Lisa's Guestbook

Liza Norman posted a note for Lisa that says: Hi Lisa,
Congratulations on being on the other side of surgery, I am a year now post mitral valve repair surgery.
I read your request about Bras. It has been really hard to find anyone even talking about this, plus
hard to find a bra that isn't too awfully uncomfortable. ( I had surgery from the side of my right breast between the ribs to my heart, perhaps you had that too?) I am still sensitive, although nothing like the first few months.
There is a post surgical brassier that looks perhaps comfortable, but way too complicated for me.

I am wearing a Leading Lady front closure bra called the Meryl, style # 110.
You can order them on line form a lot of sources, they're very inexpensive, and cotton.
This bra is not the best support, but it is easy to wear, and separates the gals to some extent.
It can be modified with darts and such if you so wish...

I have worn armored tank wired brassiere since high school, this is actually quite a relief to wear a soft bra..

I bought a size larger around so there wouldn't be a lot of pressure, and sometimes I would fold a cotton handkerchief to block the elastic band from pressing so directly. Sometimes I wore it over a tank top so it didn't have as much pressure..

After I felt better I started working on designing a comfortable bra, but then covid came along and life became more complicated.

Hope this info helps, sorry for chattering on.
Liza

Susan Lynn posted a note for Lisa that says: Lisa - Welcome to recovery! We're thinking of you and looking forward to your updates! Be well!

Debbie Swartz posted a note for Lisa that says: Lisa, we got this! Prayers all goes well tomorrow for us both! May peace and comfort flow over you!

Steven Methot posted a note for Lisa that says: Best of luck tomorrow and for the recovery. Will be thinking of you.

Debbie Swartz posted a note for Lisa that says: Well, looks like we both will get much improved hearts on Tuesday! God bless and heal you and smooth recovery for us both!

Debbie Swartz posted a note for Lisa that says: Lisa, how are you doing? 2 weeks to go "valve sister"! I have things ready for when I come home like an electric recliner someone gave me. Made 4 kinds of soup and put in the freezer. Was told I may loose taste. Oh well. Maybe I won't. Be glad when this is behind me. Right?

Lynne Jeffreys posted a note for Lisa that says: Hi Lisa, You will ace this on Oct 27th. I also had a bicuspid aorta and had surgery Aug 11, 2015. Like you I didn’t want to wait to get really sick. I think it is much easier on recovery doing it before you’re in an emergency. So kept your head up despite your nerves etc. and before you know it this will be on the other side with a whole new life ahead of you!

Rickey Michael posted a note for Lisa that says: Lisa,
I had an aortic valve replaced 2013 at the age of 72 and was obese with type 2 diabetes. It was a quick decision to get the surgery cause the surgon said I had a year to live maybe with out the surgery.
Anyway I advise not to wait. Get it while you are in relatively good health.
If I survived with my problems you should do very well with a quick recovery.

Sandra Graham posted a note for Lisa that says: Hi Lisa,
I was born with a bicuspid aortic valve. I became symptomatic slowly, so I did not realize how sick I was until after I had the valve replaced and felt better. I had been adapting to my diminished capacity for any type of exercise. My only regret is that I did not have the valve replaced sooner. My St. Jude's valve was implanted nearly 26 years ago. I was 42 years old. Today, I am still healthy. I still work at a demanding job and I enjoy life. Every day since my surgery has been a bonus day. I wish you the best of luck with your surgery. You will be amazed at how well you feel within weeks of getting your new valve.

Dave Williamson posted a note for Lisa that says: Hi Lisa,
I am two years post surgery. Had the same diagnosis as you do. I feel great and the recovery was easier than I expected. Be strong and you will get through it. I was back on my bicycle 6 weeks after surgery and have been riding strong ever since. Yo will be back out there running before you know it. Medical teams know exactly what they are doing! You will be in good hands.

John Deysher posted a note for Lisa that says: Hi Lisa,
My, Dad (who also had heart surgery) told me that anyone who goes through heart valve surgery should consider it a gift without which one would die a premature death. In most cases, no medications, exercise, diet or anything else can solve the issue, surgery is the only option. Before surgery was available, (not that long ago) a valve issue made the heart work too hard, became enlarged and ultimately fail. Thank goodness we have surgeons & hospitals that can help prevent this from happening to most people.
So put a smile on your face, go forward & be thankful that this wonderful treatment exists which has made the lives of millions so much better. Good luck, keep the faith....

