Adam Pick Hey Karin, Welcome to the "other" side! My goodness. Your incision is teenie-tiny. How are you feeling?
Karin Georgeson It sure is. And my surgeon did an aortic valve replacement and aortic root enlargement through there. Pretty cool.
Susan Lynn Looking great, Karin! Wishing you a speedy recovery!
Phil Wutz Everybody heals differently but I also had a mini-sternotomy for my AVR. I had a pretty big lump at the top of the incision but over time, the whole thing flattened ... Read more
Phil Wutz Everybody heals differently but I also had a mini-sternotomy for my AVR. I had a pretty big lump at the top of the incision but over time, the whole thing flattened right out (just like the Dr. said it would). You can still see my scar but its not very apparent. Yours will look good as well with time. I had my AVR two years ago in December.
Rob Sparling Pretty soon they will be able to do heart surgery from outside the body. No? Well, I thought I read that somewhere. ;)
My husband washing my hair with this dry shampoo cap. He thought it was funny...
Susan Lynn You've got to love when the husbands try to lighten the mood!! Where would we be without them???
4 weeks and 5 days out
Journal posted on March 24, 2020
My AVR was 4 weeks and 5 days ago. I’m doing well. I walk a mile or a little less twice a day, and do at home exercises 2-3 times a day, sometimes with 1.5 pound weights. I have taken about 10,000 steps per day the past week. I’m still being careful of my sternum, and I get tired and need rest. The meds that keep my heart rate and BP slower make it hard, so I look forward to being off that in a couple months. I had a ministernotomy, but I still have pain and take Tylenol 3 times a day. It feels normal, except I do have one place lower right of my incision that is extra painful and more sharp, and isn’t improving yet. I worry a little about it, but I think it’s likely from where the incision was pulled apart. I know it takes time for the muscles and nerves to heal around that area, and it’s still early. I worry about those wires I assume are in there (I forgot to ask). Overall I wanted to report I’m doing great and can do a lot of things. If you’re facing surgery, you can do this, I promise. If you experienced that sharper pain in one spot, I’d love to hear from you to see if that’s kind of normal. My surgeon at 4 weeks said it takes time. Take care,
Adam Pick Awesome update. My gut is telling me that pain in the lower-right section of your incision will fade. You've been through a lot. Keep it up!!!
Frank Giovanniello Karin, sounds like your doing above normal recovery. Keep it up!!!
I made it!
Journal posted on February 27, 2020
I made it! One week ago today I had my aortic valve replaced with a bovine valve and an aortic root enlargement to put on a larger valve, and all done through a mini sternotomy. It wasn’t easy in the hospital, but I’m home now and one day at a time. I hope over the next weeks I can give good and positive advice, feedback, and thoughts to those going into and coming out of surgery as well. Thank you everyone for the kind words and support.
Arlene VanNorstrand Glad to hear you are home and you are well on the road to recovery. It is hard in the beginning but our bodies can do amazing things. I will be six weeks ... Read more
Arlene VanNorstrand Glad to hear you are home and you are well on the road to recovery. It is hard in the beginning but our bodies can do amazing things. I will be six weeks post op tomorrow and I am feeling great. I would love to sleep a little better but overall a good steady recovery. I actually forget sometimes I had surgery now that I feel so much better. You will get there.
Lisa Baine Yes!!! You are going to do well!! I’m so glad to hear your positive attitude!! I wish you nothing but a speedy recovery and good health ❤️ Keep us updated!!
Jo Orsini It’s great to hear your strength & positivity just one week after. My surgery date is March 16 & it’s so encouraging to hear these positive posts....All ... Read more
Jo Orsini It’s great to hear your strength & positivity just one week after. My surgery date is March 16 & it’s so encouraging to hear these positive posts....All the best with your continued recovery & getting back to doing all the things you love to do! Every day is one day closer to a healed & healthy heart. ❤️
Mike Tirrell Awesome! Best wishes on your recovery.
Skipper Kagamaster Almost there; you got this!
"The Lord bless you
and keep you;
the Lord make his face shine on you
and be gracious to you;
the Lord turn his face toward you
and give you peace.”
