Connie's Heart Valve Journal

Eric Guarin posted a note for Connie that says: Hi Connie,
Thank you for such a quick response. I really appreciate it. Since you are in the Maryland area, did you consult with any other surgeons besides Dr. Cameron? If i set up an initial consult with Dr. Cameron, what can i expect that to be like? i.e: quick 20 minute conversation, ability to ask him questions regarding his repair rates/statistics. The reason I ask is because my first surgical consult at MedStar in Washington, DC with the surgeon my cardiologist recommended didn't go as I hoped. The surgeon i talked to informed he wasn't even the surgeon that would perform the surgery, so I wasn't even able to ask any relevant questions that would put my wife and I at ease. I look forward to hearing from you. Thanks again.

Eric Guarin posted a note for Connie that says: Hello Connie,
My name is Eric and I am from Frederick, MD. I am currently looking for surgeons to perform a Mitral Valve Repair. I read that Dr. Duke Cameron was your surgeon. What did you think of him? I want to set up a surgical consult with him before scheduling a surgery. Was your initial consult a quick one or did he take some time explaining the surgery before scheduling it? Any advice would be appreciated. Thank you.

Janet posted a note for Connie that says: You'll no doubt be on an antibiotic in no time! Are you walking? Do they worry you have pneumonia?
I am finally scheduled for surgery this coming Thursday.

Janet R posted a note for Connie that says: How did
It go with the PT? Are you learning new muscle groups to use for what your arms used to do alone? Sore?
It seems so unfair to have the surgery and arthritis to, but you seem to handle it well. Considering the alternatives, we are very blessed indeed! My surgery is at St. Joseph's in Syracuse on 6/5. Wish I had thought to travel to a Mecca like JH, but I am reasonably confident in my team. Have a lovely day!

Janet R posted a note for Connie that says: In the grand scheme of things this is an amazing recovery! Keep up the good work!

Joan Rivera posted a note for Connie that says: Hi Connie , Happy to see all is going well for you. Iam contemplating Aortic valve replacement soon . I really feel so much better seeing there are others who have gone through this and came through with flying colors. I will look forward to reading your journal. and best of luck to you.Joan from New Hampshire

Beth posted a note for Connie that says: Wow. You are really doing well! So glad you are getting to enjoy this beautiful weather.

Debra posted a note for Connie that says: Keep up the great work!!! Remember... You are the princess now! You get what ever you want !! :)

Peter willard posted a note for Connie that says: Connie I will be 72 in August and I work out with light weights 6 days a week so I know you will get stronger every day and be sure to go to rehab.

Peter Willard posted a note for Connie that says: Connie what kind of valve did you get.I got a bovine valve in Feb 2010.I know you will improve every day
Best of luck
Pete

Janet Rider posted a note for Connie that says: Good to hear! I was thinking of you this evening as I cooked dinner. Are you losing weight on those shakes? PT starting already is wonderful. Hang in there-the pain won't last forever and will soon be better day by day & week by week. I have a little note to myself: "Pain is my friend- it assures me I am alive!" We'll, easy to say from this side of it. My surgery in 15 days now if I stay well. Great going, Connie!

Julia posted a note for Connie that says: Connie,

Glad to hear you went home yesterday. I am looking at Mon or Tue. You are recovering amazingly. I only feel back on line today. Thanks for sending me encouraging messages during the toughest moments.

Beth Wheat posted a note for Connie that says: So glad you will be going home. The saying " home is where the heart is" comes to mind. I would just revise it to home is where the heart heals! :-D

Janet Rider posted a note for Connie that says: I'm so amazed (and encouraged) at how lucid and active you seem already! Are you in pain? Fatigue? Love your plans for the Preakness!

Sharon posted a note for Connie that says: Hey Connie, Mike sends you best wishes. We are glad you are doing so well.

Beth Wheat posted a note for Connie that says: Dietrich is anxiously awaiting your arrival home!

Janet Rider posted a note for Connie that says: Got milkshakes?

Meredith Bray posted a note for Connie that says: I ordered cottage cheese and fruit plate for every meal. All else tasted blech. Did your first shower wipe you out? Will you be going home soon? Glad you're doing so well, keep smiling!

Deb Bialecki posted a note for Connie that says: Hey Connie!

Glad to hear you are doing so well...

Keep up the good work! :)

Annie Janey posted a note for Connie that says: Hi, Connie!
I am so glad to hear of your awesome progress after! You sound very brave–just doing what you are supposed to –Heal!! I will continue to keep up with how you are doing.

