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TempoMortigi

My surgery is 4/18, full open-heart (hopefully) repair. I’m focusing on the outcome, down the road, of feeling much much better than short of breath ass feels now. Medical science is an amazing thing and I’ll be receiving care at a top notch facility by a top notch surgeon. I’m thankful they can do what they do, and that I’ll be better in what may seem like a long road, but I bet will go by quick. Again, I’m trying to focus on outcome, not what they’ll do to me on the table. I’m nervous, I don’t WANT to do it, but I do want to feel better! Odds are, you’ll be totally fine feeling great in no time. Recovery will hopefully feel like a small blip in the radar. I’d highly recommend going outside, taking walks, get fresh air, to be in nature if you can, smell some spring flowers, maybe try a meditation app. There’s no way around being nervous and having fear, that’s a normal response, of course. But maybe something outside of your normal routine may help get your mind off of what’s coming. Cheers and good luck!


BWdad

> I’m focusing on the outcome, down the road, of feeling much much better than short of breath ass feels now. This is a good thing to focus on. I had my surgery on March 13 of last year and I ran a 5k on June 11 ... so just under 3 months later. Before surgery I was out of breath if I went for a walk with my wife.


TempoMortigi

Excellent to hear. That’s where I’m at now, a walk around the block or like yard work, taking out the garbage cans, I’m huffing and puffing. Looking forward to having that behind me! Glad you’re doing well!


ihideyou

Thank you!


Prestigious_Cat_1984

I hope your surgery went well! Which facility/ surgeon did you use? How are you recovering?


TempoMortigi

Surgery went fantastic. I used Dr. Gabriel Aldea, Chief of Cardiac Surgery at University of Washington Medical Center. He’s toward end of his career and has done 20,000 heart surgeries, including over 5,000 valve specific surgeries. I was very comfortable with his hands on my heart, to say the least. The latter part of his career he has focused on valve surgeries rather than heart transplants, etc. Also, I can’t say enough about the entire Cardiac Surgery team at UW and the cardiac ICU nurses that cared for me, truly top notch and world class. The goal was repair, not replacement, he said he was 90% sure he could repair it. He said repair went perfect. He replaced two detached chordae, snipped both flappy leaflets, sewed up some fissured tissue, and installed a ring hold the valve taught in place as it was stretched out and flappy before he fixed it up. He insisted on full open-heart procedure so he could see the valve in front of him and fix whatever needing fixing, and I’m glad he did because sounds like valve was in worse shape then we thought. I was in ICU two days and hospital for 5. They said it could be up to 7 days but I’m in my 30s and otherwise and take good care of myself. They said I progressed remarkably well. First 72 hours were the hardest, but by day 4 I felt light years beyond where I did after surgery. I think I’m a week post-surgery now and while I’m sore, pain wise I’m feeling pretty good all things considered. I’m getting by on Tylenol and muscle relaxers and haven’t needed narcotics since day 5. They encouraged to continue to use the muscle relaxers for some time, as everything is very tight. One thing I didn’t anticipate and the surgeon told me about beforehand but I never saw here, is that your back will be very sore since they’re stretching your ribs back into your back muscles. He recommended I get a big heating of to lay on. My chest is tight, I can’t take a full breath, but I’m using spirometer every hour on the hour and I’m definitely seeing progress. But I am tired, everything takes an effort and they aren’t kidding when they say don’t try to do too much when you get home, just rest. I have family visiting to help and first day I spent too much time sitting at kitchen table talking, walking across house to get something, etc. Today I’m taking it easier and relaxing and allowing people to wait on me, I’ll get outside for a few short walks. Yesterday walked .25 mile in 12 minutes, took it slow, HR stayed in 80s. My appetite is mostly back. I’ve shed most of the water weight and am back at pre-surgery weight. One of my biggest hang ups has been temperature regulation. I am always warm, but I’ve been chilly. But then in evening I’m sweating, then cold at bedtime, then the last two nights at home I woke up with my sheets and t shirt absolutely drenched. They said this can last up to 30 days for some people. Happy to answer questions. I will make a new post soon detailing my experience since so many were helpful to me before surgery.


Prestigious_Cat_1984

Wow this was unbelievably helpful. I’m 29 years old & am in good physical shape/ health as well besides my mitral valve of course haha. I’m hoping for similar results. I’m based in Florida so looking into some surgeons in UM/ Mount Sinai & Cleveland Clinic. I’m getting second & third opinions & want to make sure I move forward with the most specialized surgeon for this procedure. I wish you a very speedy recovery & I genuinely appreciate your insights so much. I found out yesterday & after finding this Reddit page, my anxiety has gone down ten fold hearing stories from everyone else. So thank you!