Jennifer Winslow You got this. A lot of recovery is mental attitude and sounds like you are on the positive side! Prayers
Tracy Fallu You got this! Soon you will have a relieved feeling knowing you have picked an incredible surgical team. The amazing anesthetist will have you count from 10 ... Read more
Tracy Fallu You got this! Soon you will have a relieved feeling knowing you have picked an incredible surgical team. The amazing anesthetist will have you count from 10 and the next thing you know you’ll be on the other side. Bless you the next couple of days.
Karin Georgeson Thank you so much. I love the prayers, positivity, and great advice.
Jim Wilson You got this....Before you know it you will be up walking and ready for discharge and hitting the road to recovery! We will all be thinking and praying for you!
keith WALDMANN good luck and my prayers are with you as you undergo a big operation that will improve your life no doubt about that I'm 5 days post op and doing well....remember ... Read more
keith WALDMANN good luck and my prayers are with you as you undergo a big operation that will improve your life no doubt about that I'm 5 days post op and doing well....remember its a marathon not a sprint...You need everybody on board ...husband, kids , mom and dad and good friends they are all important to a successful recovery....you will gain about 15-20lbs from surgery due to keeping you hemodynaically stable they will use lasik to remove fluid over several days ....and use will use the bathroom on day 5 I promised you!
Mike Roskowinski You got this Karin. You will be on the recovery side soon and ready to get back to life.
Hello. I had an interesting second opinion today I thought was worth sharing. I was scheduled for aortic valve replacement on January 23, full sternotomy with a bovine valve. I was all set, prepared mentally and physically, at work, and at home. I did not want to put it off any longer. However, after doing a lot of research here and otherwise, I was feeling like I had not done due diligence in seeing if I was a candidate for the ministernotomy as a first time isolated aortic valve patient. My surgeon said he did not do that surgery, but referred me to his partner who does. I met him today and had a completely different experience. He said he will start with the mini always for those who are candidates, but will switch to full if necessary. He said no additional risks as he will make that decision early and before I am on the machine too long. He felt both the full and mini were very similar, with the mini maybe having a little less pain and better recovery but same restrictions. However, he did say he was less concerned about that and more concerned about the size of my valve and future surgeries (This surgeon is a part of the TAVR team of doctors at my hospital. Both surgeons felt I was not a good candidate for TAVR now at age 48 because it slips inside the old valve and will likely last 10 or less years at my age, making 2-3 more TAVRS unlikely). This doctor said it is important I do a replacement now that will set me up for a TAVR in the future because my bovine valve will only last about 10 years because of my age. He said my valve measures 19mm which is the smallest valve they can replace. If I just replace it with a 19mm valve now, it might be too small to fit even one TAVR valve inside, not to mention 2 or 3. He suggested a possible aortic root enlargement procedure and putting a 21-23mm valve in so I can ensure there is enough room for a TAVR in 10 and 20 years or more. Interesting the first surgeon didn't mention any of that.
So I changed my date to accommodate his schedule to February 20th, which is a big bummer, but what is 5 weeks to prepare for the next 30 I guess. In the end, this new surgeon will do the mini if he can, but full if he has to, do an aortic root enlargement if he needs to, but won't if he doesn't. Keeping my options open. This instead of just the full sternotomy with my current size valve no matter what that I had planned.
Just thought I would share as I have not seen much info on re-surgeries being shared. I learned that it is good to get a second opinion not just to talk about options now, but about how what I do now affects what I can do later.
Jennifer Winslow I’m glad you got that second opinion and are happy with your decision. Do something fun while you wait
Frank Giovanniello Karin, wow, I feel totally dumb on that. I had Bypass surgery. Plain and simple. Blockage - Re pipe. Valve surgery is really scary and complicated. It sounds ... Read more
Frank Giovanniello Karin, wow, I feel totally dumb on that. I had Bypass surgery. Plain and simple. Blockage - Re pipe. Valve surgery is really scary and complicated. It sounds like your in really good hands. Prayers for you.
