Nancy's Journal

Rob Sparling  Nancy, sorry to hear you are having some pain! Bummed for you! Hopefully it gets solved and things return to normal soon and smoothly!

Catie B  Nancy, I'm sorry you're having pain! Hope you feel much better soon. I had a pleural effusion that they drained in the hospital--the needle went in what felt like the lower back and I did experience some pain in that area for a few days. My effusions lingered several months, but my pain was earlier, in several directions with breathing in. Maybe up to the three or four week mark. I don't remember hurting after that.

Rose Madura  With my pleural effusion, I had coughing that would not stop. It was drained in hospital. Not sure if your pain is related. I'd check with your doctor.

Louanna Miller  I had pleural effusion and it was drained in the hospital before I could be discharged. Wasn’t getting adequate oxygen and was very light-headed. After it was drained I did experience some discomfort for about 2 weeks, but not since. I would also check with your surgeons office or cardiologist.

Meredith Geneja  I have a lot of pain, but pretty sure mine is from an over-enthusiastic high incline run on the treadmill. (that combined with moving a shelf in my office). Seeing a Dr. today just to make sure all is good. Hoping you get some answers. I am going to watch those inclines going forward:)

Jennifer McInerney  Congrats. Sounds like things are going well. I am one week post op. More tired than I thought I would be but otherwise slowly improving. Can’t wait for energy improvement

Dan Vechiola  Congrats on a great appointment Nancy! So ou nds loke you are doing very well. Keep grinding one day at a time.

Meredith Geneja  So happy & grateful to read your posts & know how well you are doing! Will be thinking of you Nancy, (& others), as we all continue down our recovery paths:)

Richard Buckley  Thank you for the good report. It will be a long night for your mom, but recovery is happening. Stay positive.

Dan Vechiola  Thank you for the update. Its geeat to hear that the surgery was a success. All downhill now. Our thoughts are with all of you at this difficult time.

Jennifer McInerney  Fabulous news. So glad you updated us. I’m doing a “happy” dance for Nancy and the family. Now on to a speedy recovery! God answers prayer.😀

Catie B  Hi Nancy. It's always daunting to hear there's another part involved. My surgery involved valve, root and aortic aneurysm. I was just looking at my surgical paperwork a couple hours ago. My total surgery lasted about 5.5 hours. No one ever broke down the timing further for me.
Very best to you!

Jennifer McInerney  Nancy, I’m thinking of you and keeping you in my prayers. This change in surgical plan is just a little hiccup. Your surgeon has done lots of these. Take care and God Bless

Thomas Brusstar  I had a mitral valve repair, and I was on the machine for about 90 minutes. Clamp time was 70, but it was another 20 before they were ready to take me off the pump. I know shorter is better, and there are studies that consider over 300 minutes bad, but I think 90 is fine.

Susan Lynn  I think i was also on the pump for 90 minutes for my mv repair. There have been great improvements in the heart lung machines over the years according to my cardiologist. It's not easy, but you have to trust your medical team. Hang in there.

Rob Sparling  Nancy, I am glad people here can be helpful and offer comparisons for you! I gotta believe your surgeon wouldn’t propose something that isn’t well within what is safely do-able. ❤️💪

Marie Myers  I had the valve, root, and ascending aneurysm resected. Try not to dwell on the details ,especially ones you really can't do anything about.
There is a point of information overload that just makes you anxious without really helping you. Hard to find that balance!

Meredith Geneja  Thinking of you, Nancy. No matter what, do your best to stay in that "happy place" in your mind. I go the day after you. We are in good hands, rest assured. Look forward to connecting with you soon:)

Tammy Pilcher  Hi Nancy, I had to have a root enlargement done for my new valve to fit properly, also. My surgery was 4 hours total. I'm not sure how long I was on the heart lung machine. I'm coming up on my 4th anniversary of my surgery and I'm doing great. You're going to do great, too! Psalms 28:7. God bless!

Louanna Miller  Take it one day at a time. Listen to your body and allow yourself to rest and relax. I’m one month post OHS for mitral valve repair. It has been tough, but there are better days. Take care of yourself.
If you have questions about recovery be sure to ask us here. I will share from my recovery experience.

Jennifer McInerney  I have heard front opening, no wires. I’m going looking this weekend. I’m generously endowed so I don’t think I can do without

Nancy Luth  I, too, am generously endowed and if left to their own devises my breasts could pop those sternum wires in, well, a heartbeat.

Jennifer John  Good question. I went without for several weeks. Then I found an oversized sports bra that zips in the front. It wasn’t perfect, but it gave me support.👍🏻

Doris Fowler  I wore knit sports bras for the first 2 weeks. Needed the support so there was no pull on the incision.

Julie Gerard  No underwire. Easy on. I had trouble (still do) with clothes rubbing against my incision/scar so I prefer a sports bra that has support, stretch, but doesn’t rub.

