Sara's Journal

Rose Madura  Oh Sara, you're really having a difficult time. My advice is to keep on being your own advocate. You might consider getting another opinion if it were me.  It's frustrating when things keep going south. Look up and stay strong. Godspeed.

David Carriker  Does your sternum hurt in any specific area, for example the top of the incision, the bottom of the incision or the middle only? Does it hurt all the time or when you move a certain way? I agree about getting a second opinion. Stay strong!

Marie Myers  I am sorry that you are having these issues. Have you consulted with a pain specialist to see if there is any type of nerve block to try with the Sternal pain? I don’t know if that is possible, but you could ask about it.

Susan Lynn  Sara - I'm so sorry you're going through this. I agree with Rose, it's time for another opinion. A fresh perspective might be helpful in resolving your issues. Keep the faith - the night is always darkest before the dawn. Please keep us posted.

Andy Teel  Sara, don’t give up. Medicine is science and science is unfortunately not exact and every body is physiologically different. There are so many brilliant doctors out there maybe it’s time to start making some calls.

Klara Čičić  Dear Sara, most of us with valve problems have some degree of diastolic dysfunction... It usually isn't as bad as it sounds. It depends which stage of diastolic HF are you in... I hope you get clear anwsers from your cardiologist that will calm you down. Keep us posted and stay strong

Ana Brusso  Hi Sara, it’s good to hear from you. I’m glad you continue to live your life in spite of your after surgery symptoms. Hoping you get answers and remedies for them. I will continue to keep you in my prayers. God bless you 

Robert Miller  I didn't have any pain after surgery so I can't give much advice. Having said that, did you have any popping noises after surgery? Did you discuss this with your surgeon? Did they do an x-ray or CT? Is it always in the same area? Is it where they cut you or does it seem to come from a different area?

Ana Brusso  Dear Sara, I’m sorry you are still struggling with this issue. Will continue to keep you in my prayers for healing and good health. 🙏❤️

Greg Lewis  Yep! I hear ya!!  You are not alone, in this Sara! I am 16 mos, and still have muscle pains,and the same issues you do. Hopefully it goes away, but if not, i can walk, i can ru...ok not run. But i have a great life. Just different !! Cheers! 

Robert Miller  @Greg Lewis have you considered acupuncture and massage? Considering that your surgery was 16 months ago any of this shouldn't be a problem (check with your doctor). I had muscle pain for some two months (unrelated to surgery). Acupuncture and probably more likely the massage did help a lot. This was my first time doing acupuncture and massage but after 2 months of almost constant muscle pain I had to try something... Your issue might be completely different but I just wanted to mention it.

Greg Lewis  Thanks, Robert! Appreciate it. I have not tried accupuncture in the chest and abs. It all gets better, and then when i work it, can start to have problems. It gets better, though. I go to Massage, and Physiotherapist. The surgeons and Cardiologists, doctors, say that because of the trauma, and the chest being open for so long, it is not ABnormal ( ha ) to have a longer recovery time. BUT its getting old! Just would like it back to full strength. Eventually, i guess.

Deena Z  Sara,  this has got to be beyond annoying.  I wonder if one of your "staples" that closes the sternum broke or is misaligned?   Or nerve pain.

Rose Madura  Sara, I had very little chest/sternum pain. I did have muscle pain for quite a while but it eventually got better. Maybe a call to your cardiologist will put you at ease.  Please keep us posted. 

Sara Latina  I have had so many x-rays and CT scans in the last year - all show sternum is ok and the sternal wires are all in place.  I have also tried acupuncture (did not help, actually made things worse) and been doing PT for the chest for 10 months now.  Seems like no matter how much stretching or exercise I do, the pain still lingers.  

Deena Z  Well, Sara, you've been pretty comprehensive.  Wonder than if it is nerve pain.  There are tests for that via a neurologist.  Not that you want to go to yet another doctor/specialist; get that.  But there is not much else that can be causing the pain in your chest.  The CT and Xrays check soft tissue and bones.   Don't your doctors give you a sense of what it could be via a process of elimination?  

Sara Latina  Cardiologist says keep doing PT.  I have my physical with my GP in few weeks so I’ll see what she says.  I’m just not sure what more I could try.   Still having breathing issues so that’s my main focus to resolve.  But a good nights sleep would be so nice too

Deena Z  How awesome, Sara!!  A new, better you and a great cause.  I remember all the  trials and tribulations you went through to get to this sentinel event.  Hear you roar!