Sharon posted a note for Connie that says: Connie, I am thrilled that everything went well and that you are up and about. I love your journal.

Beth Wheat posted a note for Connie that says: Yay Connie! It's great to read your updates and to hear the progress you are making! You will be out and about in no time!

Beth posted a note for Connie that says: Yay Connie! Its wonderful to get your updates and to hear how you are progressing!

Meredith Bray posted a note for Connie that says: Hope you are up and walking around a bit. Keep breathing! And sleeping! And walking! Is your appetite back yet? (I couldn't really tell, because even on my last day the hospital food tasted like BORING. I had my family bring up food from the cafeteria. At least it was fresh!)

Take care, and keep breathing! (Also, to alleviate back pain once you get your tubes out, make sure you stand up straight, not hunched over like a heart patient!)

Janet Rider posted a note for Connie that says: You did it! Way to go! Keep up the good work of walking, eating, and breathing ( that is, coughing!). It should be better day by day.

Suzanne kosakowski posted a note for Connie that says: You sound great! Glad all is well. Saying a prayer that your recovery goes well!

Beth Wheat posted a note for Connie that says: Connie,
I am thrilled but not surprised that you are doing so well. You are strong and determined.You continue to be in my thoughts and prayers.
Beth

Meredith Bray posted a note for Connie that says: Peace. Keeping you in my prayers tonight and tomorrow. Deep breaths, rest easy, all you have to do tomorrow is show up and go to sleep!

Sharon posted a note for Connie that says: Connie, Just wanted you to know that I am thinking about you and that I believe in the miracle of both science and God.

lov67 star husband posted a note for Connie that says: hey connie

we wish you all the best debra and i

iff you neeed help just tp us lol no! seruis you in goood hand and you will be fine soon kisss

from love 67 alias claude from france

Debra posted a note for Connie that says: You have the best doctors working for you! You will be the next bionic woman!

Joeeeeeee posted a note for Connie that says: Good luck,Connie , I hope all goes well,I will be thinking of you and. Have you in my prayers.

Julia Hsu posted a note for Connie that says: Connie,

Good luck with your surgery next Monday. I am going in on 5/15. Have you decided on your valve?

Meredith Bray posted a note for Connie that says: Hi Connie! Today is my 2-month valve-iversary. You wrote something in your previous entry,
"... for the most part I mainly just feel really tired all the time and get short of breath when walking or doing something that requires some physical effort and some chest pains here and there..."

That struck a chord with me, because that is exactly how I felt. Now, I :
get up at 6 am and
eat and
go to cardiac rehab and
come home and do some housekeeping or lawn maintenance and
eat lunch and
go for a walk and
do some errands and
prepare dinner & eat when hubby gets home and
cajole him into going for another walk with me.
I'm not tired until after 9pm. This is WAY different than struggling to stay awake on the drive home from work at 4pm pre-surgery.

Your body has adapted because the changes have occurred slowly. Once you are a few weeks post-op, you'll look back and realize how much your body compensated without you even knowing.

It's great to feel "normal" again. Everything's gonna be OK, whether you finish your "to-do" lists or not.

Ernie A.S. posted a note for Connie that says: Good attitude. You're going to do great.

Vicky Jewell posted a note for Connie that says: Just want you to feel confident that I will be with you every minute they will allow. I can't possibly be as nervous and bothered by the magnitude of this as you are, but, I come in a close second. I can't imagine a better location or surgical team than you have so there is some solace in that. You have friends from all over the country praying for you. Look forward to getting better and having me nurse you back to health.
:-)

Suzanne Kosakowski posted a note for Connie that says: Glad part one one went well! Helps me to know what's ahead when I get to pre-op. Are you allowed to celebrate the evening before, I.e., a nice dinner out or do they want you to eat light? I have not even met my surgeon yet because I just learned about my dilated aorta when I went for a second opinion so my cardiologist rushed things thru. Anyway I hope to get a bovine valve because my daughter and her husband and their family run a huge dairy farm in Vermont. I'll be one with the cows!
Wishing all good things for you next week, including peace as you head into surgery!

Suzanne kosakowski posted a note for Connie that says: Hi Connie, hope your pre-op went well today!

