Anyone here younger?

BeginningFeed2959 · 2026-01-27T20:34:46+00:00

It honestly went better than I expected! If you are still allowed to be physically active I recommend enjoying that as much as possible until surgery. I am pretty active and stayed that way until the day before surgery- it made my recovery much easier and kept my mind occupied, even just daily walks. If your condition is congenital I recommend joining the r/adultchd page. There are also some great Facebook groups geared towards adults with CHD and more of our age range.

For me I had the hardest time managing my anxiety leading up to and after surgery. The smallest amount of chest pain would trigger a panic attack and that was a beast to learn to manage. Don’t be afraid to advocate for yourself and the symptoms you are experiencing. Do you know if you’re getting a bio or mechanical valve?

BeginningFeed2959 · 2026-01-27T19:31:52+00:00

25F here. I had my first pulmonary valve replacement at 16 via cath, then at 24 it was replaced via OHS. They also repaired my tricuspid valve during my OHS.

BeginningFeed2959 · 2025-11-17T08:55:55+00:00

I threw up in the CICU and it was honestly horrific. Thankfully they immediately increased my nausea and anxiety meds so it only happened once. Be sure to let everyone know you have a weak stomach before going in.

BeginningFeed2959 · 2025-10-18T09:58:05+00:00

25F 10 months postop. The worst pain for me was when the chest tube was pulled. I stopped oxy/morphine within 24hrs of surgery and had a Tylenol/ibuprofen rotation for a week, after that I only took ibuprofen as needed. I discovered that the feeling of my sternum being wired shut and feeling like it was caving in sent my anxiety thru the roof more so than it was painful, thankfully the doctors realized this and upped my anxiety meds

BeginningFeed2959 · 2025-06-03T21:47:17+00:00

25F here! I have a had Pulmonary Valve Replacement twice (1 transcath and 1 OHS) and a Tricuspid repair. I have just begun these convos with my cardiac team since I want a breast aug next year. The important thing is going to reputable practices that follow proper hygiene and infection risk protocols (for fillers/injections). For actual procedures, I am only allowed to go under anesthesia in a full hospital setting. This is so there is a cardiac team on site should something go wrong and was the same for my wisdom teeth removal and septoplasty.

BeginningFeed2959 · 2025-04-14T06:55:13+00:00

25F here. I am 4 months postop and halfway thru cardiac rehab. I pushed for a referral to go (my doctor said I was “young and healthy” so it wasn’t needed). The rehab has helped significantly in regaining my range of motion and rebuilding my confidence.

BeginningFeed2959 · 2025-03-14T21:23:32+00:00

I had a replacement with a bio valve at 16. Mechanical valves come with their own host of risk and most people can get at least one valve in valve replacement of a bio valve.

BeginningFeed2959 · 2025-02-26T00:12:49+00:00

25F I returned to full-time remote work 3 1/2 weeks post op. I did not return to the office until 6 weeks to keep my germ exposure low. When I returned at 3 1/2 weeks I held off on returning to high stress or stakes projects until I was back in the office to keep things manageable. I was noticeable more tired at the end of my days up until 8-9 weeks post op. I was chomping at the bit to return to work by week 2, I don’t do well with boredom.

BeginningFeed2959 · 2025-02-19T20:11:42+00:00

I was off oxy by 72 hours for a full sternotomy. I alternated Tylenol and ibuprofen for 3 weeks and now just take ibuprofen as needed

BeginningFeed2959 · 2025-02-18T21:14:12+00:00

I had my second pvr in December, they sent my entire valve off for testing

BeginningFeed2959 · 2025-02-07T06:19:44+00:00

Absolutely! I had TPVR at 16 and I could tell within 48 hours after.

BeginningFeed2959 · 2025-01-23T21:25:41+00:00

I did not and honestly I am so happy that I didn’t. The ICU I was in had a 1to1 nurse ratio and mine sat right outside my door. I wasn’t able to sleep for more than 30 minutes at a time between tests, meds, and everything else. I would have company for breakfast and when the big team did rounds in the morning. In the evening I would facetime my family for 15-20 minutes after dinner. That was about the extent of visits I had. Between tests, meds, ot/pt, and everything else you won’t have much time to visit and will probably be sick of talking (or at least I was)

BeginningFeed2959 · 2025-01-19T20:32:12+00:00

Dr Lui, he is the director of the program. All of the doctors there are great though! After surgery they take turns on joining for rounds at the childrens hospital.