Ana Brusso  Thank you Sara Latina for enduring and being patient. Congratulations on your first year anniversary, great way to celebrate, 10 miles is a milestone. Continued good health and God bless you 🙏❤️

Sara Latina  Thanks everyone!  Mohammed - due to a bicuspid aortic valve with severe stenosis I had the Ross procedure 

Rose Madura  Congratulations.  Your positive attitude will help you heal.  I do think the nerve damage will get better in time.  God bless you!

Deena Z  Congrats, Sara!  You really did go through a lot.  The rehab is such a confidence booster in your ability to push yourself.   I think the nerves may regenerate, right?   I assume you tried using a heating pad to help with the pain, but just in case throwing it out there.  Enjoy those beautiful New England summers.

Adam Baumgartner  Nice. I also have some chest nerve issues, though not as severe as yours. I hope things continue to improve for you. 

Timothy Andre  Congrats Sara!! I just started rehab and look forward to graduation as well. I'm sorry you are dealing with nerve issues. Hopefully that will work itself out soon. Keep up the good work. God bless you

  So sorry to hear this Sara but glad you are getting better and finding something positive like reading. God bless you heart warrior. ❤️🙏

Ginny Turner  Sara, so sorry about Covid on top of everything else you've gone through. Glad you got the antiviral med and hope it helps you feel better soon. Cheering for you!

Timothy Andre  Sara, I’m sorry to hear this news. I can relate! I came home from the hospital with Covid and didn’t know it until it was too late for antiviral meds. It was no fun and definitely made every day so much harder. No sleep because the shortness of breath was overwhelming. I couldn’t get enough air to sleep at night. I thought I was dying. Instead of sleep I was awake all night praying that all would be well. And, eventually I turned a corner as you described. We both can say we recovered from a major open heart surgery procedure, the “Ross” as well as fighting Covid at the same time. My heart warrior sister, I’m happy you have kicked  Covid and are back on a recovery path. One day at a time never made so much sense until now. Keep pushing forward and I wish you all the best ❤️‍🩹🙏🏽🦾

Timothy Williams  I've had a pretty good recovery from OHS w/medium sternotomy.  I'm at 6 weeks post surgery.  Getting in/out of bed is essentially no issue.  Coughing hurts a little and sneezing hurts bit more, but not afraid to do it and I don't need the pillow.  Hopefully you are feeling gradual progress even if seems slow.  My doctors told me to expect noticeable differences weekly.

Rose Madura  Honestly,  I didn't seem to have much sternum pain at all. Most of my pain waa from where the main line was.  Plus shoulder pain. I'm sorry you are experiencing this. Hopefully it will improve. 

Deena Z  Sara, I had little pain.  Had full sternum cut at Mt Sinai for mitral valve. But I have read other people on this site that have remarked  about pain months later like you. It might be due to nerves and not the bone that was cut.  Hope others chime-in, in this regard. 

  Congratulations on your 6 months anniversary Sara. I continue to keep you in my prayers and hope you will get through your current struggles. God bless you 

Martin Smith  Sorry to hear you're facing these challenges, Sara. Wishing you a smoother path to recovery and a better 2022 in spite of the rough start.

  Oh Sara, I’m sorry to hear this. I too had pleural effusion after my surgery and remembered well all the symptoms, the meds, having to be wheeled to the clinic to get the x rays done etc., eventually it was taken care of. I do hope and pray you will also get pass this soon and continue 2022 feeling better and recovered. God bless you

Rose Madura  Wow, two steps forward and three steps back. I too had a pleural effusion and they are no fun whatsoever. My thoughts and prayers go out to you. I sincerely hope you feel better soon.

Ginny Turner  So sorry for another setback, Sara. You've been through a lot. Hope you're back on the upswing soon and continue on to a great year of recovery and healing. Stay strong - we're cheering for you!

Deena Z  Hi Sara, you've been through so much. I hope that they can get to the root cause for your pleural effusion, so this time is the last time. Hang in there. It's only the beginning of 2022! Said a prayer for you:)

Cameron Peek  Very sad to hear you had another set back. I have also had a second bout of pleural effusion in August five months after my surgery for mitral valve repair. I am back on twice a day colchicine. I am curious about what a pulmonologist says. My cardiologist and GP sent me to a rheumatologist to try to determine if some other underlying condition was causing this again. I could not get an appointment until May. Hope you are feeling better quickly.

Alex Hunt  I had a similar issue. It started spontaneously bleeding the other week (probably from irritation). No magic solution from me I'm afraid. I just bandaged it up.

Sara Latina  I started bandaging it up now too. John my surgery was eleven weeks ago. I had some complications so recovery started difficult and slow. I am now in cardia rehab and while I'm not where I would have liked to been, I am doing better each day. Worlds better than I was a month ago.

