Molly's Journal

Rob Sparling  Molly, keep bouncing, jabbing and dancing, Knock down any and all obstacles! Proud of you and your determination.

Fay Kozas  Congratulations on completing your cardiac rehab! You have been through a traumatic experience. Open heart surgery is a shock to the body, the heart, and the brain. If it is not a pathological reason, it may resolve itself. Keep us posted.

John Isham  Molly.......I have had “ocular auras” (without the migraine) for about 9 years now. The actual episode lasts exactly 20 minutes and it is triggered by light or sensitivity to light (either sunlight or artificial light). You get visual zigzags or floaters or disturbances that effect your vision for about 20 minutes and then you either get a headache or not....in my case...rarely a headache.
Several years ago I went to a couple of Neurologists, a couple of Eye Doctors and none of them could tell me WHY I get these and they all said they were harmless and are considered a form of migraines. Prior to my AVR surgery on 1/15/2019...I was rarely getting the Ocular Auras.....maybe one episode every 3 months or so. Three days after my AVR Surgery I had an episode and have had perhaps 3-4 episodes since. Again...my episodes last 20 minutes and I have no headache after the episode! These are harmless and again are a form of migraines. I am sure all the crazy anesthesia and drugs we were getting in the hospital were probably initiating OR triggering these ocular auras. My episodes have actually decreased in the past 2 weeks and am optimistic they will totally go away. I would not worry too much about this....if you have had them before you most likely will still get them and they will get more infrequent with time...agin they are harmless!

Molly Ivers  Thanks for all your thoughts. This has really been bothering me. The episode was so weird and dream like. I have had the type of scintillation migraines John describes most of my life, but I do not ever remember having one like I experienced over the weekend. Crossing my fingers that there is no damage to me eye and will let everyone know what the optho says. And I really miss my exercise class! I signed up for the next phase, but have been run down with a bad head cold.

Rob Sparling  Good to hear from you, Molly. Glad you are getting into a groove such that logging in is less frequent. Me too, frankly. Keep listening to your body and stay curious. Push through it. Press on, just press on! Hopefully it will sort itself out or you have a discovery that helps crack the code.

Steven Liebowitz  Molly, thanks for your posts. I too had the occular migraines without the pain,,,several times a year. Had my OHS 5 months ago, and suffer from the shooting stars every day. Maybe enhanced by the metoprolol?? Wishing you a continued healthy recovery!

Judy S  I know it’s been rough with the added stress of finances on top of everything else. You might check with the rehab staff to see if anyone does any rehab work or personal training on the side. They could maybe periodically work with you on a plan. I found that the exercise physiologists at my hospital did work on their own too. There might be some community classes that could help as well. Hope you can find some additional support.

Marie Myers  I decided to keep up my own rehab. I bike for 15-20 minutes per day, and then do a brisk walk for another 15-20 minutes. Finding a fitness center can also provide an indoor venue if your weather is too cold. Our local LAFitness offers $25/ month special promotions, giving access to all machines and classes. Good luck!

Barbara Wood  Hi Molly, I had a high copay too, though not as high as yours. I went to the traditional cardiac rehab with the ekg leads for 3 weeks, had no problems, then, with my docs approval, moved into a supervised cardio program at the same hospital with the same nurses. I didn't wear the monitor, but we kept track of our progress & had some heart rate, blood pressure monitoring. That program was only $50/ mo I did that for 5-6 weeks then moved on to a regular gym- that worked well for me. The supervision & monitoring give you a lot of security & confidence, pretty crucial after ohs!

Louanna Miller  My insurance only covered $800 of $2805 for my first month of cardiac rehab. I just received the bill, and will have another one coming for my December rehab that I completed.

Molly Ivers  Thanks everyone! I told CR about the changes coming in January and they said they will try to keep me in at a reduced rate if possible. There were some bumps in the road early on such as not being able to start when I was supposed to because my insurance is slow and then I was taken off Lopressor after I started CR so it threw all of their baselines off. I'm happy they will work with me and I may have to jump to the $50/month program Barbara mentioned. I do walk everyday on my own and started looking at a hybrid elliptical for home use - I found one for about $400 which I can save for when I want to stop going to the facility. Although they say I am ready to stop using the EKG wires I feel nervous, but what bothers me the most is how long it takes my heart rate to return to normal post exercise.

Molly Ivers  Thanks everyone! I am enjoying working out too. Today I went a little overboard and the CR minders became very concerned about my heart rate being kind of high. It seems like now that I am off the BP med my heart rate is naturally higher - did that happen to anyone else?

  Yes Molly I too have been dealing with vision problems (blurry, distorted) and lightheadedness since my mitral valve repair surgery three weeks ago tomorrow.
Had multiple tests to rule out lots of stuff.
For me I think it's my body fighting to regroup after such a hard trauma being done to it like open heart surgery.
Good idea to contact your doctor though. Better to be safe than sorry.