Ian posted a note for Lisa that says: Like you, I am a planner.
For about 10 years prior to surgery (Bicuspid AVR), I was checked annually...and then every sixth months...until one day - little over five years ago - my cardiologist said "it's time". So I said "when" and he said "now". Gee, thanks a lot !!. I think he did that on purpose so that I would not suffer the anxiety of waiting. Nevertheless, it took about a month to have the actual life-giving experience. I was discharged from the hospital on the day before my birthday. Now, I celebrate both dates.
Never for a second double-guessed my cardiologist or heart surgeon. Then again, neither said that t would be an "elective" surgery! My doctor opted to put it off as long as possible - but he made me aware of it, and I was ok with that decision.

As far as the surgery is concerned, I wish for YOU the same experience I had. I was 2 days in ICU, 3 days in the cardio section, and then home sweet home. At had a couple of bad days at home shortly after surgery, but they were expected. Getting back to some normalcy took several weeks.
In all honesty, for me to truly be at nearly 100% took about 3 years. I got up to maybe 80% in about a year and plateau there. The improvement after that was slow, yet incremental. Today, I feel much better than the years leading to surgery. BUT...according to my cardiologist, I will never be at 100% because the replacement valve is slightly smaller than the "original" model. Oh well, very small price to pay.

Knowing about it is the best part - frankly. You have time to PLAN for surgery.
Get the house ready for recovery, plan for meals, getting mentally ready, spend time with loved ones, share your feelings, and pray...a lot. Find peace. And, the best part, PLAN for the future.

The rest is - as it always has been, and always will be - up to God.

Edwin Johnston posted a note for Lisa that says: I know you are all tied up in knots. Lean on your Family and Friends and you will be fine. Always find you a purpose for every day.

Cary Williamson posted a note for Lisa that says: Lisa, you can do this! I had a bicuspid aortic valve also and a 60% blocked widow maker artery too. Sentara Heart in Norfolk, Virginia with Dr. MaHoney and Dr. Philpott did a great jo with a new bovine cartilage aortic valvfrom the valve and bypass. Got atrial fibrillation from the valve replacement, but that was in October 2016 and I have never felt better, even with the pacemaker. I was back at work on light duty the Monday after Thanksgiving. I now celebrate two birthdays each year; my real one and October 20th., 2016. Good luck!

Ruth Rehak posted a note for Lisa that says: Hi Lisa, sounds like you and I had a similar diagnosis, I had a bicuspid aortic valve with stenosis and a small aneurysm. Unlike you I did not even think that I was symptomatic, I got slightly out of breath during spinning classes but I figured hey, I was 67 and doing spinning haha!

I had my valve replaced with an Edwards bioprosthetic valve on July 15th, 2019. I will not lie to you, it was rough after the surgery. Not in terms of pain, I would rarely take a regular strength Tylenol (loved the lidocaine patches immediately after I got home!). But the fatigue was terrible. Walking around the dining room table exhausted me but then slowly and surely I was able to walk greater distances. 7 weeks after my surgery, I did a 5 week trip to Italy. I did have to forego some of the stairs but I was surprised that I had enough energy to really enjoy myself. I would recommend that you do the cardiac rehab at a facility rather than on your own, and at the earliest possible time.

You can do this! Given your level of symptoms it seems like doing the surgery now is a good idea. Best wishes and all positive thoughts to you!

Nancy Weber posted a note for Lisa that says: Lisa,
You are going to feel so much better!!!!! I could not complete a stress test in
August of 2017. My Cath showed not only the aortic stenosis which I knew
I had but also two blocked arteries. I had open heart surgery the first week
of September. I am now 78 and trying hard to exercise often and watch diet.
The last thing I was asked leaving rehab was what do you plan to do to continue this. Even with the pandemic, I keep moving.
I have to point out my scar :)

Don posted a note for Lisa that says: Lisa,
I'm praying for you and I know you'll do awesome. I have had two mitral valve surgeries now, the 1st at 40 y.o., and I don't even realize I have an artificial valve. Keep thinking positive and know that God has your back!

Tim Howald posted a note for Lisa that says: Lisa,
Before my surgery at the Cleveland Clinic I would be winded walking up stairs, now walk/run on a new Peloton treadmill until I decide it is time to stop.
You will regain control of your life, and leave the anxiety that you are now experiencing behind.
Godspeed!

Sandy Hinesly posted a note for Lisa that says: Hi Lisa, this is going to be such a life changer for you. I had my aortic valve replaced with bovine 3 years ago next week. My son and I are going off the grid camping in 2 weeks and I can't wait. Ia am 73. Before surgery I could hardly catch my breath with any exrcise. Recovery is not easy but doable. I did Cardiac Rehab at hospital for 40 sessions and that is what helped the most. the first month post op I took my pain pills and rested and let nature do its thing. I hardly have a scar now and feel great! you can do this.