Mike Tirrell Great News Karin. It sounds getting referred to this new surgeon was a good move. Thanks for sharing.
Willie Radl I had the mini but with a Mech. and it went well. I can't say how it compare to the full Stern but I think the healing time was probably a bit better. I also ... Read more
Willie Radl I had the mini but with a Mech. and it went well. I can't say how it compare to the full Stern but I think the healing time was probably a bit better. I also inquired about the bovine valve with TAVR down the road but being 32, my Dr. also raised concerns about multiple TAVRs needed and narrowing of the valve size with each TAVR. He thought at my age even with a Bovine valve they would recommend doing a second OHS to replace the valve and maintain the valve size and not restrict "flow". Glad to hear you got the 2nd opinion and have a good plan moving forward. I presume valve technology, especially TAVR technology, will continue to advance and hopefully when you need a replacement there will be a good solution. Wishing you a speedy recovery!
Karin Georgeson Willie, these are the exact concerns we discussed. I’m about 16 years ahead of you so he thought we could do the bovine, but it’s definitely a concern with ... Read more
Karin Georgeson Willie, these are the exact concerns we discussed. I’m about 16 years ahead of you so he thought we could do the bovine, but it’s definitely a concern with the multiple TAVRS. Thanks for sharing. I’ve still got the mechanics in the back of me mind. How’s it going on the blood thinners?
Update posted on...
December 23, 2019
Hello everyone. I've been following this blog for over 8 years, since I found out I had a bicuspid valve and aortic stenosis. I've been in awe of your strength, and so thankful for the information and encouragement. My valve replacement is scheduled for January 23, 2020. I'm nervous. Is it the right time? What valve should I choose? Which procedure, surgeon, etc. I'm trying to make educated decisions, and trust in God's peace and understanding. My surgeon does not recommend TAVR with my bicuspid valve and younger age (48). He feels the best way for me is full sternotomy with a bovine valve, or mechanical valve if I'm ok with the blood thinners. I wonder sometimes if the surgeons recommend what they feel like they do best? I'm mostly afraid of the recovery. Also scaring my family (husband and 3 kids). There's a lot to think about and do over this next month. Wish me luck! Merry Christmas everyone.
Jennifer Winslow Hi Karin! I wish you the best with your decisions and your surgery!!! I will be following your journey as I feel we are pretty similar. I am 53 and have been ... Read more
Jennifer Winslow Hi Karin! I wish you the best with your decisions and your surgery!!! I will be following your journey as I feel we are pretty similar. I am 53 and have been told it is time. I was hoping to have TAVR as the thoughts of open heart surgery just freak me out! I haven't been sent to a surgeon yet as my cardiologist wanted to do a TEE first just to confirm. I had this same scenario happen 12 years ago and the numbers from the TEE weren't as bad as the regular echo so we have been in a holding pattern. This time all my numbers are worse. I know it is very stressful and intimidating trying to decide what surgery, what type of valve, etc. I pray that somewhere we both find the wisdom and strength to do what is best for us.
sending good thoughts....Jen
Mike Tirrell Hi Karin (and Jennifer) - I am in a similar situation as you have been it seems. I am 42 years old, found out about my bicuspid valve and moderate stenosis ... Read more
Mike Tirrell Hi Karin (and Jennifer) - I am in a similar situation as you have been it seems. I am 42 years old, found out about my bicuspid valve and moderate stenosis at 40. I am watching and waiting, and hoping that TAVR some day might be an option for me. A question for you both, as you have been following your valves for many years, how many years were you in each phase (mild, moderate)? Also, Karin, a question for you, is there a reason your doctor thinks a full sternotomy is the best approach as compared to either a mini sternotomy or a mini thoracotomy? I've read a fair amount about the various options but am not sure what the criteria are to choose one over the other. In either event, best of luck on your upcoming surgery.
Jennifer Winslow Hi Mike! I'm afraid my doctor never qualified as such for me so I'm not sure how long I was in each phase. I would say I've been moderate for the last 12 ... Read more
Jennifer Winslow Hi Mike! I'm afraid my doctor never qualified as such for me so I'm not sure how long I was in each phase. I would say I've been moderate for the last 12 years??? When I went two weeks ago, he said he had never heard my murmur in my back but he could now. So now severe??? I'm really just guessing. I really need to do a lot more reading up on all this. I've been trying to research but just keep reading the same info just regurgitated a different way!