Deena Z  Sara, the top of my incision was the last to lose it's redness and was for months looking sore, but not open. I did not use any abrasive soaps (only AVEENO bar soap, definitely not soaps like DIAL that are antibacterial but also irritate my skin big time; ) and I only wore cotton blouses,. If you are exercising vigorously now and perspiring, this can also cause irritation there, so make sure you wash this area gently after such. Hope this helps, tell me how it goes!

Kim Mickelson  My surgery was 11 weeks ago, too. Some shirts--especially when a seam hits it, irritates it. I use the silicone scar strips on it, you can get ScarAway or I also bought the Walgreen's brand, which are clear. You can leave them on up to 23 hours, but I don't usually do them for that long. You can wash them and reuse them. I cut them to about 3/4" wide. Love them. I also use at night Mama Z's Oil Blend (google it, and make it) that a friend made and sent me--Vitamin E, plus jojoba oil, awesome...helps with wrinkles too!

Martin Smith  Your frustration is understandable. But at ten weeks you're still in the early days of recovery from major surgery. Each person is different. I went into and came out of my Ross surgery pretty strong, but my recovery had bumps and setbacks along the way. I don't really understand the ins and outs of the trauma our bodies undergo during such a complex procedure, but I was reminded here and elsewhere that trauma is what we experience before, during, and after major heart surgery. The experience challenges our physical, cognitive, and affective domaines. Sometimes patients' gleeful reports of their swift returns to pre-operation levels of activity and vitality, while they can be inspiring, can sometimes contribute to a sense of frustration at our own slow progress.

Deena Z  Sara, I had a much less complicated procedure than you, and at 8 months out I am still very tired. Before the surgery I was a night owl. Now, by 8 pm, I am exhausted. My cardiologist said my heart needs more time. I would still discuss it with your cardiologist, as you have been doing, but would also think of the “extra” sleeping as healing time.

Civita Fahey  I feel the same as Tracy.. I could get things done, but, my energy level came back to normal around a year.

Deena Z  Sara, I had my second Pfizer shot three weeks after my open heart surgery. (we both went to Sinai.) My cardiologist said to go with it. Afterwards, I was tired and had a mild fever , so I took Tylenol and napped for three hours and woke up fine. But, I totally get while you would be hesitate, given your complications. I just had my booster shot seven months after surgery and had no side effects whatsoever. So, maybe there is a compromise as to timing. Not sure how out and about you are with the public.

Kim Mickelson  My hospital--the same where I had my surgery, sent me an email to get the booster about a month after. Ask your doc.

  Praying for your recovery Sara, yes a lot of different things happen in recovery that we find out as we go along, good luck in rehab. Blessings

Martin Smith  Hello Sara! I think I have some idea how challenging your recovery has been. 14 months ago I elected to undergo a Ross procedure specifically because I was active and fit all my life. The short version of my rehab story is that I was more than a little disappointed when the doctor ordered the technicians to halt my 6-week post-op stress test on the treadmill due to unacceptable BP readings. I was only about 5 mins. into walking on a very modest incline. What?! Me? That wasn't part of my plan! It was a setback that was far bigger psychologically than what the result actually implied about the state of my heart. The good news: recovery and near complete return to previous activity has been slow and steady with a few small setbacks along the way. I'm 14 mos. post-op, and I probably could have recovered more quickly with some fine tuning on my goals and motivation, but I chose to err on the side of caution. At some point after my operation certain ideas I had about myself and my recovery took form: what is the rush?

Deena Z  Wow, Sara you are beyond a warrior.— gladiator status.
Sounds like the hardest part
is behind you. You will love cardiac rehab and see tremendous gains. You are unstoppable !

Marie Myers  The Ross procedure is a complicated surgery, and I am sure it was difficult for you in those first 4 weeks. Sounds like you are making headway, though. Don’t get discouraged, it is a slow process to heal!

  So great to hear your good news Sara. I have been praying for you to overcome those hurdles in your recovery and glad to hear you are. Smooth sailing from here on. God bless you and continued recovery 🙏❤️

Ginny Turner  Sara, you've been a true heart warrior with an amazing outlook! It's great to hear how well you're doing. Hope you feel better each day!

Susan Lynn  Sara - Sorry you had to go through so much pain. Sometimes the road to recovery is a little longer and more winding than we expect, but it sounds like you have a clear path ahead. Take it easy; don't overdue it on the good days. Slow and steady definitely wins the race! All the best to you!

