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.
Connie Jewell No, I'm fine low grade temps seemed to have gone away on their own. Guess just my body adjusting to things.
Glad to hear you have your surgery date set. You're ... Read more
Connie Jewell No, I'm fine low grade temps seemed to have gone away on their own. Guess just my body adjusting to things.
Glad to hear you have your surgery date set. You're going to do fine, my thoughts and prayers are with you, sending positive healing energy your way Janet.
Hope your surgery and hopsptial stay goes as smoothly as mine did and you'll be home and on the mend before you know it!
On May 25, 2014...
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!
Connie Jewell It went well with the PT, the arthritis does complicate things a bit, but overall I'm doing well. Only exception is I'm still running a low grade fever and ... Read more
Connie Jewell It went well with the PT, the arthritis does complicate things a bit, but overall I'm doing well. Only exception is I'm still running a low grade fever and have been more or less since I left the hospital. The nurse took blood and urine samples on Tuesday, waiting to hear back about the lab results.
On May 24, 2014...
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!
Connie Jewell Thank you Janet, I feel very lucky and blessed to be doing and feeling so well at almost 14 days post surgery .
Dr Cameron and his entire team at Johns Hopkins ... Read more
Connie Jewell Thank you Janet, I feel very lucky and blessed to be doing and feeling so well at almost 14 days post surgery .
Dr Cameron and his entire team at Johns Hopkins hospital are amazing. My nurses were all so good and beyond kind to me, they take GREAT care of you at Hopkins. It was everything I had heard and more.
On May 24, 2014...
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
Connie Jewell It's good to be the Queen!!!! Lol!! Thank you Debra, I'm doing well. My loyal subjects are taking good care of me. Lol
On May 22, 2014...
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.
Connie Jewell That's great to hear Peter!!!! You're inspiring me!! I am very fortunate to not have any other health conditions other than the bum bicuspid aortic valve. And ... Read more
Connie Jewell That's great to hear Peter!!!! You're inspiring me!! I am very fortunate to not have any other health conditions other than the bum bicuspid aortic valve. And severe osteoarthritis in my knees and a bulging disk in my lower back. I think that is helping me have a good recovery so far.
On May 22, 2014...
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
Connie Jewell I received a bovine valve as well Pete.
On May 21, 2014...
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!
Connie Jewell Thank you Janet!! The PT is due to the sevre arthritis in my knees. They are more or less shot! I've had 4 knee surgeries over the yrs. sports injuries, 3 ... Read more
Connie Jewell Thank you Janet!! The PT is due to the sevre arthritis in my knees. They are more or less shot! I've had 4 knee surgeries over the yrs. sports injuries, 3 on one knee 1 on the other. So the PT is supposed to help me learn to safely navigate things like steps. Over the past 3 yrs as my knees have gotten worse I've been using my arms to help pull me up the steps and now with the sternum healing I cannot do that, so have to learn new techniques for going up and down steps so my knees do not give out on me. Cannot afford to fall at this point not after going through all this and doing so well so far.
On May 18, 2014...
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.
Connie Jewell You're doing good Julia!!! Hang in there! It gets a little better and a little easier every day ! First night home had its little ups and downs but we worked ... Read more
Connie Jewell You're doing good Julia!!! Hang in there! It gets a little better and a little easier every day ! First night home had its little ups and downs but we worked through all of them, just take a breath and relax no matter what you'll get through it. Had my first sneeze this morning that was fun hoping to not have to do too many of them.
On May 17, 2014...
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
Connie Jewell That's a really cute revision there!! Very happy to be going home today. Lots of healing and work yet to go but at least have a really good start.
On May 16, 2014...
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!
Connie Jewell I get tired easy right now. Pain is being managed well Oxycodone I take that for arthritis so think that's why they've stayed with that drug for me. Earlier ... Read more
Connie Jewell I get tired easy right now. Pain is being managed well Oxycodone I take that for arthritis so think that's why they've stayed with that drug for me. Earlier had a pain pump with duladid and shots of toradol. But they took me off the pain pump etc yesterday doing well since they switcheded the pain in under control. Not too fuzzy in the head things are going better than I expected .