Mike Tirrell Thanks Jennifer, I agree, I've read so much online that it seems like its all the same at this point. Happy Holidays and best wishes.
Chris Calhoun if you are 48 years old go Mechanical - or you could be doing it again
Beth Majerszky Hi Karin - we are very similar in that I too have a bicuspid aortic valve with stenosis. We’ve been watching my valve for about 7 years or so, and over this ... Read more
Beth Majerszky Hi Karin - we are very similar in that I too have a bicuspid aortic valve with stenosis. We’ve been watching my valve for about 7 years or so, and over this last year, my numbers got to the point of concern and I started to experience breathlessness after climbing stairs. I had no other symptoms until that point.
I agree that the decision about which procedure is overwhelming. What was incredibly helpful for me was actually seeing the various valves in the surgeons office. I had a visceral reaction to one of the options, and knew immediately that it wasn’t for me.
I was approved for a mini sternotomy after the angiogram showed no significant artery blockages.
I was fortunate to have the opportunity to meet with both a TAVR surgeon specialist and an OHS specialist. Being able to hear both perspectives helped in making my decision.
Trust your gut (and heart), knowing you’ll make the rught decision for you. And ask as many questions as you need to.
You’ve got this!
Karin Georgeson Hi. Sorry for the delay in responding. I thought I might get notification of comments so I forgot to check. I'll keep a closer eye on it now, and answer some ... Read more
Karin Georgeson Hi. Sorry for the delay in responding. I thought I might get notification of comments so I forgot to check. I'll keep a closer eye on it now, and answer some of the questions you asked. I have been monitoring for about 8 years. My echos very slowly moved from moderate to severe, and most of the time they called it moderate to severe stenosis from the start because I was always right on the edge. My first echo in about 2012 had an AVA of .9 with a mean gradient around 28 and velocity in the low 3's. Other echos showed 1.0, 1.1, .9 AVA but the gradients slowly went up, as well as the velocity. My last echo showed .8 AVA with 38 mean gradient and 3.94 velocity. Still on the edge. My two cardiac caths showed a much bigger AVA, 1.4 and 1.2. My cardiologist ordered a stress test, and she didn't like that my blood pressure dropped. My surgeon said in the end it's how I feel that matters, and I do get chest pain/pressure and shortness of breath just doing my normal activities. I am pretty active; I teach PE grades K-8, I used to play soccer but had to stop, and I have coached my kids over the years. I find myself needing to recover from overdoing it a lot now, and from normal activity for me. Still, I stress about doing it too soon. I can wait. I'm planning to go ahead with it and see if I can get my life back a bit. I'd love to hike and bike with my husband again, play soccer with my kids, and enjoy my job and my 50's. When I met with the surgeon he went right to suggesting the sternotomy. When I asked about TAVR he said he didn't like the valve itself for my age, activity level, and bicuspid valve. He thought it would only last me 5-6 years, and said it had to be less durable to fit through the artery. Also he said because the TAVR valve slips inside the old valve, when I need to replace the valve in the future it would need to slip inside the other two, and so on. He thought eventually that would take away that option for the future (obviously he didn't want to do the TAVR). I asked him about the mini-sternonomy and frankly, he didn't say much about it. In my opinion, he feels most comfortable with the success of the full sternotomy and that is what he specializes in. I think from his perspective, the full sternotomy is the safest and most successful way to do it, and he probably doesn't think that much about my recovery in the same way I would. I've thought about pushing for it, but I am considering whether it's just me being afraid of the surgery so I want to push for it to be easier, or if I really think it would be better. I spoke to my brother who watched his father-in -law go through it. He said he was happy I am doing it this way. Tried and true. But I certainly get that there are new and just as viable options out there so I suffer less. As far as valve, I'm leaning toward the bovine. I don't want to deal with the blood thinners, even though so many say it's not a problem at all. Then maybe TAVR in the future. Still deciding on that. Thanks everyone for the responses. So happy to be here.
