Going for Ross 9/19...hoping for shared experiences

[lichelle]

Hello all! Well my day is just around the corner and I have some questions that I am hoping anyone who has had a Ross Procedure or similar could share their experiences with me.

#1 I am a woman and strange as this may sound, have any women who've had OHS out there ended up with lop sided breasts? Funny thing is the thought of the scar sounds kind of like something to be proud of, like a battle scar, however lop sided breasts...well I just can't deal with that!
#2 I have not received any post-op instructions, as I am still pre-op (ha, ha!), but am wondering if anyone who has had a Ross has needed anticoagulation short-term post-op? And what type of meds were you on for say, the first year post-op?
#3 A slight confession and question combined...I have just quit smoking 3+ months ago, and am thin, but have never really been into "exercise" per se. I am 29 years old with some left ventricular dilation, mild ascending aorta dilation, mod aortic regurge, and stenosis. I am very active, as I am a nurse, just not athletic. I should add I do enjoy a cocktail on the weekends. And I on occassion have a cup of coffee once-twice a week. I am curious how long it took anyone else in a so-so physical condition with similar lifestyle habits recoop? I know part of the reason I've never been "into" athletics/exercise is partly because my BAVD...I'm so damned tired all the time! I just wonder if I am going to bounce back or not.
#4 With the BAVD I have such ANNOYING heart stuff and am wondering if anyone else with the BAVD has had similar symptoms and if they went away after Ross Procedure. I can feel my heart beating ALL the time. Sometimes, my neck/head feel full of blood, kind of like there is too much blood in them. In the last month I've been having some orthopnea, where my chest feels like someone is pressing on it, and my head and neck are SO entirely TOO full of blood (like distended) when I first lay down at night (I sit up for first few hours of sleep and then am alright). I also have an irregular pulse, about 5 skipped beats a minute, all related to my respiratory cycle. And finally, palpitations...big old swooshes in my heart a few times a day for a varied length of time.
#5 I am wondering how long anyone has needed cardiac rehab, and how long you were off work.
#6 How much help did any of you need post-op and for how long? My aunt, who is a retired nurse, is to stay with me for the first week during the day when my boyfriend is at work. Then he is to take care of me in the evening and at night. I should add that I have a 4 yr old daughter who needs looking after, so I am wondering how soon anyone was back to mommy/daddy duties post-op?

Thanks a bunch for any stories and perspectives!

 

[lopearredlady]

Lichelle,
I am two months post Ross and hopefully can calm some of your fears:
#1 Lopsided breasts---too funny---I worried about that pre-surgery, also, but I am pleased to report mine are now perfectly even.
#2 I did not have to go on any anticoags.; just take half of a pill of blood pressure medicine daily (to keep it the pressure low on the pulmonary valve which has to adjust to the higher pressure of the aortic blood flow volume)
My surgeon wants my systolic blood pressure to be no higher than 110.
#3 I had the pressure feeling on my chest prior to surgery and a little shortness of breath.
#4 I started cardio rehab after 3 weeks of recovery, but was walking one mile daily much sooner. The walking really helps your recovery. Get yourself some music and it will be o.k. I went back to work at 5 weeks, but I advise taking it slow if you have a high pressure job like mine. Sometimes you just stop and say "I can't believe I just had open heart surgery!" and give yourself a reality check. You will be amazed at how much new energy you will have and that pressure will be gone.
I will send you this and look back to see your other questions! I hope this helps!

 

[lopearredlady]

Lichelle,
I am still in cardio rehab. They give you 12 weeks. I am now at 6 weeks of cr. I could stop, I suppose, but I really enjoy the people and it helps me remain very consistent and disciplined with the exercise. Most importantly, it helps you maintain your blood pressure as they monitor you the entire time and make sure it goes down prior to your leaving. Also, it makes me leave work and take a break, if you are somewhat of a "work-aholic" like me.
You will be so relieved to have your surgery behind you. This site is a gift.
Please feel free to ask me any more questions. I, like you, had many, and there are so many knowledgeable "friends" on this site to help you.
Terry

 

[Karlynn]

Well, I'm not a "Ross-er" and my issue is mitral. But I can tell you that my breasts are no more lopsided than they wer prior to the surgery.