Lisa Guinan  I also get a little dizzy if I look straight down. I notice it mostly when I look at my incision. I also had an episode of double vision once when I got off the treadmill. My cardiologist said it’s all normal. I’m battling a cold now which is giving me sinus issues and nausea. I see my surgeon tomorrow for my first follow up.

Molly Ivers  Thanks Jeremiah and Lisa for your answers. It's reassuring to know we are all in this together in a way. I know the surgeon told me it may take up to 5 months for vision problems to totally subside. In the hospital I had constant headaches (migraines and ocular ones called scintillation). I repeatedly asked to see an eye doctor before I left the hospital, but they just kept saying to wait a few months. So here I am 6 weeks out and still having an occasional scintillation headache and some vertigo, but vertigo followed by double vision just freaked me out. I am pretty shocked that they don't tell you about these things before surgery.

Dan Vechiola  Hi Molly! I am also one of the youngest in my cardiac rehab class so don't feel bad. Its time to make lemonade of the lemons we have. The hospital I attend for cardiac rehab has a 6:30 a.m. class and is a pretty popular one. My insurance is currently getting billed $250 a class. It sucks to have expenses that carry over to the new year but look at it as a new year, a new life and a new you! As far as sleeping in a recliner, I found getting back in bed and getting back to normalcy increased my mental state and recovery. Don't let the negativity get you. You got this and you are part of this big family and we will all do this together.

Lisa Guinan  i haven’t started rehab yet but am guessing I’ll also be the youngest. Don’t let it bother you. You’ll probably be the star student since you’re younger. I’m doing rehab at a different hospital from where I had surgery. Mine will be at a small hospital that’s closer to home. Hope you get everything worked out.

Judy S  Hi Molly, I was hoping to be the youngest in my rehab so I am jealous of your situation. It could be great to help you focus on your individual recovery rather than compare yourself to others. I hear you about the working, and I don’t know of there is any way you can work from home on the days you go. That’s how I’m handling it and I’m about 50% of the way through. I’m finding it a great luxury to do this rehab—which I could never have imagined saying before—because it really does help your recovery and it likely will help with depression. One thought is maybe you do the first 12 sessions which is when they were monitoring me with a heart monitor and then create an exercise program based on what you learned and do it on your schedule. Hang in there!

Jennifer John  Molly, pls stick with cardiac rehab. It will help your mind, body and soul. See some of my recent Journal postings, including one on cardiac depression. Might help you get your head around all of this post-op stuff.❤️💪🏼

Dan Baltazor  Sorry you're feeling down Molly. I think that is part of this recovery and some days are harder than others. Money woes definitely don't help. I'm also the youngest in Rehab. They started me early. I'm almost 3 weeks post op and I'm already starting.. I can already tell it's going to be a big benefit mentally and physically and getting back to life as it was. Hang in there. It's an investment to yourself.

Molly Ivers  Thanks everyone! I want to go and I really want to work out again. I hope I can find a time slot that works for me. My insurance had a hold up and I am not allowed to start yet. My job is actually very understanding about my situation.

Dan, I could NEVER make the 6:30 am class! At my hospital the earliest is 7:30 am and I still couldn't make that class since I am a but of a night owl:)

Judy S  You’re lucky Dan that you have a 6:30 am option. my earliest choice is 8 am and my latest is 2:45 in the afternoon. Not too helpful for working. It’s interesting to hear how different these programs are.

Dan Baltazor  I know Rob Sparling got the Fitbit Charge 3 and I believe he likes it. I was gifted the same thing when I got home from the hospital. I really like it for steps and heart rate. I did have a little episode last night with my heart rate exelerating for a brief period and was disappointed that the Fitbit didn’t pick that up though. Happy Thanksgiving!

Wanda Mroz  I have a Fitbit Alta with heart rate monitor. I love it. Keeps track of my steps, exercise, sleep and heart rate. I can tell you that my Fitbit (I’ve upgraded twice now) helped me catch my a flutter issue the very first time it happened. I wear mine to sleep, and when I checked my sleep pattern in the morning and then my heart rate, I noticed it running in the 80s while asleep which was considerably higher than the 50s 60s after surgery. At first I thought it was a fluke, but when I called my cardiologist who had me come in for an ekg, she confirmed a flutter. That was a year and a half ago, and I’ve since caught it two more times. It can register a high rate when you move your arm a lot simply from movement, but it’s priceless to me to have it all the time. I’m even thinking of upgrading again. You can get a very good deal now at Christmas as well.

Wanda Mroz  To Dan, it can take a few moments to catch and read a higher rate. If it’s really high, it will register if the episode is not too brief. It has to decipher the sudden change. If it’s too brief, it may not catch it. It’s caught mine but they were not brief.

