Grace 's Journal

Adam, I really enjoyed reading Judy Mullers story "How a Boob Job Saved My Life", in your newsletter. It made me laugh and cry as I remembered my own surgery, though it was not as big of a roller coaster as Judy's, I could definitely relate to parts. Great writer! Good information to file away for later😊❤️

At our local hospital they recently incorporated an amniotic membrane, with natural antimicrobial properties to support a heart patient for first time. Sounds like an exciting breakthrough that could provide new ways to treat heart patients

https://youtube.com/shorts/we5rggYPLmk?si=xSFSkX3mOeI4L45L

Immediately after surgery I imagine everyone is on BP meds for a while during recovery.

I'm wondering how many people on this site who have had valve replacement, say more than a year ago, that took BP meds before surgery, have you since stopped BP meds or do you continue to take BP meds a year or more after your surgery?

I completed a follow-up echo today one year after my Ross procedure at Mt Sinai in New York. My valves are looking great!
Enjoyed seeing some of my New York team heroes again -Dr. El-Hamamsy, Dr. Williams, Roberto and Leemor ❤️
Celebrated with my family with some unbelievably tasty gelato!😋

Thanks for the awesome swag Adam!! I love the half zip Ladies Sportek with the kangaroo pocket.❤️

I am six months post Ross and repair of an ascending aortic aneurysm. It's hard to believe this much time has already passed!
I have been feeling good and increasing my speed and exercise. I recently had a follow up CT and have been disappointed to learn I have sternal non union. I was wondering if anyone else has experienced this?

10 weeks -
I have made progress! I think the steroids😝 are finally out of my system!😀 
It has taken some time after stopping them, but my sleep schedule is nearly back to normal. I have been having good days consistently for about a week. I still have a small to moderate pleural effusion on my left lung, but I have come to recognize what my bathroom scale and body tell me, as to how often to take a diuretic, to keep it in check and still feel good. Hopefully with more time it will resolve itself.
I went to my hair dresser for the first time since before surgery, and I was able to lean my head back into the sink to have my hair washed for several minutes before I needed a break. Then I sat upright while she finished washing my hair and I was ok to lay back down for the rinse. Felt so good to finally be able to get a trim and color touch up.
I am back to work half days this week, and then I am going straight from work to cardiac rehab 3 days a week. I was ready for a nap🥱 on Monday and today too, afterwards, but it feels great to get a step closer to my previous routine.
Rehab is going well, yesterday was already#10. My insurance will cover 18-24 sessions. I plan to request all 24 sessions because I definitely have a bit more work to get back to where I was physically before surgery.
I feel like I have turned a corner this week and I am feeling hopeful and ready to focus on improving my stamina and strength 😊🤞🏼❤️❤️

8 weeks post surgery-

Me at 3rd rehab today 😊 I found out Monday Nov 6 my pleural effusion on my left lung has returned, but is not as large this time, so I am taking a diuretic for a week and following up with another X-ray.
I also just finished taking 2 weeks of 40mg of Prednisone and then a taper off dosing for an additional 9 days for the first pleural effusion. For me the steroid side effects were worse than the actual pleural effusion and subsequent draining. Any caffeine makes me jittery and being on Prednisone at that dose, for that long, felt like I was using those double caffeinated energy shots that are supposed to keep you awake, for 3 weeks🫨
So happy to be off those!! Trying to get my sleep schedule back to normal and hopefully start feeling more normal 🤞.
Happy to be able to continue with rehab.

I am 5 weeks post surgery. It's been 3 days since I was released from the local hospital having been treated for pneumonia and fluid on my lungs. I am taking a high dose of Prednisone and Lasix to hopefully keep inflammation down and keep the fluid from building up again between my lungs and chest cavity.
I was also told I have a little separation at the top of my sternum from doing too much with my arms, which is probably why I have been hearing clicking in my collar bone. I am trying to be more cognise of using both arms together when doing any lifting or pulling open doors etc.
I started walking again outside the house on Tuesday about a 1/2 mile in one go. The Prednisone is raising my BP, so we are working on lowering it with some temporary additional Losartan along with the Metoprolol.
Wednesday the sun came out and I walked a mile comfortably in one go☺️👍. The sun felt amazing on my back and shoulders which are feeling better, as is my throat.
I have started wearing my compression socks again, as after my walk I could feel the stiffness in my knees from the fluid retention the Prednisone causes. I just started the lasix yesterday so that should definitely help, too. My GP also gave me a prescription for potassium while I take the Lasix since it depletes your bodies potassium. 
As I walked along the creek I came across a Blue Heron perched in hunt of creek chubs. He didn't even give up his post as I walked close by and took his picture. I hope we see many more days like yesterday before the cold settles in.🌞🌞🌞

This photo is a progression of my incision to date. The incision you see is, in total, about 6 inches. After the initial cut opening the sternum the top 2 inches of sternum was cut "under the skin" to reduce the size of the incision.
The first photo was on the 5th day, just after discharge from my surgery. The second photo is at 4 weeks just after being re-admitted for pneumonia and pleural effusion that needed draining. The last photo is today, close to 5 weeks from surgery.
The incision was seamed together with surgical glue and you can see where it has been peeling back little by little. They recommend leaving it there to come off on it's own. I have been carefully trimming it when pieces flake up. I am really happy with the way it is starting to look ❤️. I wasn't sure what to expect when I originally saw it when they took off the bandage 🥺