Deena Z  Sara, you have surpassed being a warrior; definitely a gladiator. What doesn't kill us makes us stronger. -though you probably wanna take a break from strength training for now! :)

Dylan Kempers  Sara, my surgery went well, but had a few setbacks that brought me back to the ER. It's understandable to feel a little bit frustrated because not everything is going as smooth as expected, but in the medium and long term you'll see the benefits of the surgery.

Deena Z  Hi Sara, it's frustrating to have "side effects" of the surgery, but what you are experiencing is not uncommon. The hardest part is over and you will get over this hump. I assume you told your Mt. Sinai surgeon about what is going on or might have even gone back there (?). Either way, make sure they are well informed. Know that you will soon be walking outside enjoying the beautiful New England Autumns! Thinking of you...

Rose Madura  Hi Sara. Hang tough. I had four readmissions with complications and it is very scary. Just when you think things are going well, you have an issue. Praying you'll get through this with no more complications.

Sara Latina  Thanks everyone. I’m thankful that my complications aren’t the really bad ones. Plus I met some really great people on the cardiac floor here at Hartford Hospital. Tomorrow they are going to do a thoracentesis. Praying I may go home afterwards if cardiologists clear me. They think the skipped heart beats will stabilize once I’m off the IV lasix

  Look at you Sara, finding all the positive things while going to these complications. I’m sorry you have gone through them but you are being well taken care off. Hopefully you’ll go home tomorrow and continue your recovery. Will pray for continued recovery and good health. God bless you

Ron Broadhead  Sara - you have an absolutely fantastic outlook which seems to be a key ingredient to a successful outcome. Glad you are feeling better and the incision is healing. Keep on moving forward and staying positive.

Ginny Turner  Sara, so glad you're feeling better, despite the setbacks. Your attitude is amazing! Hang in there - better days are just around the corner.

Richard Munson  Sounds like you have a very supportive family for your recovery. And here i thought my oldsmobile was your dream vehicle. Who knew.

Mike Tirrell  I am not sure you could be in any better hands than those of Dr. Stelzer. Best wishes for a quick recovery.

Jay Heagerty  Sara, I am confident you will have a positive outcome! Prayers and positive thoughts. I am three weeks out and doing great. You got this!

Rose Madura  Hi Sara, I tried to focus on the positive thought that this surgery was going to make my life better and longer. The odds are in your favor. Sometimes people would listen to soothing music. I found watching documentaries on YouTube took my mind off things. You can do this. You'll be so glad you did. God bless you.

Rita Savelis  You don't have to stay strong. It's okay. You can be vocal about how you feel. Putting words on it can help. Talking to a therapist can help. You can be honest with your son. And you may not get everything done that you need to before surgery but that's okay. There is so much pre-surgery anxiety, as well as post-surgery anxiety. It's all so normal. So breathe and accept that this is normal and it's hard. I feel for you with not being able to lie flat and then getting anxiety from thikning about the shortness of breath. That happens to me. I wish you some peace.

Thomas LaCombe  With 100%
I am having the same feeling 3 weeks out

I don’t have advice at all, more just want to say you’re not alone

Lena Afanaseva  You will be on recovery side so soon! Trust your doctor, they doing this everyday! And what I remember, waiting was the worst!
I am 2,5 years post surgery!

Sara Latina  Thanks everyone! Thomas you are right when you say you're not alone. This group is a godsend to have. Just reading peoples posts and stories makes me feel better and more prepared.

Joseph Heinzmann  Hey, fellow Connecticut patient! It's a rough couple of weeks mentally before surgery. I know that first hand. I called the ambulance once a couple of weeks before, got in, got hooked up, and almost immediately, heart rate went back down. They let me out and back inside with a reassuring reminder that if I needed to call them, they would come back, but that they expected I would sleep well. It's hard sometimes. What worked for me was prayer, meditation, and old movies that I know really well so I could follow along without working too hard on it. But it's different for everyone to find that calming place so you have to go with what's right for you. Believe in yourself, trust the medical advice. You are scheduled at a great hospital with a great surgeon.

Liz Draeger  I had the exact symptoms. Could not breath well lying down and very anxious. Sounds like you need this surgery so do everything to relax. I asked my doctor for an anti-anxiety which helped greatly. I also listened to Andrew Weil tapes on breathing. Very calming. I listened every night as I would fall asleep. Learn to sleep on your back, it will be helpful after surgery. Again the tapes helped me stay relaxed and calm. Also check out Jane Erhman, she has created an audio tape I think called, "Before surgery". Very, very good. Please email if I can help....Liz

Liz Draeger  Try to stay relaxed and calm. I know its difficult but it's important. Do everything you can to distract your mind. About the only thing which passed the time and helped me were fun movies.

