It was a shock when we found out that my 29 year old husband was going to have to undergo a very rare open heart surgery for PAPVR. John, a healthy and active athlete for his entire life, was the face of good health. He was always running, working out, eating healthy – never a care in the world about anything. That was until a few months ago when he started to notice that he was having chest pain, dizziness and getting more and more fatigued during his workouts. After a round of cardiac tests, and a cardiac MRI, he was told that he had two congenital heart defects that had to be repaired immediately. He was diagnosed with ASD (atrial septical defect) and PAPVR (partial anomalous pulmonary venous return.) Without detection and surgery he would eventually suffer heart failure, so we were faced with the nerve wracking task of his surgery and how to prepare.

His surgery was done on February 6, 2017 at Columbia University in New York City. I can’t tell you how hard it was for me to keep it together, but anytime I got nervous and scared I reminded myself I need to be strong and put on a brave face for the both of us. The best thing to keep my mind busy, while juggling a job/dog/home/etc, was to be extra prepared for the weeks ahead. If you or someone you love is having open heart surgery I figured it might be helpful to share with you the items that we have been buying and packing to take to the hospital as well as what we are doing to prep our home for when we return from the hospital for recovery. These are all thing I think are great to have with you while you are in the hospital in order to make the stay more comfortable for your loved one as well as for you if you plan to stay with them around the clock. I also wanted to make sure to share all of the things I will have ready in the house before we head to the hospital so that once we get home we are not scrambling to get anything. I am sure there will be things I forget, but at least this is a good list to start.

What to pack for the hospital for surgery:

For the patient:

• a warm, comfy, cozy tie waist robe – I got this one for my husband and it is so soft and likely he will be in this a lot since it will keep him warm, is open in the front for ease of access to his chest
• a  pair of loose fitting pajama pants – I ordered a few for my husband to pack for the hospital stay. These will be easy to take off and on but are also a bit warmer than the pants they may give in the hospital. These are easy to slide off and pull back up
• some socks that are not too tight. you want socks to keep the feet warm but not so tight that they will bother the circulation in the feet and legs which is important during recovery.
• a pair of slippers that are easy to slip into and not require to pull over the heel. You want something to have grip when walking the floor and to and from the rest room but also comfy
• a large sized  zip up hoodie. These are great to have when it’s time to go home since putting anything over the head may be difficult and it is easy to unzip if needed. Plus it won’t both the incision site and is warm and cozy
• a pair of sweat pants to wear on the ride home that are big and not hard to get off and on
• a big, soft pillow to take with us on the ride home from the hospital. This will help to ease any discomfort driving in the car in case it is a bumpy ride
• a padded seat belt cover pad. Since you need to ensure the patient wears a seatbelt on the ride home a padded cover will make it much more comfortable to wear
• throat lozenges – since there will likely be some tubes in the throat during and after the surgery these will help to coat the throat and ease any discomfort. After anesthesia the throat can be sore so these will help a lot in the days after surgery
• a blanket or pillow from home that you love. It’s nice to have items from home that make you feel at home while in the hospital so a comfy blanket or pillow is a great item to have with you
• their favorite toiletries. We will likely be packing his favorite deodorant, face wash wipes to make it easy to clean his face instead of standing over the sink, body lotion to give some foot massages and keep his skin moisturized, chapstick in case his lips get dry
• a book or kindle to kill time if he wants to read articles or stay up to date on the news

For visitor/spouse:

• comfortable changes of clothes for up to a week depending on how long your loved one will be in the hospital. For me I will be packing a few pairs of leggings and sweat pants, tank tops and long sleeve t-shirts, hoodies/sweat shirts in case it gets cold or hot I can remove layers, socks, sneakers or Uggs which as comfortable
• my toiletries to freshen up in the hospital room – make up wipes, chapsticks, deodorant, etc, tooth brush and put them all in a travel makeup pouch
• my vitamins – I never leave home without them so I will pack a week’s worth of my supplements in a 7 day vitamin pill case
• Books and magazines to kill time. Odds are he will be sleeping and resting a lot so I’m going to make sure I have books to keep me busy
• a blanket and pillow for when I am finally allowed to stay the night when he gets into his own or shared room
• contact lenses and glasses in case I need to change them or put on my glasses instead. Pack a contact lens case and cleanser to take them out and give your eyes a rest each night.
• Snacks – since he will likely have no appetite I will want to pack some of our favorite snacks just so we always have something to snack on. I will be packing nuts (almonds and cashews), protein bars (our favorite arePower Crunch bars currently)
• I will likely be drinking lots of coffee I always pack a ton of packets of stevia since most coffee shops don’t have natural sweeteners