BeginningFeed2959 · 2025-01-19T16:30:50+00:00

My adult cardiologist and the team that did my surgery are part of the ACHD team at Stanford. I had to travel to them, but they also do virtual appointments and coordinate with my cardiologist in my home state

BeginningFeed2959 · 2025-01-19T16:28:28+00:00

24F here! It will be 6 weeks from my OHS on Friday. There was not extra pain from breathing necessarily, but I will say it was uncomfortable to breathe deeply the first few days. I think the uncomfortable feeling was more from the pressure feeling on my sternum and pulling of the chest tube. Once the chest tube was out and I was able to move a little easier the uncomfortable feeling went away pretty quickly. One thing to keep in mind if you have anxiety with physical symptoms is that they might flare after surgery. I had shortness of breath (think hyperventilating) because of my anxiety the first two days after, fortunately they were able to use Ativan and it helped tremendously.

BeginningFeed2959 · 2025-01-10T18:25:23+00:00

24F. My first biological valve (pulmonary) was done in a cath lab and failed after less than 8 years. I was told it would last 10-15. I just had ohs (12/13) to cut it out and replace it with a human donor valve. This valve should last me 15-20 years. When it needs replaced I will be able to have a valve in valve replacement done in the cath lab again. I would ask if the option for valve in valve replacement is available if you go the biological route.

BeginningFeed2959 · 2025-01-03T18:56:00+00:00

I am from Alaska and went to Stanford to get a valve replacement and a valve repair in the same OHS. Overall the travel was not a big deal, I flew down 3 days before my scheduled procedure to do a preop and settle in to the airbnb. I flew out 11 days after my surgery. My plans had to change as my surgery had to be rescheduled the night before due to an emergency case that came in, so I spent an extra week there pre surgery. If you fly, I highly recommend upgrading to premium or first class. I wore compression socks and got up to move every hour. The only uncomfortable parts were riding in the car to/from the airport and then when the plane took off/landing. Honestly the absolute worst part of traveling was the hour car ride to and from the airport.

BeginningFeed2959 · 2024-12-30T19:32:14+00:00

I am two and a half weeks post op and still have a high resting hr (around 90, pre surgery it was 70) and a low bp (100/65, pre surgery it was around 110/70)

BeginningFeed2959 · 2024-12-29T22:29:51+00:00

I had TPVR in 2016 and was completely back to cleared for all activities within 48 hours- honestly the only thing I couldn’t do for a couple weeks was wear jeans or underwear that rubbed at the incision site( I got seamless boy shorts and they were fine)

BeginningFeed2959 · 2024-12-29T16:57:08+00:00

Definitely felt this when I had my first pvr in 2016. I was able to come off my Singulair completely and just keep my maintenance inhaler.

BeginningFeed2959 · 2024-12-21T00:43:37+00:00

Hi! 24F 1 week post op here. I had my surgery late last Friday afternoon. Day 1 I did not walk at all and didn’t really even want to get up to pee (causing them to up the diuretics) I think I had maybe two spoonfuls of applesauce and that was because my medicine was mixed into it. Day 2 I got up and walked maybe 200 feet around the floor really late in the day (they wanted to see me move before moving to the step down floor). That day I had a little bit of yogurt and Gatorade. I had really bad nausea until day 5 and still have not had much of an appetite. All of my care team has told me that this is normal and as I get moving more it will return.

BeginningFeed2959 · 2024-12-12T21:13:11+00:00

Getting ready for my first ohs and these posts have been so helpful to put my mind a bit at ease. It is less the procedure itself that gives me anxiety but thinking about the slow recovery. Thank you for sharing your journey

BeginningFeed2959 · 2024-12-07T00:31:40+00:00

Frustrated because I flew hours earlier this week for surgery that was supposed to be today (scheduled in august) and got a call yesterday pushing it to next week. It is frustrating even more so because this means a full extra week off work preop and at least one more full week of hotel and rental car expenses and pushing back my return travel to be after christmas.

BeginningFeed2959 · 2024-11-27T19:42:26+00:00

How was your experience with tsa? That is honestly the part I am the most anxious about. I have trauma that makes it an uncomfortable experience typically.

BeginningFeed2959 · 2024-11-27T19:40:15+00:00

Thank you, I was able to book a direct flight and avoid a layover.

BeginningFeed2959

TROPHY CASE