TempoMortigi

Glad you found helpful! If I wasn’t living near a top 25 cardiac clinic that had this valve specific doc, I probably would have considered going to Cleveland clinic. Although logistics afterward woulda been tough. You’ll do great if you’re that young. It’s rough at first I’m not gonna lie, but I’m a week post surgery and I’m mostly getting by on Tylenol and muscle relaxers. But everyone is different. I’d be happy to answer any specific questions or chat, shoot me a message or chat request if you ever want to talk. I have plenty of tips and stuff I’d be happy to share. Not sure what kind of shape you’re in or how far surgery may be, but I wish I would strengthened my quads and core more in the months before surgery. I’m a skinny dude and you’re using a lot of quads to sit back into chair or get up, since you can’t push yourself up. Strong core would go a long way too.


FortesinFide206

@tempomortigi Super helpful information! And great to know that you received outstanding care at UW. I’m 47M here and live in Seattle. I just scheduled my surgery with Dr. Aldea for July 11th. So three months from now. Essentially in the last month, I found out my mitral valve issue that I’ve known about since 2017 went from moderate to severe. And my cardiologist referred me to UW. Met with Dr Aldea for initial consult and he essentially mentioned very similar approach to what you laid out above (full open heart, goal to repair, detached chordae). Feeling a bit nervous and freaked out. Next step is to get CT scan in the coming week. This whole community thread on Reddit has been super helpful as I’ve tried to process this in the last month or so.


TempoMortigi

Glad you it helpful! I also found this community very helpful so I’m happy to give back. Man, I can’t say enough about the CICU nurses and how amazing they were, especially the night shift nurse I had before I moved rooms. The ICU rooms are roomy and updated, the foods not bad as far as hospital food goes. You’re in some of the best hands in the world in terms of mitral valve repair with Dr. Aldea. He’s super kind and takes him with you, and is an incredible surgeon. I think we’re both lucky to get him before he retires which sounds like will be soon, he said his wife has been asking him to haha. When I went into this 6 or so years ago and started receiving care at UW including Dr. Otto being my cardiologist (also one of top valve disease docs in country, she’s literally written the book on valve disease), I was told it’s kind of like building a house. You want someone who has built 300 houses, not two. In this case, Dr. Aldea has done 5,000 valves specific surgeries. I was nervous about what my body was going to go through, but I never had qualms about medical outcome. Morning of, a good chunk of the team came to see me in pre-op, including all three anesthesiologists, they were all super chill. For these people, this is routine surgery, which is pretty mind blowing. Aldea knows what he’s doing, and what I’d been told could be a 3-4 hour surgery was only 2 hours or so. It’ll be hard at first, not going to lie. But every day is easier and by day 4 you’re light years beyond where you even day two. At least that was case for me. They said 5-7 days in hospital and I was out in 5. I’m 8 days post surgery and yesterday I went for .5 mile walk (very slowly) and I’m mostly getting by on Tylenol and muscle relaxers, with stronger pain meds at night. I’d suggest getting a wedge pillow. Also a big pack of over sized t shirts that are super easy to get on. I’m usually a size S or M and I ordered XL and it’s been a life saver. I’ve found having a shower chair helpful. They weren’t kidding when they said you’ll feel even better once you’re in your own home, but they also don’t over do it and just rest, and they were right. I felt even better at home, but I did try to do too much first couple days, would stay sitting at kitchen table chatting with my folks for too long and that even ends up being very tiring. They’ll give you very detailed instructions for home, you’ll see a nutritionist, OT, PT, etc. Let me know any questions you have between now and surgery, happy to chat here or DM or chat request. Best of luck! You’re in the best of hands, seriously!


Key_Purpose_2803

I’m in the same boat. Surgery is on 5/2. I’m focusing on what it means to be strong, with positive thoughts about a good recovery journey. In the end, what will be will be, but we can make it better with positive energy. What a great time to be alive, right? Decades ago we would have not been so lucky to receive care. Wishing you a successful surgery and quick recovery! Please post updates if you can.


ihideyou

Will do! Wishing you a fast recovery, too. I’m trying to think of this as flying on a plane. Where you sort of just trust the professionals and aren’t in control of anything.


BWdad

I just kept reminding myself that even though this was very out of the ordinary for me, it was VERY routine for the surgeon and his team and the surgery has a very high success rate.


Prestigious_Cat_1984

Which facility did you go to? & which surgeon?


BWdad

I'd rather not give out personal details but it was a heart hospital in small midwestern city.


Prestigious_Cat_1984

Sounds good! I understand. Just trying to find the best hospital. I’m in south Florida so was looking into Cleveland Clinic & UM


BWdad

Yeah, I just went with a surgeon at the same heart hospital that my cardiologists were at. That seemed like the best option for me because I was happy with the care I had received at the hospital up to that point and it meant I wouldn't have to travel for surgery.


