tomohm
  • 11 replies
  • 451 views
  • 6 followings
tomohm, September 10,  2020  3:29pm EST

Soon to have heart surgery

I'm 53 years old.  8 months ago I learned during a regular physical that I have a bicuspid valve with an aortic aneurysm.  My doctor sent me to a cardiologist who rans some tests and sent me to a cardio surgeon because of the aneurysm.  At the time my aneurysm measured 5cm and I was told at 5.5cm surgrey would be needed but until such time I needed to be tested every six months.  Two months ago I had my first test and the results showed the aneurysm has now reached 5.1cm.  Now my doctors say I should have the surgrey now to fix the aneurysm.  My surgeon is saying that he recommends repair of the aneurysm now but he also says that he won't be able to tell me if the valve could or should be repaired until I go and check myself into the hospital to have the aneurysm repair.  He said that the day before the surgery they will do another procedure where they will insert a camera inside me to check the condition of the valve and determine what should be done about the bicuspid valve.  He did discussed the possibilities of repairing the valve or replacing it with it with either a mechanical valve or biological valve but as he said... "that is a game-time decision".   I'm now scheduled to go to the hospital on Nov 9 but the surgery is set for Nov 10.  As I understand, I will go through this procedure on the 9th that will determine wether I need to fix and/or replace the valve.  Seems like I'll have very little time to consume the information he provides me on the 9th just to have surgery on the 10th.  But I have done a lot of research about the topic of valve repair and valve replacement so hopefully I will be ready to make this decison when ready.  If I need to replace the valve I will choose the inspire biological valve.  Though it does sound odd to me that I don't know whether I will have valve surgrey until the day before I have the surgrey to fix the aneurysm.  But I have choosen the best cardio hospital in my state with the chief surgeon doing the process so I have faith in my doctors.  

  • AHAASAKatie
    AHAASAKatie, September 11,  2020  8:58am EST

    " I have chosen the best cardio hospital in my state with the chief surgeon doing the process so I have faith in my doctors. " I love this statement. It truly is the best course of action to take. At some point, we all have to have faith in our medical team :) . I can share the resources we have on heart valve treatment and surgeries if that is helpful for you. And I look forward to reading what our other members can share in terms of personal experiences as well. 

    Have a great Friday, Best Katie

  • AmbassadorR
    AmbassadorR, September 11,  2020  3:04pm EST

    Hi Tomohm,

    Heart Surgery can be a scary experience, but for me, I took comfort in knowing that this type of surgery, was performed regularly around the country and the world. I also had surgery for an aneurysm, and had an aortic valve replacement, plus several bypasses and a Maze procedure for Afib. I recovered well and was back doing my regular fitness routines a few months later, including walking a couple of hundred miles across France six months after surgery. I was 61 at the time of my surgery and relatively healthy and fit. That makes a big difference.

    I had a tissue valve replace my old valve. I knew going in what procedures were going to occur, but I have since learned that we are all different. The medical care we require can change from person to person. What works for one person may not be the best for another. The science of heart surgery is abundant with information. These days the number of surgeries are much more common than I ever would have imagined. Having a good facility and surgeon should provide a lot of comfort for you. I also had a very good surgeon and that made me feel comfortable going into surgery.

    As you get closer to the surgery date you'll know more about what will be going on and perhaps how the decisions are being made. I would recommend you have all your questioned answered prior to going in so you are comfortable with everything. Sounds like you have a good medical team who would gladly answer all your questions. Keep us posted.