For the both of us (tips and items):

• cell phone chargers – you will be using the phone a ton to call family and friends to give updates so you will want to have at least two chargers handy
• a list of emails or phone numbers of work people to reach out to in order to keep them updated on the progress
• a list of emails and cell phone numbers to send out messages to keep everyone updated
• leave all jewelry at home – not only for my husband but also for me so that nothing gets lost or stolen (it happens)
• get a hotel room nearby. Some hospitals do not let guests sleep over night so it’s important if you don’t want to have to travel each day back and forth to have a room nearby that you can retreat to for sleep, a shower and then return. For our hospital stay at Columbia there is a hotel nearby that I booked for four nights just to have a place to allow me or family to get a break/rest and then visit throughout the day

What you should buy and have ready at home for when you return:

• Stock the fridge with lots of liquids. It’s important to make sure to have water, vitamin water and protein drinks in case the patient does not have an appetite. We love the Trumino waters since they are not a milk type protein drink but more fruit flavored and refreshing
• Chicken broth to make home made soup and nothing makes you feel better than chicken broth when you don’t feel well
• have a place for the patient to sleep and be comfortable. It’s best to have a comfy recliner or a chaise part of your couch so that they can lay down but also get up fairly easily. It is difficult to get out of a flat bed after heart surgery, so keep in mind where they will sleep and rest and that it’s easy to get up and down.
• Have pillows and blankets at home that are fresh and clean
• ensure that if you have a pet, that you have someone to watch them for the first week after surgery. You don’t want to run the risk of them jumping on top of your patient.
• I ordered a table tray that can roll under the bed or couch. This makes it easy to have everything they need easily accessible when they are laying down or alone for an hour or two

Overall the better prepared you can be the less things you need to worry about and you can focus on just being there for your family member and have them just concentrate on resting. You’ll be having many sleepless nights together so it’s so important to be prepared and then just rest and be there for them. I hope this list is helpful in case you or someone you know will be undergoing open heart surgery.

Post Surgery Learnings:

Now that John is 5 months post surgery (as of June 2017) there are some things that I wanted to update about my list of things to buy and bring to the hospital.

1. John lived in his hospital gown and really never wanted to change out of it.
2. He loved the socks the hospital gave him with the grips on the bottom to prevent slipping around and sliding on the floor during his walks so we took a few extra home with him. I think it was more of a security thing so that he knew his feet were gripping the floor. The last thing you want is any sharp movement after surgery if you slip, heaven forbid.
3. He loved his robe. He lived in it for the first two weeks and it was so soft and cozy. It was also easy for him to take on and off since his range of motion was limited after surgery to put anything overhead.
4. He couldn’t eat much the first 2 days but after that he did. The nuts, protein bars, mashed potatoes and ice cream were his favorite
5. He did not shower in the hospital and showered when he came home. He had to shower with his back facing the shower head so that the pressure wouldn’t hit his incision area.
6. He did not put anything on his incision after his surgery and still hasn’t. It is healing nicely and did scab a bit but overall his scar does not look bad. It is about 8-9 inches long.
7. He was tired a lot and slept a lot which is normal. He still feels a little sore now if he sneezes or coughs, but that is very slight. He was sore for about 2 months after surgery but is back to lifting and bench pressing and doing push ups.
8. My hotel room was never used. I spent every night in the hospital with John thanks to the nice nurses who let me stay, even in the ICU. I put my bags in the hotel and took a shower there once but other than that it was a waste of money.
9. It’s so important to sleep when you can and eat when you can. I was so exhausted by the time John was discharged and I didn’t get a full night’s sleep for at least two weeks. Whenever he would nap it was my cue to nap as well.
10. You are going to need help sometimes so make sure to ask. If I needed to run to the grocery store in the first week or two I couldn’t leave him alone, so I would ask a friend or family member to come be with him so I could go out to get supplies. Everyone was more than happy to pitch in.

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