Sandra's Heart Valve Journal

Ann Jackson posted a note for Sandra that says: Sandra, your case is complicated, as mine is. Two years after my bovine AVR replacement, I started having symptoms of shortness of breath and extreme fatigue. At first a Cath revealed re stenosis, was scheduled for surgery..... but my symptoms improved and we are still waiting. Since then, it has been determined that the valve area and root need to be extended, as the blood flow is not sufficient. Another opinion showed my valve is working ok for now, so it's easy to second guess these symptoms .. Hopefully, it may be something else going on for you. I feel ok most days, and still worry about the best path to take. I do worry about waiting too long. Hope you will get checked out soon. I will be praying for you and that your doctors discover the best solution for you.

D. Scott Lee posted a note for Sandra that says: Hi Sandra!
My aortic valve was replaced in Oct 2013. The surgeon told me that I had a very healthy heart, inspecting it physically with his hands. He told me that my old valve had been weakened since birth and the new one would last for an average of 15 years. My cardiologist tells me that the medical community is making great strides in replacing valves ( I had my chest opened up) and by the time my valve needs to be replaced it will be a simple replacement through the groin.

I used to lay awake listening to my heart beat and wondering what was in the future for me. Today, I don't even think about it. I do not take any meds (I got off all meds as soon as I could as I worked in pharma for 30 years and did not want to depend on drugs to keep me going. If something is abnormal with my blood test, I take care of it myself naturally and with exercise.

The only issue that has come up was some atrial fib which lasted from the tennis court to the grocery store and to the doctor. I was not adding electrolytes to my water on the court. They put me on amiodorone and coumadin and I got off them in a week.

I think that exercise is the key to recovery. I am 71 and I play tennis four times a week and I am active outdoors, yard work, landscaping etc. I have a lot more energy today then I had three years ago even tho I was playing a lot of tennis then too, plus riding my harley a lot.

As you are a nurse (I was a independent duty med tech during the Vietnam War) you are aware that the treatment plans we get from our doctors can be modified by the patient in concert with the doctor. It is our responsibility to take the helm and get off our meds. If a doctor goes to the rx pad it is time to pipe up and ask, hey, what other ways can I correct this? Supplements and a proper diet with a lot of exercise should do the trick, but we have to work for it.

The biggest change in my diet is that I always have 'one' instead of 'two or more) of whatever. Like no seconds! I use garlic, fish oil, asa, and CoQ10 and a lot of flax meal. Meats and veggies are all organic and I have replaced eggs with 'Egg Beater' and for milk I use Carbmaster. I never drink milk with meals anymore..always water. When I play tennis I hydrate up with SmartWater for the electrolytes. I also drink a lot of homemade smoothies with a lot of acai, bluberry, blackberry, berries of all kinds, plus protein and vitamin B, Iron etc.

My note to you is so long I forgot what prompted me to respond! Sign of just 'old age' not anything to do with my heart! lol.

I really appreciate the doctors and nurses in our medical community. They work tirelessly every day to make us feel better. I hope you are doing fine and it is good that you are helping others along the way!

MB Carstens posted a note for Sandra that says: Hello! I will be having valve repair surgery at Penn soon and would love to hear about your experience there. So far I am very impressed with my experience.

Ernie A.S. posted a note for Sandra that says: Sandy!!!!!!

I thought the worst ride for your heart at Disneyland was Small World, because you want to kill yourself during the ride.

Mom's doing OK. She says she has "a case of the 79ers". She went to the doctor and they said everything was fine with her. So, she asked why she feels the way she does and doctor said it's because she's 79!

I haven't been walking and I'm too fat, and I need a job and insurance, but other than that I'm doing well. :)

Keep on trucking, Wummers!!

Carol Jackson posted a note for Sandra that says: Sandra,
It's so good to hear you are doing so well after your 2nd surgery. I remember following your journal as I was preparing for my surgery in Oct. 2013.Your journal really helped me. I liked your comments about that it is normal to fear the unknown and also getting back to a normal life. As I come up to my 1st anniversary I am so glad to be on the other side of surgery instead of the 5 years before worrying about it. Again, glad to hear you are doing so well.