On May 16, 2014...
Sharon posted a note for Connie that says:
Hey Connie, Mike sends you best wishes. We are glad you are doing so well.
Connie Jewell You're probably right,he came home from the kennel yesterday rocking his cocker hair cut from what I hear. Just have to keep him from hurting mommy when he ... Read more
Connie Jewell You're probably right,he came home from the kennel yesterday rocking his cocker hair cut from what I hear. Just have to keep him from hurting mommy when he gets excited about me coming home and seeing me. He last saw me Sunday evening.
On May 16, 2014...
Janet Rider posted a note for Connie that says:
Got milkshakes?
Connie Jewell They gave me a milk chocolate Ensure complete over ice this morning was much better than the breakfast of French toast and bacon they sent. Just don't have ... Read more
Connie Jewell They gave me a milk chocolate Ensure complete over ice this morning was much better than the breakfast of French toast and bacon they sent. Just don't have an appetite to speak of , I hear this is common and nothing to be concerned about
On May 15, 2014...
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!
Connie Jewell I'll have to remember and try the cottage cheese and fruit plate nothing else is appealing, just don't have an appetite at all! Coffee here is dreadful!!! Lol, ... Read more
Connie Jewell I'll have to remember and try the cottage cheese and fruit plate nothing else is appealing, just don't have an appetite at all! Coffee here is dreadful!!! Lol, never had any this bad in my life!!! No somehow did not get my shower this afternoon/evening :-(. so I guess I'll get that tomorrow , feeling pretty good otherwise have a bit of a whizIng going on I do have asthma and this is about what I sound like when I get a bad chest cold or respiratory thing in the winter. They are still telling me I'm doing amazing, considering just had this done Monday morning .still targeting
Saturday discharge date. So that's good !!! Home is alway better. Weight the same I did at pre-op visit when I was fully dressed on May 2nd so that's good not holding fluid . So still pretty good all and all, thanks for asking Meredeth. Hope you're still doing well in your recovery.
On May 15, 2014...
Deb Bialecki posted a note for Connie that says:
Hey Connie!
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.
Connie Jewell Thank you. They say I'm doing really well. Looking forward to getting a shower today. I'm supposed to do 2 more physical therapy walks up and down the hall later today.
On May 15, 2014...
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!
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!)
Connie Jewell Connie says in response,
"Yeah I haven't had much of an appetite lets just say my favorite thing on every tray has been the apple juice. So... Kind of tells ... Read more
Connie Jewell Connie says in response,
"Yeah I haven't had much of an appetite lets just say my favorite thing on every tray has been the apple juice. So... Kind of tells you were that's at, lol when the highlight of your day is Apple juice."
On May 14, 2014...
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.
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!
Connie Jewell Thank you Meredith! Trying to remember that all I have to do tomorrow is be there by 5:15am and after that it's out if my control. As you said all I have to ... Read more
Connie Jewell Thank you Meredith! Trying to remember that all I have to do tomorrow is be there by 5:15am and after that it's out if my control. As you said all I have to do is go to sleep. After tomorrow it's all up hill, little by little getting better small improvements all add up complete recovery in time.
Hope you're doing well. Hope to soon feel that improvement in energy level you now have. And not feel so exhausted all the time.
On May 9, 2014...
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.
Vicky will be updating my journal on Monday once I'm out of surgery and probably a few more times early in the week until I feel well enough to do it myself.
On May 8, 2014...
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
Connie Jewell Thank you Julia for your well wishes and the same from me to you on May 15th.
I'm leaning toward the bovine replacement valve Julia, how about you?
On May 5, 2014...
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.
Connie Jewell Wow you described how I have felt for probably the last 12-18 months. It seemed no matter how much sleep I got, I'd fight falling asleep after 2 in the afternoon ... Read more
Connie Jewell Wow you described how I have felt for probably the last 12-18 months. It seemed no matter how much sleep I got, I'd fight falling asleep after 2 in the afternoon more or less. And as you mentioned constantly fighting to stay awake on the drive home at 4pm. Then once I sit down in the evening nodding out and sleeping off and on until around 8pm. Also for the past 4 months I have struggled to get up with my 5:45am alarm I hit the snooze sometimes until 6:30 then drag myself out the door for work.