    Ray

    AmbassadorR

  • AmbassadorB
    AmbassadorB, September 11,  2020  7:49pm EST

    Tomohm:

    I am one of the heart valve patients that has an appreciatiion of your current status and the questions that you are currently facing.   I suspect that only a very few have proceeded with the program recommended for them and not come through the experience with a: "Whew!  I'm so glad that I did this!"  Take a look at the key points:                                                                                                                                                                                                                                                                     1.   Hospital status?   (Care for the patient, availability of the latest equipment, reputation.)   Your assessment:    "Best Cardio Hospital in the State!"                                                                                                                                                                                                                                                                                  2.  Doctor qualification?     Your assessment:  "  - -   chief surgeon doing the process so I have faith in my doctors."    Clearly, his experience, training and involvement - validates your thinking.   None better!                                                                                                                                                                                        3.   Age factor:   You're in the "younger" population.  Overall ability to come through with Colors Flyiing  -  Excellent!    I was 30 years older.                                    4.   General Health:   Clearly there are no other health factors that would suggest added risk.                                                                                                            5.   Wait - for whatever reason(s)?    Your aneurysm has grown and waiting for repair is not an option!   You have a suggested plan on evaluation and repair/replacement of the bicuspid valve.   Your surgical team is "on the ball" and has outlined  the best plan for further work.  Tomohm - don't delay.   You will be impressed at the overall improvement in the quality of your life - following the procedure(s).

                                  Good Luck!    Stay the course!     As Ray has suggested, keep us posted and don't hesitate to ask us any question about our cardio experience.

    Ambassador B       Bernie

     

     

     

  • AmbassadorC
    AmbassadorC, September 12,  2020  5:02am EST

    Welcome Tomohm to the support network as you are among a community of heart warriors. We are many hearts but one, as we are each other's strength for the journey ahead. I echo the remarks and insights shared by my fellow Ambassadors. I have found that based on my journey, having done the research and homework on your cardiologist and surgeon is key to lessening the upcoming anxiety you are facing. Putting your heart in the hands of your team is crucial and you must feel 100% comfortable with your decision, and it sounds like you have done just that. The next step is to continue your open dialogue with surgeon. Do not be afraid to ask follow up questions. When I had a repair to my mitral valve, my surgeon recommended to me the possibility that the repair may in fact have to be a replacement but he wouldn't know until he fully "got in" to see in real time what condition the valve was in. Having said that, I had to decide prior to going in to surgery that if I needed a replacement which would I choose? Tissue or mechanical? I had to weigh the pros and cons of each, based on my lifestyle. The way it was explained to me is that while the TEE test, (see TEE) can provide information to the surgeons before surgery, it's only a road map. The true indicator is when you are under and the surgeon can see in real time the state of your heart. While this is not to be construed as medical advice, it is something that sounds as if your surgeon is preparing you now in advance for, so that you may do your research ahead of the procedure. From my experience, you will find that you must in fact be your own advocate. Don't hesitate to get a list of follow up questions to discuss in advance of your surgery date. I'm happy to share with you my questions that I had for my surgeon re my mitral valve, if you would like. 
     

    While it is perfectly normal to feel anxiety and apprehension in advance of surgery, know that we welcome you with heart❣️ Please continue to keep us informed or if you have additional questions. We are each other's strength for the journey. 

    Ambassador C 

  • tomohm
    tomohm, September 22,  2020  7:34am EST

    Thank you all for all your experience and support.

    I have since spoken not to the surgeon but his assistant on question I had about biological valves and while she did have the answer for me she also said she was going to review the question and answer with my surgeon.  Since this point I've spent at least a couple of hours reasearching everything everyday I can about my condition and the procedures and choices I will face and reading many stories here in this forum which was VERY helpful.  But those choices and decision will not arrive until the day before I have surgery when they do a angiogram and the surgeon informs me what they find and his recommendation.   I know for sure is that the aneurysm needs to be repaired but it's the valve that is still in question.  Can it be repaired or will it need to be replaced.  That has the surgeon said, will be a "game time decision".  In any case, after much personal research into this I've come to the conculsion that if the valve needs to be replaced, I think I will prefer the inspiris resilia tissue valve.  I understand I will probably require additional procedures in the future with this choice but I think for me, that's a better alternative than blood thinners and the "clicking" sound that I don't believe I would be able to ignore.  I still have until November 9th to change that decision but I don't think so.