Mark Wilbur  For an accurate heart rate reading, I suggest an actual HR monitor that uses a chest strap sensor. I use one during exercise and strenuous activities like lawn mowing. I have had a Fitbit Charge 2 for 1 1/2 years and wear it 24/7. I learned very soon that the heart rate reading can be off by a significant amount, sometimes as much as 20 -25 bpm, although it is pretty accurate for normal activities. Also, steps are calculated by the movement of the arm which means if you hang on to a grocery cart as you move around the supermarket, it won't record your steps -- or, it can falsely record steps when you move your arm quickly. I trimmed out a dead flower bed by using a manual hedge cutter -- the Fitbit recorded over 12,000 "steps" that day, when I actually walked around 5,000! So, keep in mind that the Fitbit can tell you only part of the story.

Rob Sparling  Dan B. Is correct. I like my Charge 3. It seems to have a heart rate that is a bit high compared to my cardiac rehab machines (maybe 3-5 bpm?) but it seems to track my blood pressure cuff and app. It did glitch out on me this week when I went to sleep after midnight (it tracks your sleep) and I have not had a problem other than that. I find it to be really comfortable. And wear it 100% of the time (except showering). I recommend.

Molly Ivers  Thanks everyone, I picked up the Charge 3 on sale yesterday. Right now I am interested in keeping track of my steps. In the future I may be interested in using the HR feature. In the past I wore I chest strap HR monitor when I was a gym bunny and had to stop when I developed severe anxiety. So it may take some confidence to use the HR feature. The guy at the store said I can turn off the HR reading so I don't see it, but it will be recorded anyway.

Judy S  I did have dry, flaky skin afterwards that I wondered if it was caused by the iodine or what they put on to avoid bacteria. I did use some regular lotion well away from the incision site and it went away.

Molly Ivers  A friend who is an occupational therapist told me it's a normal part of the healing process. But I can't help but think I had a reaction to the mild soap or something else.

Tracy Fallu  At night, my husband helped me make a stable, cozy, slanted stack of 2-3 pillows. I also used the wedge under my legs that was provided by the hospital. For several weeks, my internal clock was off- I didn’t fight sleep during the day which meant there were times on was awake at night for time periods or vice verse.

Wanda Mroz  Nothing with perfumes or scented. I used Aveeno Fragrance free and it worked quite well. Also I used about three pillows and propped myself up in bed almost in a sitting position. Couldn’t lay flat for awhile. Grab sleep when you can if you don’t sleep too soundly. I didn’t either but then I’m a light sleeper anyway. Things will get better... some days will be better than others. Give it time. 💞🤗🙏🏻

Rita Savelis  Alas, sleeping is hard and will be up and down for a few weeks. Take naps when you can. Glad to hear your scar is easy to look at (I avoided mirrors for awhile). Staying out of the sun for a year is one of the best things you can do to insure that your scar tone will eventually match the rest of your skin and be barely visible. As far as creams go, anything gentle and scent free is good. Take care.

Dan Vechiola  I hated sleeping in a recliner. I used a wedge pillow which allowed me to sleep in my bed. Getting back normalcy in your life really helps the recovery process.

Molly Ivers  Thanks everyone! I really don't know what I would do without this group. My incision is really tender and hurts. I have very sensitive skin that over reacts to just about everything. And just so everyone understands, I want to put the cream on other parts of my skin that are very dry -- not directly on the incision.

My bed is low -- mattress/boxsprings on the floor, but I will look into buying a wedge.

Noreen Kitchen  I am also sensitive to lots of different creams so I used vitamin E oil and first and now use coconut oil. My scar can be tender and itchy even after all this time and the coconut oil really helps.
I had lots of trouble sleeping the first few weeks home and really stressed about it until my mom said to just sleep when I was tired and not worry about what time of day it was. Once I finally got some good rest I was able to get myself back on schedule for sleeping at night.

Susan Lynn  Molly - It doesn't matter where you're walking as long as you're doing it. I think 20 minutes is absolutely awesome!
The lightheartedness could be your medication or fluctuating blood pressure. If you're concerned, call your cardiologist - they'll be able to help you. Make sure you stay hydrated, too! Continued success! ❤

Molly Ivers  SNOW! Yes, it may be here tomorrow. Just an inch, but it will happen. I hope ice can hold off for a few weeks.

Rob Sparling  Walk walk walk. Way to go! My instructions were for small doses of walking but multiple times. It wasn’t until the third week I was doing 20 minute walks and one time I got to minute 19 and was darn glad I was at the end of my driveway! The time walking was what I measured, not the distance or the pace. But it all adds up, and quickly! Congrats!

Bradley Dunn  I don't think this question has an answer. Everyone is different. I had almost no pain at all and no incision pain ever.

Molly Ivers  I get the feeling there might be some male/female chest pain difference. If one had a fuller bosom the weight might be pulling on the incision area? Just a hunch.