Jennifer Winslow I am petrified of open heart surgery so was really leaning towards TAVR. But the idea of being on blood thinners the rest of my life scares me too. Just wish ... Read more
Jennifer Winslow I am petrified of open heart surgery so was really leaning towards TAVR. But the idea of being on blood thinners the rest of my life scares me too. Just wish there was a win win option and pros and cons of each.
Karin Georgeson Jennifer, I think it is very normal be be afraid. Once you do all your work and know what is in store for you, you will be able to find peace in the process. ... Read more
Karin Georgeson Jennifer, I think it is very normal be be afraid. Once you do all your work and know what is in store for you, you will be able to find peace in the process. We are all so much stronger than we give ourselves credit for. Last night I was researching bras to order for post surgery. I started to get super scared with all the comments all over the internet. Then I remembered they are not me, and I have control over my own experience, intentions, and recovery. I pray for strength and peace in those moments, and God gives it to me. Hang in there. We got this. 3 weeks out for me.
Kaiser
Journal posted on September 28, 2017
Hello. Has anyone had any experience with Kaiser? Specifically I am wondering if anyone has had valve replacement there, was the experience positive, and did/do you have a good relationship with your cardiologist? Thank you so much.
Clayton Mcarthur I don't believe the name of the hospital is as important as how much experience do they have with valve surgery aortic valve surgery is not the most sophisticated ... Read more
Clayton Mcarthur I don't believe the name of the hospital is as important as how much experience do they have with valve surgery aortic valve surgery is not the most sophisticated heart surgery and the new techniques make it very doable and much easier to recover just be sure you deal with a cardiothoracic surgeon that you are comfortable with he's the man that makes all the difference
Steve Farthing Kaiser has many locations in various states and good patient reviews.
Janet Johnson Hi Karin,
I see that you live in Rocklin., CA. I don't have experience with Kaiser, but I had mitral valve repair surgery at Mercy General Hispital in Sacramento. ... Read more
Janet Johnson Hi Karin,
I see that you live in Rocklin., CA. I don't have experience with Kaiser, but I had mitral valve repair surgery at Mercy General Hispital in Sacramento. My cardiologist is Dr. Kozina and he is AWESOME! He is very very understanding and caring. My surgeon was Dr. Alien Morris, who is the head of the Cardiology unit. He is AWESOME too and has over 30 years of experience. My entire surgery experience at Metcy Hospital was perfect!!!! I was very blessed to have some of the best doctors in Northern CA. The days and months leading up to heart surgery can be very stressful and you want to have doctors who you are very comfortable with. While I was in the hospital, the staff told me that Kaiser doctors perform many heart surgeries at Mercy General Hospital at 39th and J streets in Sacramento. Kaiser contracts with Mercy to use their operating rooms and equipment. I'm not sure what percentage of Kaiser's heart operations are done at Mercy. If you have a good primary care physician, ask him which Kaiser doctors he would recommend. Research the doctors on the Internet and see what patients say about them. I hope this little bit of info helps!
Karin Georgeson Thank you so much all of you. That does help. I wondered if Kaiser did their surgeries at Sutter or Mercy as well. I see one of the surgeons do both. Kaiser ... Read more
Karin Georgeson Thank you so much all of you. That does help. I wondered if Kaiser did their surgeries at Sutter or Mercy as well. I see one of the surgeons do both. Kaiser health insurance requires you to use their specific doctors and hospitals so my main concern was whether or not people have had good experiences there. Thanks again.
Still Waiting
Journal posted on March 24, 2017
It's been a long time since I've checked-in on my journal. I apologize to anyone who left me a message with no response. I have been trying to move on with life and not think about this impending surgery. I continued to take care of my family, I fulfilled a dream and published a fiction novel, and have recently gone back to work part-time after almost 14 years at home with my kids. My valve (AVA) still measures around 1.1 in my echoes with some chest pain and shortness of breath, but I am ignoring most symptoms until something obvious rears it's ugly head. I'll be 46 in July, two years after I was 8 days away from surgery, and my cardiologist tells me I won't make it out of my 40's with this valve. I wonder though. Love all your posts and thank you for sharing. When It's my turn I will be well prepared, and will return the favor. Take care everyone.