Eleanor posted a note for Sandra that says: Thank you for posting an update, for the old timers on the site who remember you from a year ago, and for new people like me, fresh from a first surgery. It is inspiring to hear about your progress over the last year. Continue to do well!

Meredith Bray posted a note for Sandra that says: Happy Anniversary! I rode Cheetah Hunt at Busch Gardens on my 3-month anniversary :) GO FOR IT!

Ernie A.S. posted a note for Sandra that says: Sandy!!!!!!!!!!!!!!!!

You go, girl!!

Continued good health you.

Ann Jackson posted a note for Sandra that says: Sandra,
Congratulations on your recovery! You are indeed very strong to have endured two surgeries. Your words of encouragement were very helpful to me as I just found out today I need a redo. My bovine valve from 3 1/2 years ago developed scar tissue and has gradually closed again.
Wil pray for your continued good health.

Scott Lee, Prescott, Arizona posted a note for Sandra that says: I'm looking forward to reading your journal
Sandra! I am 14 days post op with the Edward bovine aortic valve. I am a tennis player (4 times a week) and always thought my chest pain was caused by inflammation like costochondritis until I awoke with tachycardia over 147. I am interested in hearing all about what expect so I can keep the old anxiety level in check. I am on amiodarone and plavix at the moment and do not take any pain killers. My bp is up and down a is my pulse. Yesterday I walked a mile and consistently use my pedal machine and breathing apparatus. At times, if needed, I take half an Ativan to reduce any stress. I am 68.

Shelly Poluka posted a note for Sandra that says: Sandy,
So happy to read you are doing well. What a frightening experience. You are no doubt a very strong lady to have endured two surgeries in 12 weeks. I am glad you updated your journal it helps to know as much as you can about the surgery and recovery and the unexpected. God bless.

Carol J. posted a note for Sandra that says: Sandy, Wow! you've been through a lot. So you got a human valve? I didn't know that was possible. Explain please. I just found out today I have to have surgery at Mayo within the month for my aortic valve and aneurysm.

Ernie B.S. posted a note for Sandra that says: Sandy!!!

Sorry you had to do it TWICE in three months. You are a ROCK!! I'm glad you are doing well now. Very encouraging and inspiring.

Bill Bard posted a note for Sandra that says: Thanks for your wonderful words of encouragement. Your bump in the road was a lot higher than mine! Please know that I will follow your progress and know you will do fine!

Ernie posted a note for Sandra that says: Sandy!!!!

Where'd you go? Update?

EG posted a note for Sandra that says: Hello Sandra
My heart condition was exactly as yours. I had a Aortic Valve Bicuspid I had to replace my Aortic valve too. I had chosen to do the Ross Procedure but I live in Canada and my only surgeon that does this procedure was 67 not much option there never the less I end up having a tissue valve. It will be 1 year on the 21st of August and I am feeling great. I had one of the best sugeons Dr. Tyron David. It does get better. Still struggling to loose the weight like you I am in my late 40's. Good Luck

Rebecca schneiderj posted a note for Sandra that says: I have been reading your journal. I thought I had an idea of what I'd look like after surgery in the ICU. Oh my. I was not thinking about all those lines and tubes! Major distressing to think about now. 4 weeks till surgery to replace valve. Wow! I

Ernie B.S. posted a note for Sandra that says: Thanks for reading my journal and signing my guestbook, Sandy. How many people can say their lives were saved by a COW?

I'm very encouraged and inspired by people on here like you, and I look forward to being on the "other side" of this operation.

Keep smiling and stay healthy.

Carol J. posted a note for Sandra that says: I was reading over your journal, story and guestbook. I can't seem to find what kind of valve you ended up getting. What did you get? Glad to hear your are doing well.

Sharon K posted a note for Sandra that says: Glad to hear you're doing well, Sandra. I had the blurry vision as well; did not have fever, but one minute I was cold and under the afghan and the next I had the ceiling fan going Drove poor hubby crazy for couple weeks. Vision still bothersome at times, but body temp seems to have stabilized. Take care and continue healing.