Lisa Ferguson  You are still really fresh, but I hope you get answers about what you are feeling inside. The scratching from inside is not something I remember, but I do think the fuller bust weight is a factor. I did not realize how important good support was needed after surgery, even for sleeping! And was impossible to move my arms to even put a bra on without a lot of pain. I wish I had figured that out before surgery! My advise is to ask to see your chest x-rays. They would have done one in the hospital to check things out before you left. At least you can see how your chest was closed up and be reassured they didn't leave a wad of aluminum foil in there ;)

Dan Vechiola  I didn't have any pain on the incision but my chest muscles were painful and sensitive for about 5 weeks. It was kind of like a nerve pain. I chalked it up to being part of the healing process which it was. I purchased the incision shield which helped a lot especially while walking. It takes 6-8 weeks for a bone to heal and that was right on for me. At 6 weeks the pain and sensitivity was all gone.

Barbara Wood  I didn't have what I'd describe as actual pain, but I had a scratchy, pins & needles sensation on/ in my upper chest, especially sensitive when clothing touched it. It took a few months for that to completely go away.

Willie Radl  I had some itching feeling like that and some general ribcage pain. My doc told me it's likely all tissue healing, the bone takes a while to heal, I thought the standard of 4-5 weeks to drive and 3 months to feel basically normal again was pretty close. I'm 8 mo out now and my sternum feels normal again. I did give it a few months before getting too concerned, unless the pain is really bothering you.

Tracy Fallu  I learned pain during recovery is up and down. Make sure to stay ahead of it with the medicine regime your doctor provided. Make sure to rest, rest, and more rest. Your body has experienced major surgery and appreciates all the rest you give. Great idea to talk with your surgeon about the “wad” you are feeling. It’s possible it is part of your body’s natural inflammation from surgery and settling that happens.

Rob Sparling  Record breaking amount of absentee ballots cast in Texas and Florida. On the road back from Cleveland hoping/pushing to get home prior to the polls closing.

Jennifer McInerney  My pain has been very little but certain movements increase it. I take extra strength Tylenol as required but it’s only a few times per week that I do that. I get in and out of bed pretty slowly and I find stretching/reaching causes me some discomfort. Sitting or lying in one position for too long is a definite no no. My only discomfort (I can’t honestly call it pain) is my sternum. Looking forward to it being healed. I would suggest if your pain isn’t decreasing, give the Surgeon a call.

Molly Ivers  Thanks Jennifer and Mary K, my pain IS decreasing, but my sternum hurts a lot. I am trying to figure out which pain meds bring the greatest relief and which make me sleepy (can save those for night time). My skin is super sensitive so I have a lot of discomfort and itching. My sternum bump was soooo big! Not sure if they all are like that. Today I plan on leaving my home and take a walk in the neighborhood for the first time. I will be curious as to how much I can walk before I start getting out of breath.

Tracy Fallu  It looks like you were discharged yesterday, welcome home. The best advice my medical team and home health care nurse provided is right now, it’s impt to keep up on pain meds, stay ahead of the pain. Even if you are not feeling pain at the next dosage, take it. Soo important as it helps your body recover, helps reduce swelling and yes, they will make you sleepy; but that’s good, sleep. Enjoy your comfy space, rest and give your body grace.

Meredith Bray  Here's a copy & paste from my journal, Back & shoulder pain can stall your recovery and wreak havoc on your emotions,

"I'd like to share with you the BEST advice I received after I came home from the hospital. I was fortunate to have not only a visiting nurse, but also a visiting physical therapist. He came by twice my first week home to make sure I could take care of myself. The first question he asked me was, "Do you h ave back pain?"

WELL YEAH, I HAVE BACK PAIN!

Well, I didn't actually yell at him, but I felt like it. The constant ache was really grinding me down, preventing rest and also movement. The therapist told me one thing to do that made a difference immediately:

"Stand up straight."

And he didn't mean stand up straight like your mother's always bothering you to do: He meant stand up straight as if you were President or King or Supreme Leader or whatever your fancy.Instantly I was in less pain. He explained that heart surgery patients have the natural tendency to curl forward, hunch over, to protect our chests. And that unbalances our core muscles that support the upper body.

So stand up as straight as you can when you're up and about, and walking around. It'll probably feel unnatural for a whole, but it will also help alleviate some of that nagging back pain.

Here's the second most useful advice: Support your head and neck while resting! Our heads are heavy. Like, bowling ball heavy. And the muscles that support your head stretch a good 8-10" down your back. Even when you're resting, you're still expending energy holding your head up. Use that energy for healing instead by using a travel pillow to support your head and neck while you're resting/reclining/sitting on the couch staring at the wall at 4AM because you've already slept for 3 hours and now you can't sleep anymore.

I found that I wasn't sleeping well at all, because I was afraid I would move around in my sleep and un-do what the surgeon glued together. Once I found enough pillows to put under my neck, my arms (to get my arm-weight off my upper body), and some under my knees, I found I could relax a little more each time I fell asleep. (I was still only sleeping in 3-4 hour increments, but it was GOOD sleep!)"

TL:DR - stand up straight, use your core muscles, get a neck pillow

Hope this helps someone!