Steve Farthing Sounds like you are too scared to show up for the recommended surgery? Very understandable. Hopefully you will figure it out before your valve fails. What would it take to make it doable?
Jason Day Karin glad your doing well. A measurement of 1.1cm should be large enough not to have symptoms, I thought that .7 is generally where people start experiencing.
Steven A Husted if you are not having any symptoms i think i would try to hold on as long as possible but you are taking a chance i know 6 months made a big difference in my ... Read more
Steven A Husted if you are not having any symptoms i think i would try to hold on as long as possible but you are taking a chance i know 6 months made a big difference in my breathing i got to the point where i could not do nothing with out getting out of breath and the doctor sent me to the hospital right away and 3 or 4 days later i had a new bovine aortic heart valve now i look back on it and maybe i should have had it done sooner but now i am feeling good and going to cardio rehab phase 3 twice a week and enjoying it
Civita Fahey I think the size of the valves and symptoms depends on the size of the person.. I have a 1.0 opening as of last echo in october and Im 5'4.. i'm experiences ... Read more
Civita Fahey I think the size of the valves and symptoms depends on the size of the person.. I have a 1.0 opening as of last echo in october and Im 5'4.. i'm experiences mild symptoms and will have surgery next month..at 1..1 i had no symptoms but my cardiologist said if I were 5'10 or so it would be considered severe stenosis as opposed to moderate..I think we all need to come to terms this in our own way.. keep an eye on how you feel, your body will let you know
Sue Sanchez Grela Karin, I am in Sacramento, 63, had my surgery on March 1, and am doing very well. I had the same diagnosis as you and was told valve replacement would be needed ... Read more
Sue Sanchez Grela Karin, I am in Sacramento, 63, had my surgery on March 1, and am doing very well. I had the same diagnosis as you and was told valve replacement would be needed within 3 - 5 years. I was at severe December 2015 and in September 2016 there was quite a bit of progression. I changed my medical group from UCD Davis to Mercy Medical Group as the Alex G Spanos Heart and Vascular Center is nationally known. My surgeon, Dr. Frank Slachman completed my surgery in 3.5 hours and my hospital stay and care was wonderful. All the rooms are private and family friendly. My only challenge has been the expected fatigue and not doing more than I should during my recovery.
When it is time for another replacement or repair, it will be a TAVR.
You can Google the Mercy Medical Group and their surgeons for all their information. As soon as I received my surgeon's name I Googled him and learned he had climbed all the 7 highest mountains of the world! I was impressed and happy to learn about him personally as well as professionally.
I will keep you and your family in my prayers! ❤
Barbara Wood Generally if you're symptomatic they like to " get it done" I signed up on this site when I first found out I'd be facing surgery, read a few journals, chickened ... Read more
Barbara Wood Generally if you're symptomatic they like to " get it done" I signed up on this site when I first found out I'd be facing surgery, read a few journals, chickened out & stayed away for a long time. Then I came back a few months ago, read more journals & slowly found myself prepared to face it. It's a process, it takes some doing to get comfortable with it. Glad you're back, I think coming here will bring you some clarity.
Bob Jensen We have all been through this anxiety. We all understand exactly what you're going through. The reality is just once the surgery is done you will feel like ... Read more
Bob Jensen We have all been through this anxiety. We all understand exactly what you're going through. The reality is just once the surgery is done you will feel like a new person even in recovery. My advice get ready for New You
Karin Georgeson Thanks everyone for the feedback! All of these posts are so helpful. I was sort of waiting for my cardiologist to tell me its time or my numbers to change, ... Read more
Karin Georgeson Thanks everyone for the feedback! All of these posts are so helpful. I was sort of waiting for my cardiologist to tell me its time or my numbers to change, but maybe I should think about pulling the trigger on my own. Lots to consider.