Peter posted a note for Sandra that says: Hi there. I had the same blurry vision for a while after surgery and while I don't think I had a fever, I got the chills every night for at least a couple weeks after surgery. It certainly felt like having a fever but eventually disappeared. I was told that it was a side effect of the anasthesia. Hope you feel better soon!

Peter W.

Amen to those words, I had a similar ride. I feel great now

Best of Luck

Matt

Sandy,
Glad to hear you're doing well and feeling better! Keep up the good work and you'll be off those Percocets in no time!
The most important thing I've learned so far is to listen to your body and rest when it tells you to. I've tried pushing myself a bit and gotten knocked on my ass! lol no biggie, just have to remember my body isn't used to a more efficient ticker yet.
Kenny Thomas

Me again, just pushed the wrong button some how! I was saying my only pain med needs are regular Tylenol maybe a couple of times a day. Slower moving but otherwise it truly is amazing what your body goes through in that 3-4 hour period and then the recovery process!!
I think about those waiting and those recovering and lift them up daily!

Leslie Baugher
AVR/MVR 5/10/2013

Sandy,
I to found the process "easier" then I anticipated! It is day 8 post surgery for me and I am wearing regular clothes and sitting on my swing and the day is beautiful!!! My

Happy to hear you are doing so well, Sandra. I agree to pick the correct doc and facility and trust. We are doing very well; saw my regular cardiologist earlier in the week and received good report. Go to Chicago next week to meet with my surgeon and his NP and their cardiologist. Each day gets better and I feel stronger. Off the Tylenol completely. Made a grocery run with the husband yesterday. Take care and happy healing.

Absolutely love your attitude! Way to go...Keep up the good work. It's all down hill for you from here.Take small steps forward and listen to what your body is telling you.
Al Zebal

I came home from the hospital yesterday. The ride seemed to go really well, I even walked into get my prescriptions. Unfortunately I went a little too long without pain medication because I didn't think I needed it. 4 o'clock this morning I woke up And had to take a Percocet. And I had really weird dreams and woke up kind of sweaty And irritable. I hadn't taken a Percocet until the day I went home. I think that was a mistake. I should have tried those out sooner. They only sent me home with 20 of those so I better make them last. I feel helpless.

Hi Sandy!
I hope you are well and your recovery has been easy! Thinking of you today so I thought I'd drop a line and check in. Looking forward to your next update!
All the Best,
Kenny Thomas

since you have the calf valve you probably won't be on blood thinners like me. that kept me in hospital an extra day or two while they adjusted my INR levels. thankfully it's only for about 3 months as I have a plastic ring around my repaired valve.
plus I had a neumothorax drain put in my side post op because I had air in my chest cavity. that drain stayed in an extra day after the chest tubes came out.
so fingers crossed for you that you get out of there sooner!
Kenny

Great update, Sandy! Now that you have all those drains out you will feel tons better in a couple of days. Keep up the good work!
Kenny Thomas

You are amazing for writing so soon after surgery and with that have provided very much positive feedback for us that will have it in the near future.
Thank you Sandra. You are in my thoughts!

Hi Sandra. I too had my aortic valve replaced. It was determined to be bicuspid and leaking severely. I had my surgery on June 3, 2011. Please take a look at my journal. If you have any questions, drop me a line. Take care and God bless.

Jon Farmer

Thinking of you today, Sandy. I just got home from HUP and you are likely in surgery now.
Sending good vibes your way and I'll see you on the other side!
Much Love,
Kenny Thomas

Sandy! Good luck tomorrow! I know I just posted a response to you on my guestbook but wanted to make sure you got it.
You are going to do great! The staff here at HUPenn is awesome! Especially the nurses in the Silverstein ward. They are quality people.
Like I said in my other post, the food here is crap so send someone out for real food! There are lots of good places around the neighborhood and a Wawa right down the street.
Sorry we didn't get to meet in person but maybe you'll be in my old room! Lol
Again, all the best to you , Sandy! Keep us in the loop!
Kenny Thomas

I too have Aortic Bicuspid Valve disorder. Hoping all goes well for you. My thoughts and prayer are with you!