Rob Sparling  Molly, what Jennifer decribes above is very similar to what I experienced. Once home, I took Oxy at bed time and paired that with a long, comfy shower and hit the rack around 7:30p. I slept well and pain free. After a few (several?) days, I discontinued the Oxy and used only Tylenol. I never finished either prescription. Then “discomfort” was directly linked only to my movements I made, like twisting your torso or laying on the incision. Now, almost 6 weeks post-op, no pain or reminders other than the zipper on my chest A wll earned reminder, right? Stay ahead of the pain and take what you need on a regular cadence. Dial it down later. You should talk to a nurse or your surgeon if you aren’t getting resolution.

Rita Savelis  Oh, gosh. Molly. You did not need to get that info straight after OHS. I feel for you. It's such an emotional time. I just wanted everything to be fixed and be back to some kind of normal. Which took so much longer than i expected. The tiredness is common. Your body's been through a lot.

Catie B  The timing of that news was very difficult. I'm so, so sorry you couldn't have known about it sooner. And sorry about the scare from the lab error. Much more stress than you needed. I hope your recovery will go smoothly from here out.

Marie Myers  I know that news was hard to hear. Here is hoping that the aorta does not continue to enlarge. Do they have you on beta blockers?

Molly Ivers  Thanks everyone! Marie, no I am not on beta blockers. Would that keep my aorta from growing? They really think it grew because of my bad valve which makes sense.

Marie Myers  Sometimes they put you on beta blockers to keep your heart rate and BP down a bit to discourage aortic enlargement . You could ask your cardiologist/surgeon about it. Did they say how enlarged it is ?

Dan Vechiola  Welcome to the other side Molly. Take it one day at a time and you will see how fast time will fly on the recovery side.

Steve Farthing  TIP - If you have a visitor who can get some food from the hospital restaurant/cafeteria, you can bypass food service rules.

Rob Sparling  Awesome, Molly! Sounds like you are doing pretty well. Complaints are food and irritation from the tape! Solid! Has the a-fib cleared up? I hope so. Keep pushing ahead! ❤️💪

Judy S  Congrats Molly! Glad your wait is over. I also had Afib in the hospital. It appeared twice and each time folks came running while I felt nothing! Happy for your leaps and bounds!

Marie Myers  Hope your eye is doing better. It is possible to get a corneal abrasion while under anesthesia. Have they arranged for an ophthalmology consult while you are in the hospital? Also, hope your skin irritation from the tape is subsiding. Unfortunately, there is a lot of tape involved in the anesthetic process.
Glad to hear you are on the recovery side!

Paul Howarth  hope you have another great day today Molly! almost time to go home? Seems like that is your next big goal. thinking positive thoughts your way.

Molly Ivers  Me thinks I am going home today! Was never seen by an ophthalmologist - they just keep saying "these things will subside." And my eye is much better! Today I keep taking more tests, new baseline echo, x-rays, blood work, etc and getting visits evaluating me to be discharged. Fingers crossed. Want ti go home.

Marie Myers  If something happens to the OR schedule, there is always a chance you can go earlier.
You can call the surgeons office and see if they agree to a "light" or liquid breakfast, also.

Duane Brown  I had ileus after my AVR and the first 36 hours were very unpleasant and have an upcoming double hernia surgery soon and apparently constipation is a huge cause of pain very often following it. So I researched a bit about what to eat for this surgery. I have come up with bananas, white rice, apple sauce, toast, crackers, yogurt, potatoes, black coffee or tea, plenty of water, and definitely avoid whole grains, dairy products, most meat although chicken seems to be the best if your going to eat meat. As well prunes or prune juice follwing surgery is helpful until the digestive system starts working. Here's a link to a brief article about this: https://www.giftgowns.com/blogs/patient-resource/best-foods-to-eat-before-surgery

Marie Myers  One of the things that was suggested to me was to use whey protein added to my food both preop and post op. You need protein to heal, and I thought it was good advice. A diet high in fruit and veggies, and complex carbs is always good advice.

Molly Ivers  Thanks so much for this advice! I had read about eating potatoes, but didn't know about the science behind them. Also great tip about broth and protein - I sometimes add collagen powder to by soup, but now I want to make sure I just have clear broth around - I know broth is very hydrating.

Marie Myers  I felt a little slow in my thinking speed for a couple weeks after surgery. But as I started feeling better and my blood count came up to normal, I felt like my thinking skills were back. Try not to worry about the possibilities of problems. Using the pump is a necessary part of the surgery, and cannot be avoided. Try to focus on the big picture, and know that so very many of us have gone through this big surgery, and we are no "worse for the wear". Wishing you a smooth journey!

Rita Savelis  You are worrying about a lot Molly. I feel for you. It's hard. Various side effects or after effects can happen after OHS. Everyone has a few and then they usually go away as you recover. No one gets every side effect known to man. It can be hard to know what caused what. Your body goes through a lot and there are various meds to take that can also cause temporary side effects. So I'm wishing you a smooth recovery and a bit of peace as you wait for surgery.