Nancy Luth  Thanks for the tips. There is a Harvard study that says women with large breasts are more likely to get incision infections because of the stress on the incision and recommends use of a bra.

Helen Daw  I was told at the hospital that I had to wear one. I had a loose cotton sports bra that I had bought from Walmart. It worked great.

Louanna Miller  I purchased several soft cup without underwire, front closure is easiest. I made sure they were not too tight around the rib cage.

When I was in the hospital after about day 4 they suggest I wear a bra and provided me with one. I am not overly endowed, but the RNs said any breast movement can pull on the incision causing discomfort. The bra provided by the hospital was: Surgi-Bra Therapeutic Breast Support. Made by Cardinal Health.

It is a soft cotton and easy to put on and has Velcro closure in the front.

Hope this helps.

Meredith Geneja  Thank you, Nancy, and each one for your responses. Have been thinking & "look-shopping" only so far. Comfort seems to be the key. Thanks again, one & all. Thinking I can modify or work with what I have. Grateful for the weight I have lost, should help.

Meredith Bray  I came home with a surgical bra. It had velcro in the front & back, and on each shoulder. I wore it for about 2 weeks post op but was most comfortable in a close fitting spandex cami/tank. Even today my regular bra still gives me irritations at the bottom of my breastbone (but apparently not bad enough to see a new bra style!)
-Meredith

Valerie Altman  I feel the same alot of the time. Sleep in late and could still sleep with no problems! On the up side..I do u enjoy a good nap

Jennifer McInerney  I feel exactly the same way. I’m exhausted most of the time now. I’m good until about lunchtime and useless the rest of the day. Having an afternoon nap is a given. I find it so frustrating. Quality of life is definitely suffering at this point.

Dan Vechiola  My surgery was this past Thursday, 09/06/18. I don't know exactly how long I was on the machine but here were the details of the calls from the operating room. My family received a call at 11:15 a.m. saying that they made the first cut. The surgeon called then at 1:15 stating the heart surgery was over and they were going to begin closing. They then received a call at 2:15 saying the close was complete and I would be in the iCU at 3:15.

Nancy Luth  Thanks for the information, Dan. i was told I would be on it for an hour and a half and that seemed long. They estimated the surgery at 4 hours.

Jennifer McInerney  My surgeon told me an hour and a half too. It doesn’t bear thinking about. I think I need another glass of wine - lol

Dan Vechiola  Yeah I think an hour and a half sounds about right. I still say to let go and focus on waking up and when you wake up you deal with what is next. Waking up is a great time because you know you made it.

Thomas Brusstar  For my open heart mitral valve repair, I was on the pump for about 90 minutes, I think just 70 of those with the aorta cross-clamped.

John Lant  I was on the Heart Lung Machine for 2 hours & 11min according to the surgical report. But I not only had my Aortic Valve Replaced, I also had my Mytral Valve repaired along with a double bypass.

Nancy Luth  Thanks John and Thomas for your posts. I’m feeling a little better about this whole thing- thanks to all those who have responded and given me insight into my surgery. This website is great resource. Thanks, Adam

Rita Savelis  The time is really going to vary amongst patients... My surgical report (just looked at it) says 183 minutes (but I had 2 valves replaced and a third valve repaired). It doesn't really bear thinking about too much. It's what it is. Let it go. I never asked about time, honestly. Breathe deeply. Relax. Take care.

Marie Myers  Like Rita says, the time will vary between patients , due to complexity of procedure and surgeon dexterity. I never asked how long I was on it. Not much you can do about it, really...

Jennifer McInerney  I can tell you fatigue was my first symptom. Then I had some chest pain with exertion, playing badminton, intense swimming. Elevated heart rate and short of breath when it was hot and let’s not forget random palpitations. I had AS for years. I have only had symptoms over the last few months.

Nancy Luth  Thanks Jennifer for answering my question. I didn’t know if I was experiencing real symptoms or just being s hypochondriac about things. But after reading your post, think I am having first symptoms. My stenosis went from moderate to severe/critical in a matter of months so I am still reeling about surgery scheduled for 9/26.

Meredith Bray  i found that hot & humid weather really wore me down quickly. I could walk the mall at a moderate pace for hours, but one walk across a hot parking lot and I needed to rest. I wasn't gasping for breath, just so tired. The last few months before my surgery I would have to nap during my lunch hour, and I would still get home and fall asleep in 10 minutes. A few times I dozed in my car in the driveway. You're not imagining things, and after surgery you'll look back and think, "Hey, I was really tired!"