Rob Wigley posted a note for Connie that says: Connie,
I had the EXACT same thoughts before my surgery, something like "how is this possible? I'm not really doing all that bad! Are they REALLY sure I need this? Perhaps they just know I have really great insurance....blah blah blah.." I tried my best to rationalize that it wasn't necessary, but my wife Leslie finally told me that she plans to be married to me for the next 30 plus years, and that she needs me in good health, and THAT was what I needed to hear. It WAS necessary, I WAS feeling pretty dragged out all the time, and with the aortic aneurysm.......that's the one that could sneak up on me. I could tell the past few years that I was slowing down, but I continued to do everything that I always did, and putting pressure on that aneurysm wasn't such a brilliant plan of mine.

Oh, one funny thing that I don't remember. Leslie was in the ICU with me a few hours after surgery. She told me I looked up at her, after being refused more ice (you will LOVE ice) and said, "I think this was a really bad idea......". Well, it's funny to me NOW! In reality it was an excellent idea, a necessary surgery, and though the recovery and rehab are long, we have the rest of our lives back now.......

Best to you! Don't sweat the surgery. I put some tips on my first journal post, I think, that might help.......

Peter Willard posted a note for Connie that says: Connie I had a bovine valve put in Feb 2010 being 67 at the time this was the best one for me Connie what kind of valve are you getting and no matter what you get you will be fine.
Peter

Vicky posted a note for Connie that says: It's not the same condition but having had cardiomyopathy for a number of years i do understand the fatigue. If a person has less then optimum heart function they can't help but feel it. Don't let it get to you. remember the doctor mentioned you would feel alot better post surgically.

Mark L posted a note for Connie that says: Just read your story Connie and I am sorry you have had years of not knowing the trust. I too have congental BAV and have been monitoring for several years. When my echo showed moderate to severe results in Dec, it was off to see the cardiologist. I too requested a Oct surgery but our doctors must have been communicating with each other but his response was, you are symptomatic already and Oct is 10 months out....I don't think this is a viable option for you!!! I too thought my shortness of breath and chest burning sensations when exerting myself were symptoms of getting older (54 here)....never connected the dots to the BAV....well after a plethora of various tests, poking, prodding and various emotional and psychological highs and lows, I am heading in on Tuesday....for me waiting till April would have been more trying and quite honestly, the symptoms have gotten worst in the last months so better to get it done sooner so I can be on the road to recovery sooner!! I wish you the best of luck and use this time wisely, mediate and seek spiritual solace....it is an amazing strength!!! Best regards

Tom in Kansas City posted a note for Connie that says: Connie,
While I can't relate to the mis-diagnosis, I can relate to the aorta surgery and few symptoms. I will be 57 this spring (now that I the surgery is done). The only detectable symptom I had was running out of breath at the end on a long sentence or conversation and occasionally running out of breath with heavy exertion. I knew I had BAV since birth. My cardiologist has monitored it every spring for 12 years. Echogram and CT scan with contrast to measure the size of the valve and the aorta. In May 2013 he told me to come back at 6 months due the progression. After that visit, he sent me to his preferred surgeon for the condition. A week later I had that consult and we set the date. Both the cardiologist and the surgeon highly recommended doing it before spring. So I opted to do it in December due to insurance deductibles. I am so glad it is done and out of the way. It has been 9 weeks today, I am half way one with cardio rehab (6 of 12 weeks) and back to work for a week. I will be able to do yard work in the spring and I got out of shoveling snow this season. The surgeon felt that I would have had symptoms if shoveling w/o the surgery. All in all the pain and the experience was not that bad. Mentally the worst part was being away from my work family for 8 weeks.
I highly recommend doing it as soon as you can. There is no real penalty for doing it sooner than later.
And even though I knew the severity my condition and the small risk of surgery (especially replacing the aorta), I can fully relate to the impact of hearing he surgeon tell me do it before spring or ther are no guarantees how long I could go beyond spring. A wake up call to the severity.
Hope this wasn't to long of a reply. Keep us posted of your condition prior to surgery. It was easy (and time consuming) to journal while I was home, but I'm sure I will do it less as I get busier at work. I highly recommend using this site to ask question and share concerns. We all have info and experiences to share.
Tom

Clare posted a note for Connie that says: Welcome! My diagnosis and surgery were very sudden too. I am 46 and thought I was in good health...running 7 days a week. Found out in November of 2013 that I had a bicuspid valve. Found out at the end of December that I had the aneurysm...10 days after meeting the surgeon I was in the operating room...they wouldn't let me wait longer. I am 7 weeks post op today and doing well. Open Heart Surgery is not a piece of cake but it wasn't as bad as I made it out to be. Ask if you have questions. autenclare@gmail.com