Karin Georgeson Also, Beth, what valve did you decide you did not want?
Surgery postponed
Journal posted on July 9, 2015
Had my cath yesterday and the numbers came back with 1.4 measurement. Strange because all 4 echoes show .9 or 1.0. After preparing for months to have surgery on July 22 we are now postponing and monitoring until another echo in October. I'm a little happy but mostly bummed as I was so ready to be done and on the road to feeling better. Strange there was such a discrepancy. Anyone ever see that before?
Karin Georgeson Aortic valve area are the numbers I mentioned.
Sharon Madden Exact thing happened to me. I finally had my surgery June 2 after an 18 month reprieve. Details are in my Journal. Enjoy your reprieve and make sure to get your rechecks on time.
Tammy Pilcher So sorry this happened, Karin. Prayers and best wishes for you! God bless!
Ray Lockhart Numbers for the area can vary depending on whether the valve opening is visualized or calculated by formula based on flow. My waiting time was 13 years. Enjoy your wait :)
Karin Georgeson Thank you! Sharon I was so happy to read your story and see I am not the first one to have that happen. Just going to keep moving forward. Best to all of you.
Time to make some choices and schedule surgery
Journal posted on March 15, 2015
It's been a great year of reading all of your stories and following your journeys. I see such love and support from all of you for each other. I hope you know how amazing you all are.
I was originally told I will need heart valve surgery in 8-10 years (two years ago). That has now changed and I have been told that it's time to schedule my aortic valve replacement. The good news is that as long as my symptoms do not worsen I was given a window to decide when it would be a good time for my family to have it done. I have chosen July and my first "staging" appointment is July 6th. I am not sure exactly what will happen between July 6th and my actual surgery, but I was told I don't need to do anything except research and make choices about which valve I want and location/surgeons in my area.
It's all pretty scary but reading what all of you have to say has been a great help. I will be 44 years old in July and am married with two boys age 8 and 13. I know I want to be around for a long time to see them grow and start their own families, so I want to choose the valve and procedure that has the best long-term prognosis for me. Right now I am leaning toward the St. Jude mechanical valve as I would like to become active again post surgery and it seems like the best option. However, I am scared of the blood thinner and it's implications. I see the procedure Adam had and wonder if that is an option for me too.
In June we have a trip to Hawaii planned that I would like to take before surgery. I read Adam's book and his pre-surgery trip makes me question that decision, but I do feel God's will is at work in my life and I will know by then if I should go.
So much to think about. Take care everyone and I hope to share by surgical journey (and anything else worthwhile) to those who can benefit.
Penny Prichard I don't know if you have a surgeon picked out yet, but I see you are from Northern California, you might want to talk to Dr Luis Castro at Sequoia in Redwood ... Read more
Penny Prichard I don't know if you have a surgeon picked out yet, but I see you are from Northern California, you might want to talk to Dr Luis Castro at Sequoia in Redwood City. He is known to do fantastic work and has a wonderful compassionate manner about him. He's doing my mitral repair this week.
Karin Georgeson Hi Penny. I have seen that name a lot. I live in Sacramento which is only about 2 hours from Redwood City. I have been trying to decide if it's worth checking ... Read more
Karin Georgeson Hi Penny. I have seen that name a lot. I live in Sacramento which is only about 2 hours from Redwood City. I have been trying to decide if it's worth checking out or if I would rather stay closer to home. Thank you so much for your input. I would love the opportunity to Compare Sequoia to Sutter Sacramento.
Nancy D I know a lady in her 30's who has had a mechanical valve(not sure which one) since high school. She is active, and has had no difficulties managing her blood ... Read more
Nancy D I know a lady in her 30's who has had a mechanical valve(not sure which one) since high school. She is active, and has had no difficulties managing her blood thinners all this time. She does go to the labs, but did mention to me that there are home monitoring devices that enable you to test and report results to you Dr. Not sure if your insurance would help you with that machine with a Dr order or not, but it does make one aspect of monitoring easier. Good luck with your decisions and planning. Take good care!