I wish you the very best procedure on the 19th!

 

[sylviayasgur]

hi lichelle,
can't help in the breast dept, as my husband is the patient here.
i do remember joey taking coumadin for about 2 weeks post op, just as a precaution. i hear they often do this although i see not all docs do it.

as far as meds go, joey had hoped to be taking no meds after his surgery, but because he had afib issues (pre and post surgery) he was put on amiodarone (his past meds did not do the trick). he still takes a small dose of amiodarone and he takes a baby aspirin[ also niacin, omega 3 (both for high cholesterol)]. when he first came home he took cardizem,lasik,and a number of others, but this was temporary.

he's happy with the way things are and has no complaints. he was in great shape before and is in even better shape now. i think once your surgery is behind you and you go to cardio rehab, they will monitor you and teach you about slowly introducing fitness into your regimen.

hope this helped. feel free to pm or email me anytime.
be well,
sylvia

 

[lichelle]

Thanks and keep it comin'

Thanks and keep it comin'

Thank you so much for all the input! Anyone else out there with some perspectives/experiences, it would be much appreciated as well.

I am VERY pleased to know, neither of you ladies ended up with lopsided breasts! It is also good to know that there shouldn't be too many meds post-op long term!

Also its good to know I am not the only person who has had all the strange heart/chest sensations! I am really hoping it goes away and that I do get some energy back.

 

[dcpickle]

#1 No breast problems here (ahem) However I do have this big lump near the bottom of my incision. Several doctors didn't know what to make of it, but my latest cardio thinks it is some sort of hernia. He said not to mess with it unless it becomes a problem because it's extremely hard to fix.
#2 No anticoag meds, ever. Tylenol for swelling, which was insufficient and I had to twice go on a regimen of steriods for swelling around the heart. Stay away from those steroids if possible. I just had to take blood pressure meds, which I'm still on.
#3 I was 41, in so-so shape, and ended up not doing cardio rehab. I felt like my recovery was about as fast as I expected. I was back to work in 6 weeks, though not completely recovered for some time after that. At age 29, I don't imagine you'll have any problems.
#4, your descriptions sound remarkably similar to what I was feeling before surgery, and yes, they have gone away. I was also having noticable chest pain on exertion, which is all gone now. All in all, I feel great. My chest is actually still a little sore, though. I guess that will be forever. No problem.
#5 no rehab, 6 weeks (back to desk job. No heavy lifting. Opening heavy doors was still difficult at this stage.) You didn't ask, but I didn't drive till I went back to work. twisting around was too difficult.
#6 I needed tremendous care for a week, then a little less. I'd think you'd want someone with you all the time for more than a week. You're not gonna feel like mommy duties for several weeks. Everyone is different, but you'll get tired easily and must take naps alot. Pushing yourself too hard could set you back. BTW don't hold a baby for quite awhile. They'll throw their head back into your chest and you'll be flat on the floor from pain! Also, get a pillow to hold if you cough or (may God forbid) sneeze!

Best of luck with your Ross. I'm happy with mine. Let everyone here know how you're doing.

David

 

[dj/utvolsfan]

Hello all! Well my day is just around the corner and I have some questions that I am hoping anyone who has had a Ross Procedure or similar could share their experiences with me.