Holly Wale  My surgery is scheduled for 10/6 and I am thankful for your post and the responses! I'm a very private person so I've mostly read other people's accounts and found them to be very helpful. Thanks for including me here.

Lawrence Kirchner  7 months post-surgery. I think it is okay to be scared. I had all sorts of fears going in. When I got to the day of surgery, what impressed me most was how professional everyone was. It's not a small team that takes care of you before, during, and after surgery. I quickly recognized that each person I met had a specific role and they were experienced in that role. My hospital does a lot of these surgeries and I felt that they took really good care of me. I guess my point is, they know what they are doing. Part of their role is to answer your questions and help you get through the rough parts. (To be honest we have it easy during the actual surgery). Afterwards, I was always asked about my comfort, everyone that came into the room was eager to help. (Of course, I couldn't see the smile on their face with COVID protocols, but I sensed they were talking to me with a smile on their face). Trust your team and be confident that you will come through this fine.

Mike Tirrell  Sara - This is a scary thing, there is no question about that. 3 weeks out, I was concentrating on getting the things done that I knew I needed to complete before surgery for one reason or another. For example, trimming the hedges, weeding the flower beds, etc because I knew it would be a while before I would be able to do them again. Mentally, I just tried to focus on the things that I could control and think about how good I would feel post-surgery. I tried to stay busy, keep my mind occupied and spend time with family and friends. I wish you the best of luck for a full and speedy recovery.

Barb Edmonds  I would be concerned about a heart patient who isn't anxious.... it is a scary life event. It seems that you are well informed about what to expect from both medical professionals and friends here in this group. I think that all of this advice is good advice. I wish I had known about this forum before my surgery... I found it during my recuperation. The weeks leading up to my surgery were so busy that I didn't really have time to think. My daughter's wedding was coming up, my mom was not well and then five days before my surgery my drunk neighbor shot my house! I wonder if anyone can beat that story!! I don't mean to make light of it. It was, indeed stressful but I just kept focusing on how good I was going to feel after my mitral valve surgery and I do feel well physically and have restored confidence in my body. Would your doctor approve of using CBD for sleep? It really helps.

Julie M  Sara, I had OHS for mitral valve replacement & tricuspid repair in April 2019. (This site was a godsend, far more informative than any words from medical professionals). There's no way to completely eliminate your apprehension; it's normal and understandable. I have been a "medical minimalist" all my life, avoiding all but absolutely neccessary medical involvement... Before my OHS, I had never been in a hospital since birth (I'm 70 now), never had any surgery beyond tooth extraction. So of course, I was quite nervous. Here's all I can offer:

Putting my trust in God, whatever the outcome, was very important. That meant even coming to terms with the pretty remote possibility that I might not survive. I had to just know, if that happened, it just meant my time was up, and that's all. But I remained aware that it was MOST likely that I'd survive and recover. And I did.

I kept myself occupied .... Nothing wrong with diversionary tactics for most of the day. No point in keeping your focus on something that keeps you stressed ... And it's natural to feel stressed about uocoming surgery.

To the extent I could, I put myself on "autopilot," matter-of-factly just accepting the hand I was dealt, and going about my daily business. My sister was amazed by how calm I was the night before and the morning of the surgery. (Family support is huge ... My sister was able to travel to be with me through my surgery & first weeks of recovery, bless her.). I surprised myself, in fact!

I had the good fortune that my memory was retroactively wiped clean from the drugs I received .... After waking up as I was being wheeled from the ICU to my cardiac unit room,

William Trankle  Don't fight it, just treat it like an adventure. I had the weird viewpoint that I was going to get great reactions from people when I casually dropped phrases like, "After my heart surgery," and, "Having had my chest cut open I can say . . . ." I'm probably in the minority with this though!

Julie M  ....(sorry)... I remembered nothing after having walked the day before into a small room to change into a gown the morning if surgery. My sister said I was talking, and had given a thumbs up and a smile after surgery in the ICU, but I didn't remember any of it! A godsend, hope you are that lucky!

My week in the hospital was fairly uneventful and all I recalled from the surgery was a godawful nightmare from reaction to the anesthesia in the recovery room. It freaked my sister & niece out that six people had to restrain me (and I'm 105 pounds). I recall that nightmare vividly and wouldn't wish it on anybody! But it was the worst part of the whole experience, and that's not a bad thing!

Pray, breathe, and trust that in all likelihood, you will be fine! The hard part isn't as bad as anticipating the hard part, and your life will be enhanced after your surgery! God bless!