Jennifer McInerney  I agree with Marie. Two weeks post op and I am having good and bad days. But the good news is my life has been extended

Susan Lynn  Molly - imagine that every step of the process goes exactly as planned. If something comes up, you will handle it. Don't borrow any worries. We'll be here to cheer you on!

Dan Vechiola  Pump head relates to confusion you get following surgery. Actually it happens with most major surgeries. Your cinfusio will be less and less each day during the recovery process and not a big deal. Place all your anxiety and worries in the professional hands of your surgeon and hospital staff and let go and breathe. Most people on the other side say the surgery was not as bad as they thought it would be. Smile and think positive and visualize a successful surgey and hospital stay.

Molly Ivers  Thanks to everyone for your reassuring words. It seems like everyday I find a new thing to freak out about.

Nancy Luth  I noticed a little mental confusion i.e. using the wrong word occasionally and my concentration was not the best but at 3 weeks post op I am feeling fine mentally.

Bradley Dunn  Everyone is different. I was worried any pump head but instead I had hallucinations which no one every warned me about.

Phyllis Petersen  I had trouble with lengthy concentration for awhile after surgery. The book my sister gave me to read during recovery took forever to finish. There were other little blips, but it does fade.

Jennifer McInerney  I am only 12 days post surgery and although there have been a few bumps, I know that my energy is returning albeit very slowly. Surgery wasn’t a barrel of laughs but the alternative was no fun either. As my Surgeon said, no good ever came of waiting around with something like this. His words really stuck with me as I went forward. I encourage you to surround yourself with positive people, change surgeons if your not inspired by the one you have. This is totally doable and the many stories on this site prove it. Please ask any questions and you will receive responses from your “heart” family. God Bless

Dan Vechiola  Hey Molly! I have/had a bicuspid valve also. It became calcified and needed to get out. I am 6 weeks post op and I was telling my family yesterday that I feel great. I mean "25 years ago" great! The surgery is very perfected these days. I was in and out of the hospital in 4 days. The best thing I have as well as my family is Peace of Mind. With a failing bicuspid valve you won't have the life expectancy you deserve and having the surgery will give you that back. Now that I am in and out of surgery and recovery I say go get that valve out and get a brand new one. My surgeon, Dr. Patrick McCarthy said prior to my surgery that his patients prior to surgery just felt like they were getting older and shouldn't feel like they did when they are younger. I can relate to that a lot. Even though I was asymptomatic looking back now definition of feeling was probably 80-85% of what could have been. I made adjustments like drinking coffee for the caffeine and didn't intensely exercise to compensate and getting involved with hobbies like cooking which does not require a lot of physical effort and activity. I came out of cardiac rehab yesterday and felt tremendous. The only annoying thing that I have found is the discomfort/sensitivity in my chest. Its been 6 weeks and now is a lot better. I no longer wear my incision shield or take Tylenol during the day. Best wishes going forward and look forward to the new exciting things on your horizon.

Penny Jones  Hey Molly, sounds like your surgeon doesn't have a great bedside manner. I got positive vibes from both my cardiologist and surgeon. I had an aortic valve replacement on 8/16 and even with a few bumps along the way during recovery I definitely feel I have more energy and I'm back to doing mostly what I was prior to surgery. Like Dan above I was asymptomatic but still had good energy and exercised daily by walking and biking. I was shocked when my June echo came back with severe stenosis and when my surgeon showed me the pic of the valves after surgery I wondered how in the world I made it through the day. Couple things you might run into that I wasn't prepared for is afib and pleural effusions but I only had 4 episodes of afib (2 in hospital) and the pleural effusions seems to have gone bye bye too. As my cardiologist said - your heart just had the heck beat out of it and it's mad so it needs to time to recover and these little hiccups is one way for it to tell you to slow down. You will get through this so go into this with a positive attitude and learn this from someone who thought she was superwoman and would fly through recovery without any hiccups - you ain't superwoman. Listen to your body and let the recovery takes its course. Get up and move and don't let it get you down if you have some really good days and then have several bad ones. The heart needs time to heal from being beaten and battered. Good luck to you.

  I am just curious as to why your surgeon is so negative - the vast majority of the journal's on here are so positive.

Richard Buckley  Agree with Vito that you might want to find another surgeon. The process for patients is tough enough without having a surgeon who is confident.

Judy S  Molly, I hesitate to say this because of the timeframe you are on, but you want to be confident about your surgeon and he/she should be confident in the outcomes of your surgery. Faith/trust are really important for your mental state going into surgery and your recovery as well. It sounds as you didn’t choose your surgeon. This is an important life decision, and I wish you could find a surgeon you could believe in.

