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How Quickly Life Changes
I had an echocardigram in December 2014. My family doctor told me I had a small leak in a valve. Since I do a lot of cycling (for me) I asked if I could continue and he said there were no restrictions. He did put me on a low dose of lisinopril. He did another echo in October 2015 and said there were no changes. I changed family doctors in 2016 and told him about the valve leak and to check my previous Dr notes when the records came over. At some point during a Dr visit my new Dr told me I had a heart murmor but didn't indicate we should do anything about it. In April 2017 I had my annual physical and was told my numbers were great. I brought up that I had some bouts of fatigue when I biked but it wasn't conistent. I asked the Dr again about the heart valve issue. He decided to send me for another echo. This time the leakage was diagnosed as severe! I was referred to a cartiologist and he starting talking about heart surgery! I had been cycling since March and was up to doing 15-20 miles on a ride. I put up my bike. The cardiologist put me on Lopresser and sent me for a TEE to get a better look at things and it confirmed the severe leak. He then sent me for a heart cath and finally some good news I was all clear. Had I not pushed my family doctor I would probably be riding 25 miles and just pushing through the fatigue.
I researched on the internet and decided to go to Mayo Clinic in Rodchester, MN. I had some problems getting my records sent to Mayo from my local hospital but that all resolved and i have a consult visit there on June 21. Mayo was wanting me to do the robotic surgery but my local cartiologists strongly recommended against it. So I am still debating with myself on what procedure would be best. I'm 67, in fair shape, never smoked and don't drink much. I'm also retired so the recovery timeframe is not a problem.
AmbassadorMR, June 27, 2017 11:35am ESTHi Aldobrando, Reading your story reminded me of some similarities to my own heart valve disease journey. It really is amazing how quickly the "leaking" in our valves can progress from mild/moderate to severe and requiring prompt surgical attention. It is fortunate that you are a regular exerciser (biking) so that you noticed the changes that were happening with your heart function during exercise. This alerted you to a problem and prompted you to get in to see your FP and Cardiologist for a diagnosis. That is a very good thing and an important step in your treatment. Like others have suggested here on the site, I encourage you to pursue getting all of your questions answered to your satisfaction so that you can make the best decision about the type of valve repair/replacement procedure that is optimal for you. I too sought out a Center of Excellence hospital to do my procedure since I wanted the most experienced and knowledgeable surgeon and operating team for my case. Keep asking your questions, get the answers and then work closely with your cardiologist and surgeon to pursue next steps. We are here to support you and wish you the best in your treatment and recovery. Keep us informed. Mark R Heart Valve Ambassador
Aldobrando, June 17, 2017 9:02pm ESTThanks for your replies. I had previous read your questions Christine and I plan to incorporate some of them into my surgeon questionaire. Like you my problem is with the mitral valve, regurgitation. I've had surgery for a torn miniscus and a seperated shoulder. I was down several weeks with the shoulder and did physical therapy so I do have something to look back on but realize this is going to be more challenging.
AmbassadorC, June 13, 2017 9:09pm ESTAldobrando, While this is a repost from a previous entry, I am hopeful it helps you with your decision making process. You have been told by your cardiologist that "it's time" for surgery. You think to yourself, now what? Your upcoming events related to family, work and social obligations flash before you and you try to negotiate time and ask, how soon do I need to have this? The hardest part of "swallowing this pill" is that you wish it could be something other than the one thing that sustains your very being - the heart. To further complicate things, what if you have never had any other surgery, and this is your first experience undergoing major surgery? Nervous anxiety, the fear of the unknown and "what if's" occupy your every moment from the time you are informed by your cardiologist that "it’s time" and the time you meet with your surgeon to discuss the procedure that is recommended. Everything from how do I prepare for this, how do I share this with my family, my friends, my employer, to how will this affect all aspects of my daily living, and what is my surgeons experience, begin to swirl through your mind. For me, after developing a leaking mitral valve the time to repair the valve came within a short period of two years upon careful monitoring by my cardiologist over the course of several years. I was a candidate for the robotic minimally invasive repair but had the option to also have a traditional open heart incision. It was important to me, to discuss both procedure's advantages and disadvantages as well as the number of surgeries the surgeon has performed. Below is a checklist of questions to discuss with your cardiologist and team for when you are informed "the time has come." Surgery: ♥Risks associated with the traditional open heart repair of the valve vs. the minimally invasive robotic repair? ♥In your professional opinion Dr. based upon a degree of medical certainty what advantages are there that outweigh