Michael Kohring  Sara - I couldn't agree more. It is scary and nerve racking to think about. I had my aortic valve and arch replacement at Cleveland Clinic and I took advantage of the meditation audio tracks they provided. I listened to them every day and night, often falling asleep to them. I listened leading up to the day of the surgery. It helped take the edge off and stay positive through a scary and sometimes uncertain time. You will make it through. You are in good hands. You will heal and feel good again!

Jennifer Barnett  Hi Sara,
It can be a nerve racking time. I was very ill in hospital before my surgery and it was initially an unexpected surgery due to a serious infection. I was in a lovely ward with a view of a beautiful lake here in New Zealand each day I would watch rowers and sail boats train and race and it helped focus my mind on the positive of how I would be after the surgery and the things I could do again I was struggling to even walk at this stage. Sometimes I would do a little art or read a nice magazine and
that helped to keep me calm. Because I only had 2 -3 weeks to think about the surgery I didn't really
feel very nervous instead I looked forward to being myself again. So I think doing some nice things
you enjoy and focusing on getting well and how much better you'll be once its done. I just wore very loose bras afterwards without wire and that was fine for me. I am 4 years post surgery and enjoy a long walk everyday and feel fit and healthy.

Ron Broadhead  Hi Sara - I think we were all nervous before surgery. Mine was an aortic valve replacement. When I was first diagnosed it was obvious to a couple of gals I worked with that something was amiss - things like me walking into tables, etc. I think that there were probably three things that helped me the most. First, I tried to keep as busy as possible and have my mind and body engaged in various tasks. Second, I realized how far downhill I had gone and that the surgery was the only solution to getting my life back. Third, and this may sound a bit corny, but I ran across a biography of Lou Gehrig by Jonathan Eig. I didn't start reading it with idea of alleviating my apprehension. The bio didn't so much focus on Gehrig's great baseball career but on the man and how he dealt with his illness (ALS) for which there was no cure. His attitude and outlook were a real example and I realized if he could have that type of outlook for his terrible disease then a valve replacement with an opportunity for a much improved and extended life should be comparatively easy. So I ended up with a positive outlook on my surgery that carried over into recovery and beyond. Best wishes to you for successful surgery. Being excited to be on the other side is super good.

I would also say that there's lots of good advice here. We all approach this in our own way.

Cody Au  Sara, I’m 1 month post aortic valve replacement. I was just like you- beyond scared. What I can tell you is it is nowhere near as bad as you imagine. I feel very confident that if I ever need another open heart surgery I will be much more at ease. You will not suffer. Try and relax, take deep breaths when you feel anxious. When this is all over, I look forward to you sharing that this was not as bad as you thought. I hope this brings you some comfort. I had 2 friends who had open heart surgery within the past year and they told me this as well. Now I know it’s true.

Elyse Sherman  Hi, Sara. I had my aortic valve replacement via open heart surgery on 1/15/2021. To quote Tom Petty, “waiting is the hardest part”. In my opinion, the wait was harder than the surgery and recuperation itself because it’s difficult to control where the mind goes, when in actuality what your mind is perceiving is much worse than the event itself. The awesome thing about this website is that we’ve all been in the same position as you, and can assure you that you are not alone. What worked for me was to try to stay as busy as possible, visit with family, friends and read (a lot). I was lucky in that I was asymptomatic and could continue my level of physical activities. The “good” thing about being symptomatic is imagining how much better you’ll feel when you’re on the recovery side. Try to focus on that as your goal and you will get through this process beautifully. Keep in touch with us and let us know how you’re progressing and whether you need any more pep talks. Our family and friends are great, but only we truly understand what you’re going through - use us as a resource or just an “ear” for anything you need. I wish you lots of luck in your surgery, but you won’t need it, you will be awesome 😊

Rose Demske  Six weeks ago I had my AVR surgery for the 2nd time! Believe me I know how scared and nervous you feel! I was petrified when I found out my 11 year old tissue valve was failing / severe stenosis …. The main thing that helped me was meditation anytime I felt overly anxious …. Staying in the present helped so much! Have faith not fear! You got this. I was surprised how ready I was to get on the table knowing I had a great surgeon and team to help me. Im doing awesome and feel great now! All the best❤️‍🩹

E Taub  Recliner was key for me. I also ordered a set of "baby pillows" from Amazon - great for helping me be comfortable. Someone in this group suggested cough drops which was helpful. Bring a picture of your family to tape to the wall - great for cheering me up. Long chargers for your phone or iPad. The bras that snapped up middle were uncomfortable for me -- I used just a soft cotton sports bra in a size bigger than I usually wear so it didn't rub but could only wear those after a while. Earlier I wore soft cotton tank tops to hold the girls in. I too was a list maker. In fact, because I had some allergy issues (meds and adhesive tape), I made 2 lists - one for operating room and one for room after surgeries. Was very helpful for nurses. They liked that I was organized. For example the operating room list I noted my past surgeries which included rotator cuff surgery so they knew to not put my should in a position that would enflame this area. Wishing you well. I know you will get through this with flying colors!