I hope to have the level of results that you have when I'm 2 months post opt. Thank for sharing this with me. You give me great hope for feeling so much better post op!!!
On May 5, 2014...
Ernie A.S. posted a note for Connie that says:
Good attitude. You're going to do great.
Connie Jewell Thank you very much Ernie! I hope you're right!!!
I suppose having heart valve surgery is a bit like bungee jumping, in that you just have to take a deep ... Read more
Connie Jewell Thank you very much Ernie! I hope you're right!!!
I suppose having heart valve surgery is a bit like bungee jumping, in that you just have to take a deep breath, close your eyes let go and take a huge leap of faith. And trust in your surgeon and surgical team with your life.
On May 5, 2014...
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.
:-)
Connie Jewell Thank you sweetheart, look forward to seeing you on the other side of this.
Waking up with you there by my hospital bed will make the pain and struggles of ... Read more
Connie Jewell Thank you sweetheart, look forward to seeing you on the other side of this.
Waking up with you there by my hospital bed will make the pain and struggles of those first few hours and days of recovery a whole lot more tolerable I'm sure!!!!!
On May 4, 2014...
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!
Connie Jewell As far as I know I can have anything l like the night before just as long as I do not intake anything solid or liquid after midnight. So I intend to have ... Read more
Connie Jewell As far as I know I can have anything l like the night before just as long as I do not intake anything solid or liquid after midnight. So I intend to have a good meal of some kind on Sunday, unfortunately it will be the most busy restaurant day of the yr. Mother's Day, so I need to decide and make a reservation I suppose. Thank you for your well wishes, wish the same for you, as I said we're a few days apart on surgery we can keep each other company as we heal and progress.
On May 2, 2014...
Suzanne kosakowski posted a note for Connie that says:
Hi Connie, hope your pre-op went well today!
Connie Jewell Thank you Suzanne, everything seemed to go well. I had all the standard tests for this type surgery each in a different area of an 8fl out patient building ... Read more
Connie Jewell Thank you Suzanne, everything seemed to go well. I had all the standard tests for this type surgery each in a different area of an 8fl out patient building at Johns Hopkins Hospital I got a work out, I had to go to 4 different fls. of the building. I also had a mini consult discussing in more detail about the valve types and got to see a bovine one in a jar preserved so have a better idea what one looks like now. As well as I was able to see and handle a segment of the Dacron Graft material that will replace the segment of my aorta to repair the aneurysm. Got my spirometer and the 2% Chlourhexidine Gluconate (CHG) packages of wipes to use to pre my skin the night before and morning of surgery. And one of the Dr's on Dr. Cameron's team explained how the day of surgery would proceed for me as well as for my spouse and what unit's and fls. I'd be on in the hospital and that Dr. Cameron's part of the surgery lasts about four hrs. but with prep and post/recovery room time it will be closer to a 6 hr. procedure and around that time I then will be moved to ICU.Also that my spouse will be able to track my progress via TV monitor in the waiting area via an assigned tracking number and that the Dr. will call her at 3 intervals during the 6 hrs. So they will keep her well informed.
So all and all went very well took about 3hrs. total. So basically as long as all the labs are good everything will proceed at 5:15am May 12th. I wish you luck with your pre-op work when you have to go.
On March 29, 2014...
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
Connie Jewell Peter, my Dr has given me a choice of either, bovine,mechanical or the Ross Procedure. In a way another thing that makes this difficult having to make such ... Read more
Connie Jewell Peter, my Dr has given me a choice of either, bovine,mechanical or the Ross Procedure. In a way another thing that makes this difficult having to make such a huge choice not having ever experienced OHS. I will turn 53 this coming week. At the moment I'm leaning toward the bovine.
On March 28, 2014...
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
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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.