-Meredith
Holiday, FL

Jennifer McInerney  I have to admit I didn't keep exercising once my symptoms started. To be truthful I was scared it might trigger chest pains. Dont think you are alone in feeling like a "hypochondriac". I felt exactly the same way and if you read my journal I think I actually mention it in there. I think mentally we want to be in denial about it all. If I can help by sharing my experiences so far, please dont hesitate to contact me

Meredith Bray  I felt terrific in the pool before surgery. I could stretch and swim...or just lay on a noodle and float. I wasn't and still am not an exerciser (not that I don't need to...). My Cardologist & Surgeon both suggest I remain as active as possible because the better I felt going in to surgery, the better I would feel after surgery. I did wear a heartrate monitor a few times just out of curiosity. And every time I felt uncomfortable and checked my heartrate, I was over 120. I still like to swim - it was one of hte activities I was really looking forward to resuming after surgery (have to wait for all the wounds to heal & scabs to fall off though, I think it was weeks for me.)
-Meredith

Dan Vechiola  Everyone is different and has different symptoms if any. My aortic stenosis was critical and I didn't feel anything and I walked 2 miles a day. I think we and our bodies make adjustments for the fall offs.

Mark Wilbur  Nancy, my symptoms are what you described, with the exception that I now feel increasingly out of breath. We live on a hillside and I am much more aware of my breathing when I walk outside, or when I climb the stairs indoors. No pain, but increased tiredness and usually a nap by later in the afternoon, regardless of how well I slept the night before. My cardiologist told me to keep my heart rate below a certain level. I wear a chest strap heart rate monitor for an accurate reading when I am exercising, including mowing the lawn, stopping occasionally when the rate gets too high. I used to say that I was asymptomatic, but I realize that the symptoms progressed so slowly that I wasn't aware of them until recently.

Barbara Cain  I had a weird sensation of cold water for lightly rippling across my chest. This happened twice. Both times I was in distress. Doc said he had never heard that one but it was REAL for me. Maybe the valve was quivering? Maybe because I’m older and heavier than normal?

Rich Hahn  I'm glad you asked that question. I am in the same boat. Most days I feel OK and have been cutting about 1 1/2 acre lawn with a push mower over 4 or 5 days. I notice my heart rate stays about 10-15 points higher than a few months ago and at least once a week I just want to sleep all day. My cardiologist just said come back in 6 months with no warnings or things to look out for. I think I will call Duke next week and see if I can get an appointment. I'm leaning toward having the replacement done as soon as possible rather than waiting until it is critical.

Nancy Luth  Rich, Please read all the way through Jennifer’s journals. She has been great about describing her symptoms in detail, including dizziness and the feeling she can’t take a deep breath. I have that feeling as well- as though all of my breaths are coming from high up in my chest. Anyway, I found the descriptions of symptoms in her journal entrees very helpful.

Marie Myers  Yes. I had my AVR, aortic root, and ascending aortic aneurysm resected at a local hospital. I was way too overwhelmed by the idea of travel. Also, I am a CRNA (nurse anesthetist), and have worked in OR's for 40+ years in my area. So I knew who to talk to to find out the track records of the local surgeons. I was also lucky enough to have worked with one of the anesthesiologists years ago, who happened to work at a local hospital with a cardiac surgeon with a good track record. So I met with 2 local cardiac surgeons at 2 different hospitals, and then made my decision to have surgery done locally. Believe me, I talked to the OR nurses, the recovery room nurses, doctors, even the nursing administrators to check out the abilities of the surgeon locally. I was satisfied that he had excellent training and skills.
So my bottom line is that are excellent doctors everywhere, you just have to find them!
The valve I got was an Edwards LifeScience 3300, which I think is the MagnaEase. I really don't know much about the Intuity or Inspirius. Every surgeon has their favorites, and not every valve is available at every hospital. So you have to ask all these questions in order to feel confident in your decision.
Wishing you a smooth ride through surgery and recovery!

Mark Wilbur  Welcome to the community, Nancy. Like you, I was diagnosed with aortic stenosis two years ago and was referred to a cardiologist who did his fellowship year at Mt. Sinai Hospital in New York four years ago, before moving here to Oregon. At our last meeting, I asked him to compare the doctors and regional hospital that does cardiac surgery in our area to Mt. Sinai. He said that for a common procedure as heart valve replacement, the regional hospital and the doctors to whom he refers patients do as good a job as the major hospitals and that I can have confidence them. After that, I stopped wondering about all of the other options, although I had spent countless hours researching them. For us, traveling only 75 miles, rather than hundreds, for heart surgery is a relief, as well. Whatever your decision, you need to have that sense of confidence in the doctors and hospital that you choose. I haven't been referred for surgery yet, so I can't comment on valve selection. I wish you well on your journey. You came to the right place for information, opinions and support!

Nancy Luth  Thanks for your posts. My surgery is scheduled to be performed at Sacred Heart Medical Center in Spokane, Wa. at the end of the month.

Lisa McLaughlin  Welcome Nancy! My surgery was at a local hospital and I was very happy with the my choice of surgeon and hospitals. I researched and met with 2 surgeons at 2 local hospitals. Fortunately I didn't have any other issues, just severe and asymptomatic aortic stenosis. I got an Edwards Magna Ease valve. The Inspiris Resilia wasn't available yet in January.