Rose Madura  I used a recliner and i would sleep upstairs for a few hours then go downstairs to the recliner and sleep more. Just after surgery, sleep does not come easily. For me, it came in spurts. Lots of naps so recliner nice for it. One big thing for me was a travel pillow. Helped tremendously in the hospital and when I was home. The hospital gave me a bra that I used if a visitor was coming or if I was going out but went braless the rest of the time. But the surgical bra was most helpful.

Alex Hunt  My top tip is a high capacity power bank for charging your phone and other gadgets. The only outlets they had for patient use were a long way from the bed and it was a real mission getting to them at first. 25,000mah got me through 5 days or so.

A recliner would have been amazing for the first week back home.

Best of luck. You'll be back on your bike before you know it!

Deena Z  Hi Sara, I had my mitral valve repaired at Mt. Sinai in NYC this past March. I did bring along a LONG cell phone charging chord, but found that my step-down unit had new beds with charging access right on the beds' frame. Either way, might be a good idea. I am probably in the minority and did not find a recliner more comfortable than the bed with lots of pillows. Without any doubt, make sure you have lots of pillows to adjust your positioning at home. You can also ask for additional pillows at Sinai.
I found my noise blocking headphones invaluable. There is constant noise at night, particularly on the step-down unit. I also listened to podcasts when I couldn't sleep well. Might want to download your favorite music or podcasts, so they are handy.
I didn't have much of an appetite the first three days post-surgery (sternum was cut). Your hemoglobin will be low, which adds greatly to your fatigue. My family purchased from near-by stores high protein shakes, which I just forced down me and gave me a ton of protein. You also might want to pack some high protein bars. Some warriors want to wear shorts or PJ bottoms for when you walk around the unit for exercise. I just added an additional gown on my backside, either way, you will want your backside covered!
At discharge, you will finally get a shower! I would not recommend Sinai's shampoo, etc., bring your own toiletries. I liked the Sinai bra that closed with velcro in the front, but it is pretty subjective. The bra will be tight the first two weeks, at least, because of swelling, so know they did not make a mistake in your fitting. The bras are fairly expensive ($50.) on amazon/company website, so I would take as many as you can with you home, IF you like the fit. When you get home, have a shower stool available. Showering, particularly washing your hair, is fatiguing. The simple plastic stools on Amazon work and cost about $30 or $40.
Most of all, bring with you a positive attitude and ask for anything you need, while in the hospital. Look forward to hearing about your experience and recovery!!

Richard Munson  Deena is correct, positive attitude is a biggie. Lets face it, there will be discomfort maybe even some pain along the way . I might be the biggest baby on earth and i got thru it. In the end, you did the right thing and life will be better in time. Only 7 months for me and it seems like a lifetime away. Hospitals offer great staff but heart recovery wings seem to be one of the best.

Mike Tirrell  Hi Sara, a couple thoughts. I would definitely support the notion of a long charger cord. That came in handy for sure. I also found that having my slippers was helpful along with the essential hygiene products (toothbrush, toothpaste, dental floss, etc) . Once I was in step down and the catheter was out, having my own boxer shorts and loose athletic shorts was a really nice luxury. As for a recliner, I ended up buying one rather that renting one. I found a fairly cheap one on Amazon (link below). I have napped in it but have found my bed to be usable so most of my sleeping has been in my bedroom. It is nice however to have a comfortable place to relax in my living room, especially for when people come over to visit or I just feel like relaxing but still being in "general population" rather than away from everyone in my room. Here is the link to the recliner I bought. Good Luck. https://www.amazon.com/gp/product/B094677HKM/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1

Amy K  Hi Sara,
I found that little things that bring comfort can make an outsized difference when you are in the hospital. The following things made a big difference for me:
1. My pillow from home.
2. Soft button front PJs and/or nightshirts (I stocked up at Target on soft knits) and cotton underwear.
3. My flannel robe from home, nice for walking the halls or using as a light cozy blanket.
4. Favorite lip gloss/chapstick.
5. Tweezers and small magnifying mirror.
6. Cleansing/moisturizing face wipes and facial moisturizer.
7. Wide toothed comb and hair ties for long hair.
8. Eva foam Birkenstocks (amazingly light weight). I used these for walking the halls and walking to the bathroom, as I didn't want to walk in my socks, then get back in bed.
9. I downloaded ebooks and podcasts that I knew would be simple and heartwarming.
10. Like others, I had an extra long iphone cord and airpods.
11. My amazing husband had the task of communicating with others. He had two different group text lists (our children, family, very best friends on one, and everyone else on the other). He was able to keep everyone informed to the appropriate degree.