Artie Rubin posted a note for Lisa that says: Hi Lisa,

Everyone's experience is, of course, their own individual one. But if it helps any, I had Open Heart Surgery for mitral valve repair and aortic valve replacement (two for the price of one, lol) at the age of 70--the full chest cut--and everything went terrifically. Granted, I was already in good health. But I found that what was a MAJOR event to me was just another OHS for my team. Not that they weren't totally dedicated to me--they were! Just that they'd done this so many times before. Lisa, they know what they're doing, trust me on that. Put yourself in their hands and relax, as much as possible. You're doing the right thing. I'm 75 now and feel great. I also consider it one of the greatest spiritual experiences of my life. It taught me so much about trust and about how wonderfully our bodies work. I hope this helps your anxiety. My very best wishes.

Thomas Micek posted a note for Lisa that says: hi Lisa, My Cardelogist moved me to modert to severe range in 2019 for my Aorta Heart Valve and told me to start visiting surgeons. I live in Southeastern Pa. and have outstanding Hospitals in the area. I began visiting them immediately and began the bargaining with myself about the need for surgery. After visiting locally I decided to visit The Cleveland Clinic. Immediately I noticed a difference in the attention to detail. Up to the last minute, I kept bargaining that I could cancel the surgery with support from the staff at Clinic telling me I could do it. It turned out that part of the process was a Heart Catherization which revealed a 70% blocked artery. I had the Aorta valve replacement along with bypass surgery by Dr. Tong on 8/21/20 and on my way to full recovery . After spending the summer jogging 4 miles in the heat I believe I was blessed that I didn't push it off any longer.

RAY PIPHER posted a note for Lisa that says: Hi Lisa. I too was born with a bicuspid valve and never knew it. Not one Dr in all the years going to Drs ever mentioned a murmur, 2017 I was diagnosed by a cardiologist that was (for lack of better terms) paying attention to what he was listening to. I was diagnosed as severe stenosis although I really didn't show any symptoms...I was very lucky. My thought on your "elective" note is please don't wait until it becomes an "emergency situation. Right now you have the freedom to choose who and where this gets done. Once its an emergency...you may not have that luxury and be forced to go into a hospital that maybe you wouldn't have picked to begin with and even worse maybe a surgeon that you just get placed with....just another thought to consider.

Bill Croutch posted a note for Lisa that says: Hi Lisa....
I’m 73. Had aortic valve replacement, rebuild my aorta, maze procedure.....March 20th at Cedars Sinai in LA. The anticipation turned out to be far less than the event. I was in the ICU for 4 days and the hospital for an additional 5. I do not recall ever being in any pain! Uncomfortable for the first several days. Then improvement seemed to accelerate. I would not hesitate for a moment to do it again or advise anyone else to do it. Six months later I am essentially completely back to normal. You will improve significantly once you get back to your own home.
You got this!!!

Debbie Swartz posted a note for Lisa that says: Hey Lisa, I too have a bicuspid aortic valve and aneurysm of 4.5. Surgery scheduled for Oct. 27! Having mild symptoms of fatigue and some light headedness. I am 69. I am confident with my surgeon. Like others will be glad to get to other side! This sight is helpful. So many have done so well! I am in great shape and health so I don't foresee any problems. Just hate the first few days! One day at a time!

Fay Kozas posted a note for Lisa that says: Hi Lisa, I think it is better to have the surgery sooner rather than later, before the symptoms become severe. Be strong! You can do this! Just think--when you wake up, the risk will be over. And then, it's on to recovery. I wish you all the best. You will be in my thoughts and prayers.

ken groves posted a note for Lisa that says: My issues not the same but similar. I had an aortic tearikely from a severe whoppin cough it burst early AM and blew out and blocked my aortic valve. I should have died but the quality o surgeons and technique made my surgical possible. I have a pig valve. It's been 5 years. I am 70. I bike 20 miles 4 days a week, swim a mile twice a week and do Bowflex max twice a week. All after replacing upper aorta and the valve. I assume yours will be venous. Piece of cake. If you are willing to do the rehab you will be in good shape in couple of months. My surgery was Aug 6. Was hiking mountain trails in Yosemite in mid October.

You can do it and will do fine.

