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Heart valve with multiple other conditions
I am so thankful I found this site and there is a community to help.
I am 42 living in Brooklyn, New York. My health condition is a complex one. I have an issue with my kidneys, high blood pressure and recently found out that my mitral valve needs repair. For about 10 years my cardiologist was following me and the valve was mild to severe. About 3 weeks ago I had chest pains and went to emergency room. After getting echo done, they saw that the valve is severely broken now and I must get it repaired.
I am not going to lie. I am very very scarred.
Afger meeting with heart surgeon, he informed me that they will try to repair the valve but it’s possible they will replace it.
Plus I am really worried because of my kidneys not being so healthy, the surgery may put more strain on them
I need help making a few decisions
1) what is the bestheart valve hospital in nyc to go to?
2) if they need to replace the valve, what should be the best option?
3) I am very worried about the recovery, what should I expect? Will I be in pain? Very scared.
Thank you you for your support.
AHAASAKatie, December 31, 2018 9:34am EST
I am so sorry that you have to manage all of this! We have a very strong heart valve patient community and I look forward to reading their responses to you. We have some great information that can help you understand your heart valve treatment options and next steps. We have some wonderful survival stories on the site and I encourage you to read, comment and let us support you! Best Katie
AmbassadorDN, December 31, 2018 11:38am EST
You have come to the right place. As Katie said, there are many of us who have “climbed” the proverbial “mountain” of heart valve surgery, and we have a variety of experiences. I’ve had three heart valve surgeries myself; the most recent (and hopefully last) was in November 2017 when I was 42 years old.
It is completely normal to feel scared to have surgery, especially with other conditions. One thing I would advise is that you have your kidney specialist work with your surgeon. Of course, your surgical team will need to be informed of any other health issues you have so as to mitigate any potential complications.
To help answer your questions:
1) I’m not in NY, so I’m not sure about best heart hospitals there. Hoping one of our East Coast members can assist you in that.
2) Work with your surgeon in determining which valve type is best for you. While any cardiologist and surgeon are likely to agree that repairing the valve is far superior to replacing when possible, only you can make the determination as to which valve type (tissue or mechanical) is best for you. I’ve had both tissue and mechanical. My tissue valve failed extremely early (this is an extremely rare occurrence, so please don’t let my experience scare you!) and my surgeon opted to do mechanical this last time since he wasn’t sure why the tissue valve didn’t work out for me. Because at 42 years old you are still considered young in the heart surgery world, if you were to have a tissue valve, you would more than likely need another surgery to replace that valve since tissue valves wear out over time and have a “life span” of about 20 years. Mechanical valves, on the other hand, can last a lifetime, but the drawback is that you will need to be on Coumadin for the rest of your life to avoid blood clots since clotting can happen with the metal valve. There are many myths about Coumadin; don’t listen to them. You can still be active and do almost anything you like while on the medication. I lift weights, go to the gym, and run. Either way, you can (though rare) have issues that may result in another valve surgery down the road. Nothing is a for-sure guarantee.
3) I’m not going to kid you. Surgery is painful. The recovery is not a smooth ride. You will have gains and setbacks which are perfectly normal. Just don’t let the down days discourage you too much. Expect that you may develop post-op depression. It happens more than doctors recognize. See if you can set up an appointment with a therapist after surgery to help nip any depressive feelings in the bud. My cardiologist and I just had a discussion about that recently, in fact. I latently developed severe depression after this last valve surgery and I needed to be on an antidepressant for a while. My cardiologist said that not only is post-op depression psychological from having your chest cracked open, but it is also from being on the heart-lung machine. Being on “sleep mode” does something to your brain chemicals and when you come back online, your brain chemicals are all messed up which can lead to depression.
I know what I presented to you is a lot to digest, and please don’t be alarmed by my experiences. The fact that you are thinking about all this now speaks much for your strength as you face heart valve surgery. Please let me know if you have any questions. Also know that we are all here for you and we wish you the best!
To Heart and Soul Health,
Debra (Ambassador DN)
AmbassadorB, December 31, 2018 4:44pm EST
You've already heard from Ambassador DN, and you can't find better experience, insight and consultation than Debra has offered.
The New York Presbyterian Hospital-Columbia and Cornell is ranked number #4 out of the top 100 Heart / Cardiac Surgery Hospitals. Remember, the Surgeon, your Cardiologist, and the supporting team of professionals, regardless of the facility (Hospital) is the important set of credentials to evaluate. Your cardiologist - your team "Captain" is the one that you should ask. He is the one that has the primary responsibility for providing the finest medical team for you. His career and reputation are driving him to provide you with the finest. Again, the best options for you are his primary concern. Who is this person? Do you know his experience and successes? You must have excellent confidence in his judgment! Trust him!
As a result of the tests and examinations that you will experience, your cardiologist will know what the best choices are in your situation, and he will review this with you. Make sure that you understand and support his plan! Don't hesitate to ask him about your post operative discomfort and what you should expect. I was impressed with the schedule that I had following my heart valve replacement. You won't have an opportunity to get comfortable staying in bed in the hospital! They will roust you out!
You'll be fine! Keep us posted.
All the best!
Ambassador B (Bernie)
Arisilver, December 31, 2018 6:12pm EST
Thank you all for the encouraging responses. Having such a community is a blessing!