Hi Sandra, I too was born with bicuspid aortic heart valve. I have been monitored for over ten years. I am now at moderate stenosis and have been told the day will be sooner than later at this point. I'm praying for a quick recovery for u. The waiting seems to be so difficult. How wonderful it will feel to have a fully functioning heart. You will b in my thoughts and prayers.

Yes you can do It !!!

Matt

Good for you, Sandra. Glad to hear things are moving forward quickly for you. That waiting game is the worst. I am at Northwestern Memorial in chicago now. Surgery is tomorrow. Need to check in by 10. Finally the wait will be over. Have known for six months that I needed the surgery. Good luck as this journey continues. God bless.

Hi Sandy,
A little while ago, I was in the same position as you are.Your journey is gonna be a roller coaster ride to say the least.Do know that we here at HVJ are here for you to lean on, if you need us.Google everything and get educated as much as you can and then let the professionals take over.This procedure has an extremely high success rate and it'll be in your rear view mirror before you even know it. Best of luck to you and looking forward to your updates here.
Al Zebal AVR,Maze 1/17/13

Hi Sandy!
Kenny Thomas here. You signed mine, now I sign yours. :)
Like you, I am having my surgery at HUPenn. However I am having mitral valve repair as I have prolapse with severe regurgitation.
My story happened rather quickly. I have known about my MVP for about 10 years but I just discovered I needed surgery in early February when I had my annual echo. My surgery date is May 2nd.
My surgeon is Dr Michael Acker. He was recommended by my cardiologist. Dr. Acker goes the open heart route and is prepared to either repair the existing valve or replace with a mechanical one.
He has a 90% repair rate so I feel pretty confident that I will not need replacement.
HUPenn has a heart surgery patients guide on their website. It has lots of info about what to expect in the weeks and months ahead. Here's the link:
http://www.pennmedicine.org/heart/docs/guide-to-cardiac-surgery.pdf
Good luck to you on your consult and pre op! I'll be following along to see how you're doing!
All the best,
Kenny Thomas

I am not a doctor but each surgeon was able to give me very specific information. I considered different options and among the best surgeons/hospitals in the NYC area expert in the different techniques from less invasive mini sternotomy to open heart and felt great confidence with each of them. There is no wrong choice for me or for you. Remember to do your due diligence and you will be prepared. Surgery was not an option for me, only the type of surgery and valve used. I considered the competence of the surgeon, number of surgeries completed, evaluated number of reoperations, if any, experience in minimizing the scar over the long-term, and how long the valve would potentially last. It seemed that some other techniques could result in the need to reoperate 2 to 3 more times in my lifetime 'til age 90 or 100. And, I did not want a mechanical valve. With the Ross, I may hopefully be all set with a much lower chance of reoperation. A bonus is NO need for coumadin so I can be fully active in sports too. Blessings to you! M

You might try going to the U of Penn Heart Center website. I would think there'd be something there. Good luck.

Sandra: it's all overwhelming. Do your research on your surgeon. And then, trust in him. My cardiologist suggested three our of the area facilities. I went to work checking surgeon bios and outcomes at each facility for past years. Made my decision; May 1st we'll know if it was the correct one.

Me too. My heart too was broken and now it is better, like when I was in my 20s. In Sep 2012, I had the Ross Procedure at Mt Sinai. After research with surgeons at 4 hospitals, I accepted that open heart surgery offered my surgeons full access to my heart and lungs to replace the aortic valve with my own living tissue valve. Dr Stelzer is a kind, spiritual, genius surgeon and a super nice guy. I am 44 years old and was simply less active for many years. Now that my heart is fixed, I can do so much more physically and even wear stiletto heels with confidence. Don't worry about the scar. The truth is most people never notice and with most clothing it isn't even visible anyway. Blessings to you, M

Sandra,

Sorry to hear of your situation. If you are in great health otherwise and only 56 years old, I would consider the Ross Procedure.