Rita Savelis  You should feel better after OHS but it may not be immediate. I personally was happy with my surgeon's honesty. He said I'd be tired for awhile, and I was. Then I got better. It takes time to recover. However, what I have noticed on this site is that those who were suffering from weakness, tiredness before surgery are often amazed to find themselves feeling better. They didn't realise how much their energy had been compromised by their hearts' difficulties. Everyone has a specific problem and body and heart as well, so everyone's experience is different. Different patients need different things. You are going through lots of emotions now as you wait for OHS, so it is understandable that you feel up and down about this big experience in front of you. Trust your surgeon. Wishing you the best. Take care.

Jennifer McInerney  I can relate, even with the noisy neighbours. My insomnia seems to be better, although my nights and days have been a bit confused a couple of times. I am overall sleeping much better

Susan Lynn  I think I went to the salon the week before. I knew it would be awhile before I'd be able to get back. (Talk about incentive to recover!) I don't think it matters, but reach out to your surgeon's office if you're worried. All the best to you, Molly!

Louanna Miller  I went 10 days before. Glad I did because I was in the hospital for 10 days and could not wash my hair or shower. Just sponge baths. I had dry shampoo and that helped some.

Marie Myers  The hospital pre op visit provided me with a solution to shower with the night before and morning of surgery. I did sleep on freshly laundered sheets the night before, as recommended. It's another precaution against infection. Can't hurt, that is for sure.

Jennifer McInerney  I got sponges permeated with solution. Wet them, let them foam up and wash indicated areas. Pretty simple. My sheets are changed every few days so I was pretty casual about that. However, my husband became this germaphobe neat freak. I just kept telling myself it was coming from a good place. He washed my towel and sheets with bleach, let them air dry and only then was I allowed to use them the night before.

Rita Savelis  I think you will be given an antibacterial soap to use (or ask at your pharmacy). Hospitals/doctors have procedures in place to prevent infection, but you will also be prepped in hospital, obviously.. That said, don't go crazy about worrying about infection. In France, where I live, all patients will spend the night in hospital the night before surgery so they then are given the soap they need and take showers in hospital....

Phyllis Petersen  I was never told about clean sheets! I stayed in a hotel for 3 nights before surgery. Also, you wipe down again in the hospital.

Rob Sparling  Molly, I completely understand. I was shocked too. I saw the pathology report from my “original equipment” aortic valve and it is pretty cut and dry that some of us just get bad parts, whether that is driven by genetics or other factors it doesn’t matter. I needed to do it, the question was when.

Rather than worrying and doubting if surgery is for you, I believe you should think of this as an opportunity to extend your life! Wake up each day and recite “today is as good as any other day to make my life longer!” Right? It is true. Maybe that will help!

But yes, there is a probability things go south or that you welcome new complexities to the party that are undesirable. That is what you need to be aware of so you can minimize those risks and pre-empt them (selecting team, time, procedure, valve, etc.) so that the balance of risk shifts in your favor in every category! You are going to get that education — do so quickly!

Everybody has a very difficult trade-off but it gets harder the younger you are because the lifespan of a bioprosthetic device is unknown (or there is a need for blood thinner with mechanical valves that is lifelong). The choice of valve brings different risks and impact on lifestyle and is therefore a very personal one.

But you can and should be optimistic! We are all going through this together and learning about different approaches and successes everyday!

You are going to get feedback from folks on their choice of mechanical vs bioprosthetic. In the meantime, get real data to form an opinion about longevity of bioprosthetic valve. “In God we Trust. All other must bring data.” Research Structural Valve Degeneration (“SVD”) and look for research with names of reputable surgeons and peer-reviewed medical publications. You may be more comfortable when you see objective clinical info. My surgeon told me bioprosthetic valves last 13 years on average (not three to five).

We can help!

Catie B  Welcome, Molly! I am really not liking that your surgeon majored on "grim outcomes" with you. When I realized it was getting to be time for my surgery (aortic aneurysm expanded to surgery threshold), the cardiologist I was seeing said, "Oh, you don't want that surgery--that's a terrible surgery." Surgeons confirmed it was time and I unloaded that cardiologist. I think Rob's idea of seeing another surgeon is a good one. The surgeons I consulted were positive, reassuring, and had done a gazillion aortic valve and complex heart procedures. Their emphasis was on how excellent their outcomes were. I was 57 and since I can't take warfarin long term, I needed and received a tissue valve. Best to you!

Louanna Miller  From my recent experience this summer of learning that I needed OHS for Mitral Valve repair or replacement, I think educating myself quickly on the procedures, materials and the surgeons was the best thing I did. I went online and looked for the best surgeons in my area. I wanted to go to someone who had successfully completed many of them and who continues to perform many of them each week.

Read about the different valves and the pros and cons. Like Rob said, there are trade offs with each kind. My surgeon had me make the decision about what kind of valve I would want used in the event that the surgeon went in and saw that the valve needed to be replaced. I had already chosen a cow valve as I did not want to be on Warfarin the rest of my life. I am only 54 and chose the cow valve over the mechanical as I knew I would be bothered if I could hear the clicking sound in addition to taking the blood thinner for so long. He was very pleased with my decision and said it is the choice most people are making at this time.

