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Blindsided by the need for surgery

  • 1.  Blindsided by the need for surgery

    Posted 11-13-2023 08:23

    Hello everyone. I am new to this group and to the "in need of a mended heart" world that has become my reality. I am learning how the heart does and doesn't work and a whole new vocabulary so please excuse any confusing terms and descriptions that I may use incorrectly. I have recently been diagnosed with a bicuspid aortic valve and ascending aortic aneurysm. I have been scheduled for open heart surgery in less than three weeks on November 28th for ascending aortic replacement, aortic valve replacement and possible aortic root replacement. All of this started in April with some tightening in my chest during hiking and has escalated to heart surgery. I already had plans to retire in June and spend my carefree, workfree days traveling the US and enjoying the benefits earned from 35 years of working. Now I'm caught up in this nightmare where I'm terrified that either I won't make it to fulfill by retirement aspirations or won't physically be able to do so. 

    It has been helpful to read your positive posted messages and I pray that when I get to the other side of this, I will be able to post a similar message. On October 3rd, I was absolutely blindsided by learning of my need for surgery and have been spending these many weeks researching what's next to prepare myself both physically and mentally. That's how I stumbled upon this group. I have made several adjustments based on the information that you have shared, and I finally decided that I needed to become a part of this community. I would appreciate any suggestions for things that I may need to be aware of moving forward. A huge concern is returning home post-surgery. I live alone and absolutely hate to ask anyone to do things for me. I recognize that this must change during my recovery time. So, my question to the group is how long after surgery will I need someone to stay with me? I know that we all recover differently so maybe a best- and worst-case scenario. I apologize for the long post but I'm hoping to help you understand my situation.

    Many thanks,



    ------------------------------
    Lesa Hines
    Retired
    Charleston WV
    ------------------------------


  • 2.  RE: Blindsided by the need for surgery

    Posted 11-13-2023 13:58

    Lesa,

    I'm glad you have found the mended hearts forum. Connecting with other open heart survivors should be an important part of your support team.  Many of your post surgery questions should be directed to your cardiologist.  In addition, there will be a social worker available at the hospital to answer questions about post surgery home care. 
    Best of luck,
    Vic 



    ------------------------------
    Victor Fabry, Founder
    Healed Hearts of New Jersey
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------



  • 3.  RE: Blindsided by the need for surgery

    Posted 01-22-2024 18:56

    Hi Vic,

    I've read several of your posts and you seem very knowledgeable so I'm asking a question. I had my surgery in November. Tomorrow will be my 8 week mark. I will say that I am very glad to be on this side of it. I am mostly healed. My incision has healed and the glue has come off. I am a little concerned that my chest is still so sore and sometimes aches.  Each time that I  get up from bed, the area around the incision feels like it's on fire for a few minutes. Is this normal? If so, how long does it last? I've done my follow up with my surgeon but that was at three weeks after surgery and this wasn't an issue. I had planned to ask my cardiologist about it but my appointment last Friday was canceled due to a snow storm and it's rescheduled until February. I appreciate any information you can share with me concerning the healing of my sternum. 



    ------------------------------
    Lesa Hines
    Retired
    Charleston WV
    ------------------------------



  • 4.  RE: Blindsided by the need for surgery

    Posted 01-23-2024 08:25
    Lesa,

    I feel your recovery and healing is normal. All of us are different and the healing time and process can vary person to person. The pain and burning will go away but in all honesty it could be up to a year after surgery before your chest feels normal again. It won’t hurt but you may move or turn certain ways and it just doesn’t feel like it did before surgery. The main thing to focus on is you have come thru the surgery and you will enjoy what I call my bonus years. I have just celebrated 17 bonus years following 5way bypass surgery.
    Best wishes and things will get better.

    Tommy Broughton
    Mended Hearts Chapter 28

    Sent from my iPad




  • 5.  RE: Blindsided by the need for surgery

    Posted 01-23-2024 08:52
    Hi Lesa, 

    Congratulations, the hard part is over and recovery is just about time and patience. Make sure you aren't lifting anything heavy or driving until your medical team gives you the green light. Although the breastbone can take up to a full year to mend it shouldn't take long before your pain or discomfort subsides, but eventually it will be completely healed. 

    Best regards,
    Terry T. 
    2x mitral valve repair 





  • 6.  RE: Blindsided by the need for surgery

    Posted 01-24-2024 02:47
    I just had my Mitral valve replaced and Tricuspid as well in November and doing good. You will have emotions and this is normal. When I get this way I have friends who gets me through my concerns and the important thing is to go to Cardiac Rehab to help you with the exercises you need for recovery. Healing time does take time and have questions for your Cardiologist when you see him. This is my second heart surgery and it's been 12 years ago and doing good. I had my aortic replaced. The way they can do the different surgeries now is great. It takes time to heal and you will feel much better.





  • 7.  RE: Blindsided by the need for surgery

    Posted 01-25-2024 10:33

    Dear Trey,

    Thank you for sharing your emotions about the upcoming heart procedures. I could write a book titled "The Man Who Mastered Fear." However, just when I feel I've conquered fear, an irregular heartbeat reminds me to work towards returning to a peaceful state of mind. If I had a dollar for every time I died in my head, I would be a millionaire.

    I had my first surgery at 24, advised urgently after a catheterization that open heart surgery was necessary. Now at 60, I've undergone three open heart surgeries, each time replacing a worn-out aortic valve. The collection of five worn-out pacemakers and new wires in my chest stands as a testament to enduring numerous recoveries, sometimes feeling like I didn't want to recover anymore.

