, divided into the before, during, and after phases of the surgery, in order to help other folks going through the same thing.  I just posted the before section yesterday, so here is the link if you're interested:

    Good luck!

    Anne Birdsong
    Occupational Therapist

  • 11.  RE: How to prepare for OHS

    Posted 06-10-2020 12:55
    Hello Jillian,
    First and foremost, KEEP YOU FAITH NEAR YOU. Whatever you believe, embrace it. KEEP YOUR SENSE OF HUMOR. Laughing may hurt for a while but believe me it makes all the difference when planning ahead. You will have moments of depression and that is normal. Expect it to happen and be prepared for it. Remember it is only temporary.
    There were several things I wish I knew before my surgery. Some basics first.
    1. Practice getting out of bed without using your arms. 
    I know it sounds silly, but when your sternum has been cracked open, using your arms is difficult for the first week or so. Little things like reaching into a cabinet to get a glass down are not as easy.
    2. Have extra space available on your nightstand. 
    Keeping tissue, water, pain pills, book etc.. within reach can save you a lot of stress and sometimes discomfort.
    3. Make sure your path to the toilet is kept clear.
    We take for granted we can get up in the middle of the night to use the toilet, but when you are weak after surgery one slipper becomes a tripping hazard.
    4. Have a supply of popsicles or oranges or flavored water or whatever you prefer in the house as your taste buds and your appetite will be off for a while. So you want to make sure you stay hydrated. Plane water my not taste good.
    5. Have an extra pillow for sitting up in bed.
    Having a backrest or pillow will make all the difference when you want to be up, but not out of bed.☺
    6. Have a designated chair or recliner for yourself.
    There were days I was so week I just fell asleep in the living room with the TV on. That is OK for you as well so have a comfortable space set aside for when you really want to be up but are tired and just want to sit and relax.

    These were some of the things that I had to adjust to after my surgery. Had I planned them in advance it would have been easier on me. I hope this helps a little and on behalf of all of us in the Zipper Club, Welcome in advance and good healing to you.
    All advice from us as well as others, just take what you need and want and ignore the things that will not fit with your life.

    Richard Short
    Chapter 395

  • 12.  RE: How to prepare for OHS

    Posted 06-10-2020 12:52

    Dear Jill,
    I too was a mom of young children when I had my surgery at age 42. That was 16 years ago now.
    My biggest desire after surgery was to get back to caring for my family the best and fastest way.
    Here's some tips that helped me. First of all, be a good patient. Let the staff guide your recovery. They may often know what you are capable of before you know. Cardiac rehabilitation was my most important ticket to my recovery. It addresses both your physical and emotional recovery. Maybe you could tour your rehab facility before your surgery to get a feel for it. Make a way to go to rehab!
    Second, allow friends and family to help. That's not as obvious as it sounds. If possible, let people help you with meals and child care and chores so you can focus on your recovery at least a month. If you get spread too thin trying to keep everything going, you will drag out your recovery.
    Give yourself smaller short term goals instead of bigger long term goals, especially at first. Don't plan a half marathon this fall. Maybe try to walk 100 more steps each day.(you get the picture).
    Resting and activity are key to recovery. After a rest take a walk. After a walk take a rest. Yup, get yourself a great pair of walking shoes.
    Last of all, talk. When you talk you'll find out all those new strange thoughts you're having...are normal.
    Best wishes to you.

    Diane Caputo
    Olympia WA

  • 13.  RE: How to prepare for OHS

    Posted 06-10-2020 13:43
    Hi Jill
    I would like to tell you to make sure you have a comfortable place to sleep. Your back and chest are going to be pretty sore and you're going to be coming off the heavy drugs from the hospital. You'll be sleeping upright for a while too. I started in my recliner because it puts you in a more comfortable position. Also make sure you use your pillow to hug when getting up and not use your arms. Using your arms too much is going to make you more tired and in more pain than you want to be. Good luck. You're going to do great. God's got this!

    [Carrie] [Kashani]
    [White Bear Lake [MN]

  • 14.  RE: How to prepare for OHS

    Posted 06-14-2020 10:52
    All - thank you to each and every one of you for your kind words and very helpful responses - it made my week! Thank you thank you!!

    Jillian Henninger

  • 15.  RE: How to prepare for OHS

    Posted 06-14-2020 14:53
    Hi Jill,
    First of all, talking to others who have been through it was extremely helpful for me so you are already on the right track!
    I was 38 when I had my OHS last summer and had a smooth procedure and recovery. I had a very minimal speed bump with some fluid around my heart after surgery but it was easily fixed with some meds. I was told the same thing about a quicker than normal recovery and was out of the hospital in 4 days. Although it may have been quicker than normal, it wasn't fast enough for me! I wasn't prepared for how slow I really need to take it so it was hard for me mentally. I think it hurt me a little having expectations for a "fast" recovery and things definitely were not happening as quickly as I wanted. Just be prepared to follow the Drs orders for activity and rest, and don't over-do it! I think that was the only really hard part for me was that nobody told me that the recovery would be a challenge so I went in thinking it would be a walk in the park. Had I known, it would've been much easier to deal with.

    Also, I got a new pair of running shoes(for slowly walking) and plenty of shows to binge watch. Netflix, Hulu, etc will be wise investments. Someone else mentioned to practice getting up and down without using your arms/upper body which is a good idea. You don't realize how much you use them until you can't. I think getting a plan from your doctors for post surgery will help also. I had a discharge plan from Cleveland Clinic that gave me guidelines for how much I needed to walk each day. I would also highly recommend completing a cardiac rehab program if available and if your Dr recommends. I would look into reserving a space as soon as you can. I waited too long and then they had a waitlist so I got started a little late. it was extremely helpful in getting me feeling back to normal and helped me feel confident exercising again. Also my wife got a sleeping wedge from bed bath and beyond that saved me! Its like a big memory foam thingy that you lay on that keeps you slightly elevated. Also extra sheets, I would wake up drenched in sweat for a month or two every night and we would have to change the sheets.

    Its a challenging experience but you will get through it. It sounds like you have a great support system to help along the way. And just for perspective, I'm nearly 10 months post op and I am back to life as usual with sleep, exercise, work, etc. Feel free to reach out anytime!
    Keep us posted!

    Cole Morrison
    Saint Simons Island, GA

  • 16.  RE: How to prepare for OHS

    Posted 06-20-2020 15:22
    Hi Jill. I know you had said you were interested in my list of things to pack for the hospital.  Just finished the post today, so here it is.  I know your surgery date is fast approaching, best of luck to you!

    Anne Birdsong
    Occupational Therapist