I did use a recliner at home, as we were able to bring my Mom's electric recliner out of storage. It is nice to have somewhere to go besides bed.

I bought a padded backrest (Target) with arms that has been a nice support in bed.

It will be helpful to do what you can to have good functional strength, and balance going into surgery. I was grateful I could rely on my abs, quads, and glutes for getting in and out of bed, etc.

I hope you have a successful surgery, free of complications, followed by a comfortable recovery. Best wishes.

Ross F  I heard a lot of people benefit from recliner, and since I don't have it - i tried my luck to use my current bed as soon as I get discharged from surgery (Post OP day 5). My 1st night using my bed is ok, but did not really feel comfortable and my sleep was not too deep. 2nd day with the bed, i managed to sleep until now (Post OP Day 10). Good luck to you

Sara Latina  Thanks everyone for all the advice. it definitely helps! I checked out the recliner on Amazon Mike - I may actually do that. its not much more than what I'd pay to rent one for a few months. So many little things that I wouldn't have thought of like slippers and face wipes. really appreciate all of the input.

Rita Savelis  If you have small breasts you won't need a bra (and won't want to wear one). If you have large breasts you will probably need a surgical bra because the weight of your breasts will be pulling on the sides and this is hard on your incision. Men have it easier.
The most important thing I brought to hospital was an elastic to hold back my hair. I'm sorry that you have to go through this. No matter how much one prepares it's a singular experience and there are things that will surprise you and that you can't control. But you move forward one day at a time. Take care.

Rose Demske  My lips are always dry so I made sure I brought chapstick or another lip moisturizing stick. I did not use a bra until my incision was completely healed. I wore tank tops under my clothes. Guess it’s a personal choice …. It’s been 6 weeks and I’m just starting to wear my bra again.

Peter Linn  I have an office in NYC. I agree with Deena on the MC as a satisfactory hotel. Budget obviously matters. There are some nicer boutique hotels even closer but they will run you 50-100% more per night

Jay Heagerty  Congratulations Sara! I know it is a relief to have selected a surgeon you have a tremendous confidence in. Best wishes on your journey!

Kathleen F.  Dr. Stelzer is a wonderful human being. My Ross Procedure was great and I'm just as active as before surgery - I've been running, working out and healthy since my Ross Procedure in 2014, which I had when I was also 45. Reach out if you have any questions. I work in NYC and am happy to meet with you when you come in for surgery, or afterwards. My email is y2kfay@aol.com. I don't check this site often but am glad I saw your postings.

Jay Heagerty  Sara, I understand how you are feeling. I also have a bicuspid aortic valve and am scheduled for surgery on August 16th. I am still asymptomatic. However, you will find through educating yourself about your diagnosis and treatment options you will become more comfortable. Sounds like you are are the right track. Best of luck with your journey.

Rose Madura  Hi Sara and welcome. I knew from age 7 about needing surgery on my aortic valve. Imagine being told that knowing they didn't do OHS at the time. But 4 years ago, I found out it was time and it was scary. Do your due diligence and don't be afraid for a 2nd or 3rd opinion. You must feel comfortable with your cardiologist and with the surgeon. Let us know if you have questions.

Thomas LaCombe  Your story sounds very similar as I prepare for this too! I don’t know much but we are in this together!

Meredith Bray  Hi! I knew for about 10 years before, but my cardio thought it wouldn't be til I was in my 60s - I was 43! My symptoms really took a hard turn south about 6 months before surgery. I slept all the time and was still tired, couldn't climb a flight of stairs without resting, and seriosuly contemplated getting a handicap hanger for the car so I could park closer to the store. All that....and I still didn't realize how sick I was until I woke up from surgery. Glad you found this group!

Meredith
Clearwater, FL

Sara Latina  Thanks everyone! While this isnt the "club" anyone willing joins, it does feel good to know i'm not alone. So many of us have nearly the same story. Jay - good luck in your upcoming surgery. What surgical option did you go with?

Jay Heagerty  Sara, my surgery was postponed yesterday due to the covid spike. I am going to have aortic valve replacement and aortic replacement. I am leaning toward a tissue valve versus mechanical. I live an active life style and am not ready to commit to blood thinners for the rest of my life. I understand it is a personal decision and I feel this is right for me. Will keep you posted on new surgery date once I have one. Best of luck to you.