the risks of this type of surgery, in your overall professional expertise? ♥Advantages of the traditional open heart repair vs the minimally invasive robotic repair ♥Dr. in your professional opinion, why do you prefer the traditional repair approach ♥Disadvantages of the traditional open heart repair vs the minimally invasive robotic repair ♥Dr. in your professional opinion why do you feel these are disadvantages? ♥Approximately how long, based upon your professional expertise, have you observed the repair to last? Is it possible that the repair will necessitate a replacement down the line? ♥Is there a more optimal time to have the surgery which will aid in a faster recovery: i.e. Summer vs. Winter (dry and sunny conditions vs snow, ice) ♥Based on my current state of the heart, what is your recommendation for how quickly it should be repaired? ♥How will you repair my valve? (With the ring or just a nip and tuck) ♥Will my body organs be cooled down while on the pump run to preserve them? ♥Percentage of people who you have operated on and what is their outcome? Post Surgery/Recovery: ♥What is the typical recovery time for someone in my age, current state of the heart? ♥How soon will I notice an improvement? I.e. will I still feel the palpitations? sluggishness? Lightheadness that I feel now? ♥Will I need to be on medications after the surgery, if so, what and how long? Lifelong vs temporary? ♥Risks of infection? ♥If so, what? ♥What signs should I be aware of to be considered an ER (other than the common sense ones) i.e. will be it apparent if my valve springs a leak? Diet/ Daily Functions: ♥Soonest I can get out of the hospital? ♥Special diet during recovery? ♥Any Lifelong alternations: Will l I be able to return to eating chocolate? wine? How will caffeine affect my new valve? ♥Will I need a catheter during recovery? ♥Will daily functions such as sneezing, coughing, bowel movements affect have an impact on the recovery? ♥I Have a hard time staying put, what is the recommended activity level for optimal recovery? i.e. Will I be sleeping allot, should I expect to be walking around the house being able to fold laundry and vacuum? To that extent, should I make any advanced preparations that would assist in the transition of recovery Work: ♥How soon can I return to work: ♥How can I handle job stress? ♥Modified work schedule to transition be recommend? Life Overall: ♥What will be my prescribed method of monitoring the condition of the valve replacement? ♥Any Medications? Support during Recovery ♥Any nurses or support groups to recommend for further questions? ♥Any books to read in advance of the surgery? Keep fighting with heart, Christine
AmbassadorC, June 13, 2017 9:04pm ESTGood Evening! Welcome to the support network. I am a survivor of heart valve disease and am celebrating my 4 year anniversary today! I received a repair to my mitral valve through the traditional open heart surgery incision. While I was also a candidate for the minimally invasive robotic repair, I chose to have the traditional repair, through the old fashion open heart method. While I am not providing you with medical advice, I can only speak to my experience when I was in your same exact shoes. I was weighing all the pros and cons of each type of surgery and ironically, there was very little information available when I was trying to research both types of surgeries. What I can say with certainty, is that you must feel comfortable with not only your surgical team, cardiologist and surgeon, but also the facility in which you are going to have your procedure. May I ask what valve it is they are repairing, or is it a replacement? Your doctors can advise you and provide you their opinions, but ultimately, you are the one that has to go through it. Looking back on my journey, I am glad that I made the decision that I did. My recovery was not an easy road by any means, but I feel that it allowed the skilled surgeon the opportunity to see what he needed to, without the assistance of robotics. I commend you for pushing through and getting a second opinion when you were symptomatic. Often times a BIG factor of valve disease, is that it is often times confused with the everyday stresses of life or feelings of fatigue, that are mistaken for having a busy day thinking "this too shall pass". I wish you the best of luck with the upcoming consult at Mayo. I would like to share with you in a separate post, a series of questions that I had asked re: my heart surgery and I am hopeful that this will assist you in your decision process. With Heart, Christine
AHAASAKatie, June 12, 2017 10:21am ESTThank you so much for sharing what is happening in your life with us. While I can't really speak to if the robotic surgery is appropriate, I can share these patient materials with you. One is about Heart Valve Diseases and treatments and the other is about getting second opinions. http://www.heart.org/HEARTORG/Conditions/More/HeartValveProblemsandDisease/Heart-Valve-Problems-and-Disease_UCM_450280_SubHomePage.jsp http://www.heart.org/HEARTORG/Conditions/More/ConsumerHealthCare/Getting-a-Second-Medical-Opinion_UCM_434325_Article.jsp#.WT6inOvyvIU If you have any concerns about your treatment plan, it is within your right to keep asking questions until you are comfortable with the answers. Getting another opinion might help, or asking your cardiologist to articulate why they are not a fan of the robotic surgery are both appropriate actions for you to take. Please let me know if there is anything else I can help you with and please know- we are here for you, to help support and educate, every step of the way. Best Katie