    I should say that I'm not really scared having this done.  As I originally said I'm comfortable with my doctors and the care I will receive.  I'm just so NOT looking forward to the day after the procedure and the following several weeks while healing.  I certainly fit in the category of bewilderment in that I had no symptoms of having any kind of heart related problems.  I felt fine, I felt strong and I had no pains or issues to speak of with my heart and then just one day during a normal physical I learn I have this condition and a hand full of months later being told you need surgrey now... it's just been sorta shocking to me.   

    Thanks again for listening and your support...

      

  • wolff
    wolff, October 2,  2020  11:19pm EST

    I'm 60 and get mitral surgery Oct 13, everything is good but that valve, the issue with repair and with tissue valves is they are not long term fixes at all, the tissue valve wears out, and at 53 do you really want to go through heart surgery ordeal, the recovery, costs etc  AGAIN in your 60s?

    I told my surgeon I wanted a permanent fix because I don't want to go through this again when I'm 70, retired out of my workplace and lose it's GREAT insurance that covered EVERYTHING 100% with no squabbles or problems.

    From what I've learned, there is a study currently in phase ll to see if Eliquis (Apixaban) can be used with artificial valves, specifically the On-X valve to replace Coumadin/Warfarin, so if that is found good and safe and gets approval it would be a good option!

    "that's a better alternative than blood thinners and the "clicking" sound that I don't believe I would be able to ignore.  "

    All the videos I watched on youtube of people who had the surgery and kept a daily "vblog" etc were helpful in seeing what to expect post surgery, at least one woman was out of the ICU in a day and a half and out of the hospital  in 4-5 days, another recorded when the chest tubes were removed, he didnt flinch, he said it only felt wierd. As far as the clicking goes, everyone says they got used to it and dont notice it any more, I'm hard of hearing  and have tinitus, so I doubt I'll even hear it

  • tomohm
    tomohm, October 5,  2020  5:13pm EST

    Hi Wolff... 

    That On-X value with the possibility of using Eliguis instead of using blood-thinners sounds really interesting and I have been following that.  And I hear what you're saying about going through the ordeal again when the tissue valve needs to be replaced.  But I do think you missed a couple of things...

    No one knows right now how long the new inspiris valve will last because they just began using them... but the company that makes them "Edwards" who is a big company in the field of heart-valve production believes this new biological valve can last longer than 20 years.  They first began using them in Europe a little less than 10 years now I believe and here in the US they began in 2018 when it got FDA approval.  The Europeans have already produced a 5-year report of this valve and indicators so far have been very impressive.

    With this new valve I believe I should be able to get 20 years.  This new valve from Edwards also has a design built-in to allow a new valve to be inserted into it to replace the first valve if that valve does need to be replaced and the procedure is a TAVR.  Which means its a valve-within-valve procedure which is NOT open-heart surgery.  They simply insert the new valve through the leg and you can go home the next day.  With this new Edwards biological valve I can have 2 TAVR's procedures done after the first biological valve fails.  Like this new Edwards bioloical valve no one really knows how long the TAVR will last but expectation is at least 10 years but even more.   So, first I have the Ewards bioloigical valve done.  That should give me at least 20 years.  That would take me to 73.  After that, I could have 2 TAVR procedures and each one should be at least 10 years each... that would take me to 93 years old at a minium.  I'm good with that!

    "As far as the clicking goes, everyone says they got used to it and dont notice it any more"

    You said that you're hard of hearing so that really could be a good thing for you and I hope so as well.  But I can tell you from the research I have done... not everyone makes that claim that they don't hear it or it doesn't bothers them.  I'll grant you the vast majority I see does back that claim, but when you do read comments from those who can hear the ticking and it affects them... it's really troublesome to say the least.  For example, read the comments in this link:   https://www.heart-valve-surgery.com/heart-surgery-blog/2008/11/29/click-mechanical-heart-valve-replacement-clicking/  ...the comments come after the article and particularly read the comments from the person "IABassBo" ...  or an article like https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5730732/ ...  I could provide you some more examples of people who have some serious issues with ticking and for me...it's not worth the risk.  I'll go through a TAVR and not worry about medication.  But we're all different and I'm clearly not saying any way is the best way...it's what ever is best for you.  For me, mechanical is not the way.  Though I wish you the best my friend.  Please update me when you can.