#1 I am a woman and strange as this may sound, have any women who've had OHS out there ended up with lop sided breasts? Funny thing is the thought of the scar sounds kind of like something to be proud of, like a battle scar, however lop sided breasts...well I just can't deal with that!
#2 I have not received any post-op instructions, as I am still pre-op (ha, ha!), but am wondering if anyone who has had a Ross has needed anticoagulation short-term post-op? And what type of meds were you on for say, the first year post-op?
#3 A slight confession and question combined...I have just quit smoking 3+ months ago, and am thin, but have never really been into "exercise" per se. I am 29 years old with some left ventricular dilation, mild ascending aorta dilation, mod aortic regurge, and stenosis. I am very active, as I am a nurse, just not athletic. I should add I do enjoy a cocktail on the weekends. And I on occassion have a cup of coffee once-twice a week. I am curious how long it took anyone else in a so-so physical condition with similar lifestyle habits recoop? I know part of the reason I've never been "into" athletics/exercise is partly because my BAVD...I'm so damned tired all the time! I just wonder if I am going to bounce back or not.
#4 With the BAVD I have such ANNOYING heart stuff and am wondering if anyone else with the BAVD has had similar symptoms and if they went away after Ross Procedure. I can feel my heart beating ALL the time. Sometimes, my neck/head feel full of blood, kind of like there is too much blood in them. In the last month I've been having some orthopnea, where my chest feels like someone is pressing on it, and my head and neck are SO entirely TOO full of blood (like distended) when I first lay down at night (I sit up for first few hours of sleep and then am alright). I also have an irregular pulse, about 5 skipped beats a minute, all related to my respiratory cycle. And finally, palpitations...big old swooshes in my heart a few times a day for a varied length of time.
#5 I am wondering how long anyone has needed cardiac rehab, and how long you were off work.
#6 How much help did any of you need post-op and for how long? My aunt, who is a retired nurse, is to stay with me for the first week during the day when my boyfriend is at work. Then he is to take care of me in the evening and at night. I should add that I have a 4 yr old daughter who needs looking after, so I am wondering how soon anyone was back to mommy/daddy duties post-op?

Thanks a bunch for any stories and perspectives!

Hey there,
I hope I can help a little bit....although I didn't have a Ross procedure and only had a few other little things done over all during OHS.
#1 About our breasts..... You're right - the zipper you WILL carry with you as your own special badge of courage. My surgeon did a great job of lining my incision right around the roundness of my right breast so it just disappears into the natural line there. They aren't huge so there is a little line above and below my breasts. Kind of melts into the cleaveage look over all at the top. No lop-sided breasts for me! Bet you will be fine.
#3 You will bounce back regardless of your pre-op physical fitness level. I was always physically active all throughout my life...tennis, gymnastics, biking, aerobics, you name it. Then when my regurg and stenosis became so bad that I could hardly lay down in bed without my heart pounding out of my chest, my activity level came to a screeching halt and was scared to death how in the world post-op would be like for me. Felt rotten like that for at lesat 1 to 2 years before surgery. Even being diagnosed with Lymphoma this summer, I am still very, very happy to report that my energy level is so much better than it was pre-op. .... I just need a few days of recovery from chemo to get to full throttle again. Over all though, happy with my energy level.
#5 I wasn't approved for cardiac rehab due to lack of blockages, etc. Was supposed to go back to teaching mid-May, but due to pleural effusions post-op, did not report back at all last year. Felt really good 7 weeks out.
#6 I was doing laundry the day after I came home from Cleveland Clinic and yes I was reprimanded by fellow vr.comers. I drove at 2+ weeks. Opps, another confession. It is hard to be single, independent, kids in college, friends working, family out of state....you get the picture.......and allow yourself the amount of pampering and comfort you really truely need following post-op. Bless your aunt and boyfriend. You will need them. I knew my daughters only had so much time to give me, so I am sure I pushed myself....big time....into full recovery. I only really needed my daughters my first night back and a little on the second and third days to take care of doxie. You, on the other hand, allow yourself to be taken care of by the best of hands.
I wish you the best of times crossing the mountain. The anticipation is honestly the worst part of it all. You'll get through it and we'll be here when you have questions. Look forward to feeling better!
Debbi