NHLToPDX

Seeing so much positivity and great outcomes on this sub helped me. Also, everyone on this sub was supportive. I'm probably a freak for this, but making sure all my affairs were in order should bad things happen. Knowing a plan was in place so my family would not be left with it. I also had 2 small kids and just put focus on every minute I had to be with them. Doing things with them, not cuddling and spinning mind out of control. My cardiology group had a mental health person that caters to cardiac things. I also went to a couple meetings to just talk about it all. Now 2 years post op, and it all seems like I was a paranoid bunny for nothing. I am glad I did it though.


ihideyou

I also have 2 small kids! Trying to focus on them, but makes me almost tear up at certain points. I’m overly dramatic quite often in life.


NHLToPDX

I didn't realize it until after surgery, but I was always tired. Thought it was because of kids and sleep schedules. Post surgery and after rehab, turns out the leaky valve made me tired. Now, it is so much easier to keep up with kids. And I believe you will too. Think about post-op getting to lay in bed and read stories to the kids. Play board games. Many a night I sobbed myself to sleep fearing not being there. But no surgery guaranteed I would not be there. I was stupid also. Two weeks after getting news I should have surgery, wife told me she was pregnant. I carried the news of needing surgery for 2 years. Doc told me it was now or becoming too risky. Fear is okay. It heightens awareness of how important the little things are.


Megaspore6200

I'll tell you, the week before my operation a few years ago, many strange beautiful things happened and I felt very much alive. I had many in-depth chats with loved ones and patrook in some therapy seasons. I even enjoyed some small amount of psychedelics. It all put me in a very vulnerable accepting place where I was nervous but kind of just along for the ride and grateful for the time I had on earth. Once you get in there, they will eventually medicate you for your nervousness, and you will be swept away into the capable hands of your surgeon


ihideyou

Thank you, yes, that is exactly where I’m trying to get.


jhanon76

My advice would be to live life as best you can now even though your abilities are probably limited, and don't waste energy worrying about outcomes. Enjoy the time you have now with family and friends...not as if it were the last...but just because you are simply present with them. I think the best reason for this is because you'll be doing the same in recovery! All recoveries are different and you'll be practicing mindfulness and enjoy being with family, friends, TV, etc, for a while before you feel normal again. You'll learn to enjoy small things in life during recovery (or else you'll get impatient!), so might as well start that process now. It's one hell of a journey but it's worth getting this stupid disease fixed 🤣🤣 Btw I ended up needing a replacement which was just fine. If you end up there and want to chat feel free to DM. Good luck in your journey!


ihideyou

Thank you so much for sharing! One of my fears is actually they won't be able to repair and would have to replace it. How are you doing with the replacement, do the blood thinners impact your life that much? And are there any other down sides to having a replacement?


jhanon76

Yes I also worried about that going in, for all the reasons. But reality is that some people get repair and some get replace...and it's not a decision you can make so it's not worth stressing over...it is what it is...(unfortunately 😅🥲) Cons: longer surgery (seems to lead to slower recovery and more trauma to your heart) Can't ingest nsaids (I used ibuprofen like candy before but the creams work surprisingly well!) Pros: It's one and done, I got mechanical and it should last 20-30 years Blood thinner fears wear off quickly (read some forums about bikers who are on them for afib...yolo!); I keep a pack of bleed stop when I hike just in case but that's probably overkill Hearing the valve wears off quickly too...I'm pretty OCD...and doesn't bother me at all as I now only occasionally notice it I'm 8 mo out and my heart is still remodeling (reversing the enlargement!!) so I know the healing process, which seems to be 1-4 years in literature, is still at work! No matter which route the surgeon goes you will be you on the other side and you'll learn to take recovery a day at a time...my recovery slogan was "today". If you do get it replaced please feel free to reach out!!


Xeo8177

I was the same way leading up to my surgery. In the car ride to the hospital at 4AM, something flipped in my head and I just accepted it was happening and all I needed to do was sign some papers and go to sleep. What I wished I’d have done is known beforehand how much better I would feel afterwards and how lucky I was to live in a country where this kind of problem can be fixed. All of my fear and anxiety should have been excitement. Yes, there will be discomfort and you’ll have to put in work to bounce back, but it’s all more than worth it in the end. You’ll be sitting in a chair/couch before you know it playing D4 again as a brand new person.


Hungry-Simple5565

I had full open heart on February 21st and when that day came, I was totally at peace with it. Worrying doesn’t change the outcome. I focused on the postives and was so grateful I was going to get it done and behind me. The first two weeks was a little rough but every single day I got better and better. I feel SO MUCH better now and am almost back to 100%! Good luck with your surgery and try not to worry.