    Thank goodness for the few people who have helped me navigate through those dark times. I wish the medical community emphasized building a strong support system, recognizing that the mental health aspect of recovery can be tougher than the surgery itself. Fortunately, times have changed, with increased attention and research on pre-post open heart depression and anxiety.

    I've learned to take life one heartbeat at a time, I have surgery on the designated day (not every day in my head) and practicing mindfulness to focus on the present. Living in the 'here and now' has become my mantra, as anxiety often stems from the future tripping, and depression from the past. The most precious place to be is in the present – avoiding the pitfalls of dwelling too much on yesterday or tomorrow.

    I engage in activities like reading, praying, meditating, and helping others, like writing this letter to you. Instead of asking myself 'why,' I now ask 'what do I need.' I hope you find something useful in this message. I'll leave you with the words of my spiritual mentor: "Do not be mad about the peace you do not have from the work you are not doing." It works, brother!

    Thanks for reaching out and sharing your story. You're in my thoughts and prayers.




    David Apilado Sr.






  • 8.  RE: Blindsided by the need for surgery

    Posted 01-25-2024 10:51

    David,

    An incredible story of three open heart surgeries to replace your aortic valve. How many years since the last surgery?  I have a 16 1/2 year old Edwards valve that will be replaced soon with a TAVR valve. You should discuss a TAVR with your cardiologist, as an option for your next valve.
    Vic 



    ------------------------------
    Victor Fabry, Founder
    Healed Hearts of New Jersey
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------



  • 9.  RE: Blindsided by the need for surgery

    Posted 01-25-2024 12:47

    Dear Victor,

    I hope this message finds you well. I wanted to express my gratitude for the TAVR suggestion. It has been a long wait for advancements in this surgery, and I am eager to explore the possibility.

    My last surgery was in 2015, and at that time, I was informed that I wasn't eligible for TAVR. I am considering reaching out to my cardiologist to inquire again, as I understand that medical criteria may evolve over the years. I am particularly curious if changes in my cartilage from previous surgeries might affect my eligibility.

    Considering my age, I opted for a prosthetic valve in my first surgery, aligning with the lifestyle I was leading. I was advised that once a prosthetic valve is in place, it might be challenging to switch to a mechanical one. Could you please confirm if the Edwards valve is mechanical? I've had experiences with a pig and two bovine valves, with the latter lasting a year longer than the former.

    I appreciate your insights on this matter and look forward to any guidance you can provide.

    David 

    David Apilado Sr.






  • 10.  RE: Blindsided by the need for surgery

    Posted 01-25-2024 14:08
    David,
    Since your bovine aortic valve is only 8 years old you should not need it replaced for at least another ten years.  My cardiologist, who is in his 70's, received a mechanical aortic valve about 2 years ago, so discuss that option with your surgeon. My Edwards SAVR (surgical aortic valve replacement) is a biologic tissue valve.  The tissue is harvested from a calf's pericardium.  The Edwards TAVR (trans aortic valve replacement) does not require open heart surgery and is inserted percutaneously through your femoral artery.  Since the tissue used in a TAVR is similar to a SAVR, the lifespan should be comparable. Finally, I was told by my thoracic surgeon that the existing SAVR provides an ideal "landing spot" for a new TAVR valve. 
    ATB,
    Vic

    Regards,
    Vic Fabry
    CEO, Greylock Advisors, LLC 








  • 11.  RE: Blindsided by the need for surgery

    Posted 01-25-2024 11:51
    I know since my health chawhat's s with my heart valve  makes you wonder what's next and it starts the mind thinking about will the surely work, will I make it and you have to at that moment have a person that you can talk to about all the emotions you're having right then. I go to the Lord who made me and knows our body and ask Him for guidance with my thoughts and direct all staff that will be doing my surgery to make all the right moves and know exactly what is best for me. Maybe I was having a brief panic attacks and always happens in the early evenings and when I pray or talk with someone the feelings that I was having are gone. It usually last just a very brief moment. I have had my surgery and ended up being more than expected. It was done by robot to fix mitral Valve and Tricuspid and a few hours later the team had to open my chest up to fix the bleeding and all this was successful. I still wasn't quite where I needed to be with my heart rate. I then 9 days later I had a pacemaker put in. I didn't want this because of my recovery would be longer, but I prayed and had many prayers about all of this for the surgery will be done right and I wanted to live to see my two young grandchildren grown. So here I am with all this heart surgery and alive and back home. I start Cardiac Rehab the 1st. So we all have to take each day what is happening at this time that we are still here and we will get better in time. WE CAN ��





  • 12.  RE: Blindsided by the need for surgery

    Posted 11-14-2023 11:39
    Lesa-
    I had open heart surgery (mitral valve repair and bypass) at age 69 twelve years ago. My wife was my primary care taker but we received in home help from nurses, physical therapist, and a woman to assist me with showering. (We did not have a stall shower.) I was encouraged to do things if I was able but my physical abilities were severely limited at first. My wife was/is extremely protective and would not go out unless a friend agreed to stay with me. I can't recall how long this went on, but I do know it took me two months before I could walk for 30 minutes on flat ground, for only then did I feel ready to begin a formal physical rehab program. (I had been in it earlier, so I knew what would be required of me.)
     
    The important thing to keep in mind is how much better you can become. I was so amazed and so grateful I joined Mended Hearts and became an accredited "Visitor" to speak with patients in the hospital. I had had the whole gamut of depression, anxiety, uncertainly, but these have literally been the best years of my life. I tell people "I don't recommend it. But you can get a lot out it." STAY POSITIVE.
     
    Bob Levin
     
      





  • 13.  RE: Blindsided by the need for surgery