Scott Wolff posted a note for Lisa that says: Lisa---I had very similar surgery a year and change ago. I wound up having alot of my ascending aorta removed (because of a larger than expected aneurysm) and got my aortic valve replaced. Since it is a bovine valve--meat is on my menu alot :-). My year checkup with an Echo and a CAT scan (and Dye) showed (as Johnny Bench says) no leaks no drips and no errors. The surgery went well and although I missed about 2 days (my wife said I didn't do anything too crazy) pain management was basically tylenol (the pain meds at least the narcotic ones) made me sick. I was out of the hospital after 5 days and back to Idaho. I am able to left all I can now, ride my Nordic track, bike, hike and do all the stuff I want to do. I would just say you will be fine. Fear not worry not. Its just another life adventure. I was diagnosed with this aortic condition when I was 40, the doc said it would need to be fixed in approx 10 years. I got it fixed 32 years later. Like I said it was just another life adventure.

Susan M. posted a note for Lisa that says: Chin up! Be strong. You will get through this very well!

Gene posted a note for Lisa that says: Hey Lisa. I had an ascending aortic aneurysm repaired 12 years ago. It might help you to know that my surgeon told me after the operation that mine was a lot larger than the pre operative tests showed. Various tests measured mine at 4.8 cm, then 5.2 cm, but the actual size turned out to be close to 6.0 cm - so it’s best to get it taken care of!

Fred Seling posted a note for Lisa that says: Lisa - I am 2 years plus out from bicuspid aortic valve replacement and am very glad I had the surgery. I didn't really think I had symptoms, but I now know I did. Just follow the doctors orders and you will be fine.

Jim Walsh posted a note for Lisa that says: Hi Lisa. I had aortic valve stenosis, discovered in August 2018, by chance. No real symptoms just came across it during testing. They said it was a bicuspid valve and I would need open heart AVR surgery sometime in the next 2 years. I was 57 at the time. I had the surgery in November 2019. I was having the same thoughts of “ do I really need to do it now, I have no symptoms “ etc, etc. I decided to do it on my schedule when I could plan my recovery schedule and time off work.

Well, it was the best decision I could have made. Surgery and recovery were a piece of cake. I was walking around just hours after waking up. They threw me out of the hospital on the morning of day 4. I never had cardiac rehab and literally if I didn’t have a 10 inch vertical scar ( fading fast ), I tell people I wouldn’t know I had surgery.

I know you are having a million thoughts and concerns. Reading the comments on this site before my surgery was very helpful. Bottom line, to us, this surgery is complicated and scary. To your surgical team, it is very common and they are better at doing it than Peyton Manning was throwing a football.

If you ever want to talk or have any questions, feel free to send me your contact info and I’ll reach out. Good luck you will crush it!!!

Don Tatzin posted a note for Lisa that says: Hi Lisa,
I was asymptomatic when I had aortic valve surgery about two years ago. One of the best decisions I ever made. I was very fortunate in that my recovery was quick. More importantly, I am back to my prior your activities and I no longer have the anxiety of upcoming surgery hanging over my head. I know you are going through some tough weeks but just focus on how much better you’ll feel once you have the surgery behind you and are on the road recuperation. Best wishes!

Patti Cronin posted a note for Lisa that says: Lisa hang in there. In my opinion you are experiencing the very worst time in the whole process, the pre surgery time and the am I making the right decision time. Some folks enjoy this time because they are center of attention, I hated it, feared it and second guessed myself every waking minute. I had no symptoms but knew my leaking valve was not going to improve with age, and no vitamin, exercise or food group was going to help. The only help was going to be surgery.

Like you I like to exercise so think of this as a cross county run on a course you have never been on before and only have to run once. You heard the course has one big hill, 3 miles or 3 weeks away. You know others have made it but wonder about whether you can. You can !! Adam and Arnold would say you have a great "coach". You are running in place now and then suddenly the 3 miles and the hill have passed and you look back and realize you did it. As I like to say in a few short weeks it will be in your rear view mirror.

Talk about indecision, I had 5 medical opinions from across the country, 2-you should have had surgery yesterday, 2 why don't you wait and a third you have an interesting case. I made my decision and while I won't say there were not days I questioned myself during the three weeks pre surgery and up until the night of surgery, 4 years out, I never think of my heart unless I receive one of Adam's newsletter and I say a quick thank you to myself for making the right decision and to send an encouraging word to someone in the countdown phase and running in place. I still remember that ;-)

Best of everything. I look forward to your smile on the other side of the hill.

Susie Sullivan posted a note for Lisa that says: Hang in there, Lisa! I was diagnosed with aortic stenosis and bicuspid aortic valve at birth in 1960, and I’ve had three open heart surgeries as a result. I always say the worst part is the waiting and anticipation. Once you wake up after surgery, you just get to work recovering. Wishing you a speedy recovery! Soon you’ll be feeling so much better! I’ve run two marathons despite all the heart issues.