     

  • Lisamgg
    Lisamgg, October 9,  2020  10:47pm EST

    I was born with a bicuspid aortic valve which is now severly calcified and stenotic. I also have an ascending aortic aneurysm that measures about 4.5cm. I am having open heart surgery to replace the valve with a cow valve and to repair the aneurysm on. Monday, Oct. 12.  I am nervous but I don't think I have a choice anymore. I dont want to be in an emergency situation  so I think it makes sense to have the surgery at this time. I am just curious if anyone has had open heart surgery for these conditions and what was the surgery experience like and the recovery process. I know everyone is different but I am trying to think positive thoughts and to hope for a good recovery. I am nervouse about the surgery in general - I don't like knowing that my heart will be stopped for a time, but I do beleive I will make it through the surgery. I am 63 years old, and in very good health . Can anyone tell me their experience with the surgery and with recovery. Thanks.

  • AmbassadorC
    AmbassadorC, October 10,  2020  9:17am EST

    Good morning Lisamgg - 

    Welcome to the support network!  You are among a community of heart warriors that will be your strength for the journey ahead!  You are perfectly normal to have the apprehension and fear of the "what if's" as we all can relate to.  While my journey with heart valve disease involved the mitral valve, I had some of the very concerns that you referenced.  We are all connected by "heart" even though our journeys are a bit different.  You are corrrect when you state that every "body" recovers differently.  However, I would like to share with you some resources, including my tips and tricks in how to navigate through post surgical recovery.  The AHA has a tremendous resource libary, that I invite you to review, if you have not already done so.  That said, I am attaching a downloadable PDF that will provide you with a framework for recovery milestones.  Please do not feel that you will fall within these milestones at exactly the same time, but use it as a guide to quell some of those pre-surgical fears of the unknowns.  

    Wishing you all the best for a successful surgery, and please feel free to reach out to us with any additional questions or concerns.  We would love to hear how you are doing post surgery, as we welcome you with heart!  (Links to my journey below)

    Read My Journey: Operation Backward Blood Part 1 | Part 2 | Part 3

    AHA Resources - See considerations for Surgery Section AHA REsources

    With heart, 

    Ambassador C 

  • tomohm
    tomohm, November 8,  2020  12:03pm EST

    Well... tomorrow morning I head to the hospital and start what I expect to be a long journey of sorts.  Though my surgery is actually going to be the following day, my surgeon wants me to go tomorrow and have an anagram and some sort of lung test.  After that, he will finally then tell me what the recommendation will be with regards to my Bicupus and aneurysm.  I really don't like this whole... "game time decison" routine of not knowning exactly what be happening to me until the day before but I think it really boils down to wether the valve can be repaired or needs to be replaced.  I expect it needs to be replaced... previous tests showed regurgitation and some calcium build-up.  In any case, I did all my homework on just about everything I need to know and a lot of that information came from here in this supportnetwork forum and the wealth of youtube videos.  Nothing has changed since my first post months ago... I really don't have way in much of fear.  I simply just dread waking up with all those tubes sticking out of me and having to start the long journey of recovery.  But I have a supportive wife and family and I'm over time I'll over come this.  I'm still convinced that I would prefer a Inspiri biological value if the valve will require replacement and I feel good with that decision...  I will now finalize my list of final things to do, go out for a good dinner, get a good rest and head out to the hosiptial.  Thank you all for kind messages and information.... Ambassor C... I read through your 3-part Journal a couple of times now... thank you for outling your experices, it was very helpful so far and I'm sure it will be even more so after the surgrey.   I'll follow up this post in a couple of days and let you all know what happened...  Thanks...

dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active