Penny Prichard I did compare and I would choose Sequoia. I'm having surgery on Thursday. They have a new cardiac pavilion. Check out Dr Castro, he's the surgeon of the month ... Read more
Penny Prichard I did compare and I would choose Sequoia. I'm having surgery on Thursday. They have a new cardiac pavilion. Check out Dr Castro, he's the surgeon of the month on this site. It will always be who you are comfortable with. Another person on this site said he had checked out Dr Kincaid who is very good too near you. I live in Oroville ca but worked for years at Sequoia as a nurse years ago.
Jen Huff Hi Karin- I had the Ross Procedure like Adam 2 weeks ago and am doing great. I had the surgery at Mt. Sinai in NYC by Dr. Stelzer. I know that is far from you ... Read more
Jen Huff Hi Karin- I had the Ross Procedure like Adam 2 weeks ago and am doing great. I had the surgery at Mt. Sinai in NYC by Dr. Stelzer. I know that is far from you but if you gave any questions on the procedure let me know! I am 31 years old and very active - running and weight lifting.
Karin Georgeson Thanks for all the input and advice. Awesome!
Figuring Things Out
Journal posted on January 22, 2014
I have been reading all of your amazing stories, and learning so much from all of you. I see that a lot of you are very active and play various sports, run, bike, and much more. I try to read closely to see what your exact diagnoses's are and how you are able to keep exercising strenuously right up until it is time for surgery. I see so many positive attitudes and how many of you will not give in to these heart diseases, keeping at your active lives and staying in shape. I want to be that way too, but I am struggling with some things.
I am wondering how some of you are still able to exercise strenuously with these various heart valve problems? When I was diagnosed last spring I was told that even though my bicuspid aortic valve was considered moderate or moderately severe (.9), that I should stop exercising strenuously due to risk of congestive heart failure or other damage to my heart. I was told I really should not be running at all. Since my main form of exercise was playing competitive soccer, softball, roller blading, and these kinds of activities my understanding has been that I need to change. That has been difficult as I find myself getting bored with or put off walking, and then consequently don't exercise at all. I have gone from frequent strenuous exercise to almost nothing (coaching soccer and a few walks a week). I can feel my body getting weaker and I feel less healthy.
My question is this. Has anyone else been told not to exercise strenuously even though surgery could be a long ways away? Do any of you just do it anyway, watching for symptoms and being careful? Have any of you found ways to exercise and stay healthy while not lifting weights and running? I know there is yoga and other great activities that are not strenuous, but I admit I am struggling to form an attachment to any that motivate me to get out there and do it. Not exercising enough is really starting to effect my strength, motivation, and energy level, but I want to follow my doctors orders so I am here for my family in the long run.
I would love any feedback you might have on this subject. I want to be a positive, healthy fighter of this disease like all of you.
I am excited that I found this blog. Reading through your stories has already helped me see what kinds of things I may be facing in the future, and has given me a feeling of community. After going in for a routine physical my primary care physician suggested I have my heart murmur checked by a cardiologist After a visit and tests over a two month period I found out that I have a bicuspid valve that has caused aortic stenosis and calcification. There has been some discrepancy whether or not a .9 aortic valve area measurement is moderate or severe, so I am not sure how close I might be to surgery. My cardiologist says it could be 10 years, or 1 year. Time will tell.
I have played soccer competitively for many years and have been told I have to give it up due to risks and the possibility of damaging my heart. It has been a hard lifestyle change. I wonder if any of you at this stage of diagnosis had a hard time figuring out whether something is actually a symptom, or just anxiety or imagination? My cardiologist says that because my stenosis is moderate, the few things I do feel are probably not caused by my heart valve. I'm just not sure, because others have said my measurement is moderately severe.
I am now 42 years old. I am married and have 3 boys. Right now I think we are all in a state of denial and uncertainty. We just go along like nothing has changed, but all of this does roll around in my head quite a bit. Thanks for listening and I am looking forward to reading your amazing stories as I go through this myself. Take good care.
I am from: Rocklin, California
Karin, your incision is so small it ... Read more
Karin, your incision is so small it is easy to imagine scarless open heart surgery! Get walking!