My biggest worry remains with the post-op recovery, since from what I just learned it is a rough road. Currently, I am trying to figure out and arrange some income sources (as I am self-employed). I will figure it out I am sure :)
The current surgeon who I was referred to has about 35+ years experience in doing heart valve repair/replacement. Seems that he "knows what he is doing" lol :) But looking at the doctors and facility at "New York Presbyterian Hospital-Columbia and Cornell", it seems that the recovery is better there than in the Brooklyn hospital i am researching.
@AmbassadorB: Thank you for the advice about speaking with the surgeon about the medical team. That I will immediately do and ask questions, especially as it relates to my recovery.
I am really hoping that the surgeon would be able to "repair" the valve and not replace it. The replacement seems scary as nobody knows how the body can react to a foreign object. But I know I need to be prepared with my decision in case, (as I don't think they would wake me up during surgery to ask.. lol - hey I have to laugh a bit right? ). From what i have learned from this community, it seems the mechanical is the best option. Can anyone chime in on this?
The "depression" part now scares me more. It makes sense. For the past few months, due to my other health issues, I have had lots of down days and I will not lie, as a grown man, I was crying, and scared. Can anyone recommend what to do after surgery to decrease the depression symptoms?
Again, thank you everyone for the support! This is truely remarkable having such a community online who really wants to help.
Blessings to all!
AmbassadorC, December 31, 2018 7:50pm EST
Good evening Ari,
Welcome to the support network❣️ You are amomg a community of heart warriors made up of every valve and varying exoereiences. My fellow Ambassadors have provided you with great points re your journey. I am a fellow mitral valve repair patient via open heart surgery. I won’t repeat any of the sage advice that they have given but I will I echo Ambassador DN comments re it being completely normal to be scared before surgery. I dont anyone can blame you as we all have been down that road of the what if’s and why mes? How to get through all that negative that is swirling around, day in and day out? Know that every “body” is different in terms of acceptance, and recovery. For me, the scariest part of preparing for OHS was the fear of the unknown. I wish that I had the resources available to me that can be found on the AHA Heart Valve site that I believe Katie provided to you. For me, being prepared was half my battle. The other half was knowing what to expect in terms of recovery. I found that when I asked my surgical team just how long I would be on FMLA and how quickly I can get back to a “normal routine” I found that I got a very generalized answer of anywhere between 4-8 weeks. Looking back, I now know why. It’s because every body is different in terms of healing and recovery. Not to scare you, but to be realistic, I came out of OHS with a few speed bumps in my road to recovery. I had to have three cardioversions and a Cather ablation within 4 months post surgery. That said, I encourage you to be your own Advocate in terms of post recovery by keeping a simple spiral bound notebook of your progress and any thing that does not feel right. Communication is key with your team. As Ambassador B stated, if you have the full trust from the get go, your post op recovery should be no different in terms of the comfort level in speaking up.
I will leave you with some resources to research in terms of preparation as well as a post surgical milestone tracker that I think you will find super helpful. Last pearl of wisdom to share, be sure to enroll in a cardiac rehab program post surgery. This will help you advance leaps and bounds both mentally and physically.
My very best wishes to you as you continue your journey. Please feel free to reach out to us as we welcome you with heart. And keep on fighting and kicking out those negative thoughts, one heart beat at a time. ❣️ Oh will cross that finish line.
AmbassadorC, December 31, 2018 8:13pm EST
Ari, here are a few links to some helpful resources,
Recovery Be sure to check out the post surgical milestone chart
Post surgery recovery plan Be sure to check out my tips and tricks for a packing list (even though it’s from a females perspective)
Last but not least, I would like to share with you my list of questions that I prepared when meeting with my surgeon. This may also ease your anxiety and fear of the unknown.
AmbassadorR, January 19, 2019 2:43am EST
I can understand all that you are going through, but it is all very normal. Valve repair or replacement operations are done thousands and thousands of time a year. It is a very common operation. Please take comfort in this. I remember before my aortic valve replacement (I also had a mitral valve repair, and a few other things at the same time) I spoke to one of the nurses and asked if this operation was a big deal: she said "Yes it is, but not for us." That provided a lot of comfort for me.
Recovery can be a bit difficult, but that difficulty should only last a month or less. After that, while you won't be healed, it will be easier day to day. At least that was my experience. For me, trying to fall asleep was the biggest issue. You will be in some pain, but not severe pain. The best way for me to describe it is; a lot of discomfort. I experienced all the recovery side effects that I had read about, and they all eventually went away just like I had read. I cried, I was very emotional, I got depressed, I had numbness, and other things, but I never worried too much because I knew these side effects were part of the recovery. At times during recovery it may be hard to believe you will be back to normal and totally well again, but you will be. You just need to believe this.
The key for me was doing all the breathing exercises, walking, and everything else they asked me to do in recovery. I also did them even when it was difficult, and I recovered well. Six months after my surgery I walked 200 miles through France. What provided the most joy was knowing that my heart was in a lot better condition than before and it was one less thing I had to worry about. After your surgery you will be in much better condition than before and your surgery may be a badge of honor as it was for me. I was proud that I took the necessary steps to get better.
You are young and that will work in your favor. I was 62 and even then the success rate for this type of surgery was in the high 90 percentile. Having an operation like this at time can be overwhelming, but with today's technology you be will okay. You will need to be strong at times, but this is all very doable. Keep us posted, and know that we our always available to you.