It is a slow recovery, but at 7 weeks post surgery, I know I will get back to a more active lifestyle as I get stronger and continue to walk more and heal.

I am glad you are on this website and this community can offer you a lot of support.
If you don't have Adam's book, you may consider getting it as it is informative and an easy read for patients and families.

Ask all the questions you have. We are here for you and will support you in your journey.

Louanna Miller  I just reread Rob and Catie's notes to you.

I agree with both that you may want to consider another opinion. Northwestern Medicine in Chicago has a program just for valves. On their website they also have a place where you can seek a second opinion. Just something to think about.
Don't take your heart too lightly, there is successful treatment and you need to be with someone you completely trust and feel confident in their attitute and ability.

Rob Sparling  Fully agree with both Catie and Loanna! Molly, you didn’t mention where you doing your procedure. As a fellow Michigander, you should set the bar at least as high as UMich and get the surgeon(s) with the most experience to explain everything to you that you need. Dr. Bolling (?). Whether Ann Arbor, Chicago or Cleveland you will be choosing from the most talented and experienced surgeons, cardiologists and surgical/recovery teams. Find somebody confident and optimistic who has “seen it all”!

Molly Ivers  Thanks everyone! I was originally scheduled for surgery tomorrow, but then it turned out the surgeon I had seen didn't do mini invasive valve work, so that is how I met the new "grimer" guy. He wants me to pick my valve myself, he just suggested the mechanical one for may age group. Up until him I had never heard that people under 60 "wear out their valves fast." His reviews are very good online and I need to get this surgery soon since the docs say they caught me at the "tip of the envelope." If I had money I would go to U of M, but my funds are limited. I am really lucky I even have insurance even with my high deductible. I like hearing that a lot of you picked a tissue valve too! I don't think I could live with the ticking sound or with being on blood thinners for the rest of my life.

Dan Baltazor  Glad you joined here Molly. You’ll find great information and inspiration to keep moving forward.

Dan Vechiola  Welcome Molly! I found this community by googling " I need heart valve surgery and I am scared" so I can relate to how you are feeling. Thanks to the great people and information in this community I tranformed those fears into knowledge and confidence. Using the information attained here I found one of the best valve surgeons in the world (Dr. Patrick McCarthy) and the No. 7 hospital in the country for Cardiac Surgery (Northwestern University). I also learned here that I had choices and that I was the engineer of my journey train. With the assistance of Dr. McCarthy I chose the Edwards Inspiris Resilia tissue valve. This new valve is state of the art and is projected to last up to 20 or 25 years. This valve is also manufactured with V Fit technology which allows a TAVR (non surgical replacment valve) to snap into it as part of a valve-in-valve prilocedure. Get involved with this community and learn about your options and your condition and develop the confidence to move forward and manage your condition. It is best to have the operation to correct your valve while you don't have symptoms and you heart is not weakened. Good luck and ask this wonderful community questions when you need guidance because we all are here to support you.

Meredith Bray  Hi, I was 43 when I had my surgery in 2014. I have a mechanical valve. I switched cardiologists and primary doctors the month before surgery. I had bicuspid aortic valve with stenosis also. My surgeon recommended a mechanical valve, and my cardiologist recommended a tissue valve. I'm not crazy about being on Coumidin, but from the research I did, I understand that choosing a tissue valve guarantees additional surgeries. I knew full well that choosing a mechanical valve was no guarantee of further operations, but hey are unlikely. I know a guy who got a mechanical valve in the mid-1960s. He's still going with no re-operation.

I didn't feel sick until about 6 months before my surgery. I didn't adapt well to temperature changes - I was always cold, but the high heat in Florida would wear me out in a minute. AND... like my surgeon said, I didn't realize how sick I was until I got better.

Most patients have no complications. My scary moment was when I wasn't breathing deep enough the afternoon after surgery so my blood gases were building up. My nurse had to give me something the help break them down, then pester me to breathe. I was so scared to take a deep breath because I didn't want to hurt! But I was up and walking the next morning. I lived with my diagnosis about 10 years before surgery. I was so glad to have it taken care of!

Everything will be ok.

Meredith
Holiday, FL

Molly Ivers  Thanks for sharing your story with me Meredith. "If" mechanical valves were quiet I would consider one, but little noises bother me and I am a klutz who is always bumping their head or other body part into something so I am going to go with a tissue valve. I know the valve will eventually wear out and I'll need another, but the next one will probably be TAVR (that's what they told me). Sadly my surgeon does not have the best bed side manner and it's taken me weeks to find some inner peace about the whole thing. Despite having fears I know the only way to solve this problem is to go through it, not around it. An inner voice tells me things will work out and I'll heal at a good clip. Years ago I took a super bad fall and sprained the entire right side of my body -- it took years to get over all the pain. But since I am a go-go-go type I forced myself to get out and about on crutches as often as I could. Thanks again!