Well I have hit my bump in the road at 4 weeks post surgery. After speaking with my cardiologist yesterday morning and discussing symptoms, blood work results and x-ray results he wanted me to go to ER to get checked out more thoroughly than he could set up on a test by test basis. I was admitted last night with suspected pneumonia and given IV antibiotics, another chest x-ray and a CT. Probably have my echo this morning after seeing cardiology. 
Hoping not to be here very long because the weather here is beautiful and I want to be outside🌞

I am 4 weeks post surgery today. Wow, time flies by!
The first three weeks post op went much better than I ever expected or imagined. By week three, I had worked up to about 8-10,000 steps a day, spread out over the entire day in small increments and felt pretty well, other than muscle and ligament aches and pains in my shoulders and back I am still working through. My voice/throat has not recovered, yet. I have been eating lots of protein from tuna, salmon, cottage cheese, protein drinks etc., as I was told, to make sure I kept that up to aid in recovery. Those have all been easy on my throat.
My incision is still healing, the surgical glue is still intact and starting to peel up. I am waiting until it comes off to post an update picture, but it is looking better.
Last week I had a low grade fever/chills all day Tuesday and felt pretty crummy. The rest of the week I was running a low grade fever between 100 and 100.9 every evening. My step count went to about 1/2 or 1/3 of what I was comfortablely doing the week before. I may have picked up a virus, but not sure yet. I saw my GP on Friday got tested for Covid, RSV and Flu. All negative, thank goodness.
Monday I saw my cardiologist and had an EKG and an X-ray. I have some small to moderate pleural effusions on my lungs and some parenchymal opacity. I was given an antibiotic to start yesterday, and I have an echo scheduled for tomorrow, to make sure things are still moving in the right direction. I did feel a bit better this morning after the initial night of antibiotics.
I have also scheduled to start cardiac rehab 3x a week at the end of the month. Fortunately, I called and scheduled this immediately upon arriving home, as the earliest orientation was 6-7 weeks post op and which was pretty close to when I was hoping to be able to start. 👍❤️
Hoping to get good news later in the week.

Prayers for all of the heart warriors and their families preparing and recovering from heart surgery. Each recovery is our own. Go at the pace that YOUR body and YOUR physicians tell you.

Love to you all

I am happy to be back at home now, resting and walking. I took a two hour nap yesterday after the airport experience and flight which went very well. Thank you David Sabritt for the reminder to request wheelchair assistance. It was super helpful going through a large airport like La Guardia. It also allowed myself, as well as my son and husband traveling with me, to bypass the long security line, as I was wheeled to the front of the line.
I have to say the incentive to walk has changed. From our hotel in NY it was 0.2 miles to admire a pastry case(occasionally more than admiring), 0.2 miles to grab a juice or smoothie, 0.3 miles to a NY style pizzeria 😆. Our last night in NYC enjoying a smoothie at an outdoor cafe.

I think sleep was what I needed most after day five. Since I have been getting regular sleep (with the help of a sleeping aid) I have felt so much better. I still have some aches and pains in my shoulders and back, and still feel pressure on my sternum, but none of it is that bad. I have been walking a lot as that is very easy to do in NYC. There is everything within a block or two, groceries, a park, bakeries, bagels, and restaurants galore. They definitely make use of every space here.

I met with my wonderful surgeon today, had an x-ray and have been cleared to fly home tomorrow. Woohoo!
I just couldn't come to NYC for the first time and not see Lady Liberty. My husband found some premier tickets on the Circle Line cruises and for an extra $25 you get to bypass the line and get a cushy seat in a special area that was really great. Totally worth it.❤️🗽

Days 4 and 5- the morning of day four I felt pretty darn well, I thought, since just having had OHS and only getting maybe 3.5 hours of uninterrupted sleep. I was pretty independent, got myself up, brushed my teeth, sat in my chair for a bit, ate a bit of oatmeal. My throat has been very sore and it has been difficult to talk, so I don't feel like swallowing much either. My wonderful husband has been bringing me protein smoothies(thx for the tip Deena)
I walked 5055 steps in the hospital hall and atrium on day 4. Now I know what all you heart warriors are talking about in not overdoing! By the afternoon I am thinking I am going to take a nap, rest, but found out I was being moved to another room (shared), my original was private, which I was very fortunate to have, as not many at Mt Sinai are. So, my planned nap turned into packing and moving. I was so spent by 5pm I could barely do anything. I was moved uneventfully but I can now laugh a bit about it. The nurse came and gave me lasix(diuretic) because I had gained 16lbs in fluids post surgery. After my nurse gave me the diuretic the AC maintenance guys came and said they needed to get into our bathroom to work on the AC , so I had to keep asking 3 guys to clear out while I went to the bathroom and leaving my full "hat" for the nurse to make note of. Happily they did correct the AC issue after about an hour to my great relief That evening I slept maybe 1 1/2 hours total and was completely spent all day. Didn't want to do anything, thinking, what was I thinking having this surgery, I felt horrible. My BP was going up too high. My nurse Derrick was so kind, he came and talked to me a bit and shared some personal stories to try and get my mind in a better place. All the nurses were so kind but today I really needed that. When the attending physician came by I asked if I could be released to the hotel so I could sleep better, he agreed. This pic is in our hotel bathroom after the nurse at the hospital removed my dressings and helped me take my first shower. It is a brutal mark, a testament to what the human body and a heart warrior can endure and overcome. I know it will look better over time. I was blessed with the most wonderful surgical team. Dr El-Hamamsy is a wonderful person, surgeon and blessed gift from God.

I took a sleeping pill at the hotel after my last med and slept a blissful 7-8hrs
I have had my first shower at the hotel now, and you are right Richard, even that is exhausting. I am ready to plod on in this recovery after a much needed sleep. Bless you all for sending your wishes and thoughts to me. I plan to speak to them individually at some point but for now my husband is doing most all my communication for me, except this. Love to you all

Day 3 post surgery. I made it to step down yesterday. I walked half the corridor in ICU the day after surgery. Surgeons and doctors said everything went great and I am feeling very blessed, and sometimes emotional. So, now it is day three and I am definitely feeling the soreness in my shoulder blades and back. The nurse was giving me Dilaudid in my IV which worked great on the pain but made me itch all over. So I switched to Tylenol extra strength but then my kidney or liver tests were off so they said they might try Advil. Even without using narcotics the discomfort is doable, but I do really want some Advil. I have one big drain tube which I feel fortunate about because I know I have read of others with 2-3. It wasn't really bothering me until today. Hopefully it will come out tomorrow. I walked 5 Laps around the hospital floor, so far today, or 1052 steps. I felt a bit out of breath and like a small but heavy child was sitting on my chest. My blood pressure stayed where the doctors want it during my walk, around 110 for the higher number. They have been giving me Metprolol 25mg to keep it there. I thought the hardest part about walking is dragging all the wires they have you hooked up with. I did get my catheter out this morning which was the best thing ever. Now I notice the chest tube discomfort more. 🙃Hoping to lose the chest drainage tube, pacemaker and backup pacemaker soon🤞. 

Pre-op appointments completed this morning. Scheduled to arrive at hospital at 5:30am, be in surgical theatre, prepped by 7:15am and surgery should begin around 9am, if all goes as scheduled. Took a nice long walk in Central Park after pre-op enjoying the park and gardens 🌻 🪻

Went kayaking this weekend with my husband and sons. New unfamiliar, river trip was a lazy float except one hinky spot that narrowed, with a downed tree and some current. We had a little excitement as I caught a branch and flipped myself out of my kayak and lost my phone. I had it out in hopes of catching a pic of one of the bald eagles that nest along the river, but instead lost all my unbacked up pics. Other than that, it was relaxing and great fun with my fam. Just got phone replacement

I have been gathering some things to take with me for a hospital stay based on notes from others on this site, recommendations and things I thought I may want. I'd like to give a special shout out to Cathy Weed, with 4x experience, for her input about this and other thoughts, via phone call. It is all so much appreciated
So my list to date:
Chapstick, baby wipes, icy hot, warm socks, my own soap& shampoo(also dry shampoo), my own pj's that open in front, earplugs, eyemask, hair bands and ties, a post surgery bra(front close) and my camping Pstyle, in case I don't feel strong enough to sit, and then stand, to go. Plus the long charging cord for my phone
Any other suggestions?

Question for those who have traveled, after open heart surgery. Flying versus driving an extended period(6 hrs or more). I am wondering if anyone encountered any difficulties, or if you wish you had chosen the other option, after the fact. Also how long after surgery you did travel by air or vehicle? Thx.

I am wondering if you post on the notification that someone edited their story, do they get an email notification or should you post that question in their guest book, so they get a notice. If anyone has insight on this, I would appreciate it

I met with a second surgeon, Dr Gerdisch, to discuss options for my aortic valve and aneurysm on March 30 and he is a strong advocate of repair even with the calcification on my valve he will try to repair. If the calcium cannot be removed he can do a more "aggressive repair" and patch areas, if necessary, using part of my own aorta as live tissue as opposed to using pericardium tissue. I cannot find any info online about this and believe it is done more commonly in Europe. I was wondering if anyone has any knowledge of this on this site. 

Also, in reading the notes posted after my consult I read "The distal ascending aorta tapers nicely and I do not think circulatory arrest will be needed" I had assumed CA was the same as the bypass machine, but I guess it is not. Is it common to do valve replacement, or repair without CA?

Appointment scheduled with Dr Roselli for consultation plus he also wants me to get a better(contrast?) CT done at same time. The earliest available appointment was May 17, 2023. Wow! Didn't know it would be 2+ months out. Maybe because CC is rated #1, and very busy??Did everyone else find that this is the normal time frame for obtaining an appointment? 

Appointment scheduled with Dr Gerdisch in Indy March 30 for 2nd opinion and Cleveland Clinic and Dr Roselli have my records now for review for a 3rd opinion.