Has anyone here had a double valve replacement? I am scheduled to get both my mitral and aortic valves replaced with mechanical valves in April. I am very worried about the fact that my risks are higher because it's two valves now and my second OHS, (even though my risks are still relatively low given my age and otherwise good health). I'm still pretty freaked and sad because I hoped and believed over these years since I got my bovine valve that I would be a candidate for a minimally invasive procedure when the time came again and that my mitral valve could be repaired instead of replaced, but alas it is not the case. So I am working on acceptance and gratitude and visualizing life after surgery, and after recovery when I have a fully functioning heart again.
It's like when I met my husband- I knew right away and that's how I felt after meeting Dr Barnhart at Swedish yesterday. I've talked with 3 surgeons now but he is the one I feel most confident in. At the same time, I am still reeling and trying to adjust to the news he gave me. He does not believe that my mitral valve can be repaired and that I will indeed need a double valve replacement and soon. It is now scheduled for April 8th. I guess I didn't understand from my cardiologist how bad both valves were, she had emphasized the worsening mitral stenosis after my last echo. Dr Barnhart thoroughly went over my echo and showed us how stiff and thickened my mitral valve is, it's barely opening. And my aortic valve is severely stenotic and also has mild regurgitation. Well, it explains why I feel as bad as I do. I thought a lot of my symptoms were in my head from anxiety. I was holding out hope until recently that I'd be a candidate for minimally invasive surgery, that they could fix my mitral valve without having to replace it, but that is not the case. So I am trying to move into acceptance around this. I wish the timing weren't so terrible- life is just chaotic right now! I guess there is never a good time for this though.
Do you find yourselves preoccupied with death or thinking about it/fearing it more than you did before you got diagnosed? I know I felt this way before my first surgery too. Because I've had surgery before, I feel like I should be confident that I'll be ok because I survived it before and will survive again but I can't seem to stay in that frame of mind. I cry at some point every day. I feel myself worrying about my symptoms and not sure which are real vs in my head provoked by anxiety. Sometimes this idea about a tragic ending to my life pops into my head and I feel such sadness for the family and friends I would leave behind. Sometimes I am just sad and angry that I have to go through this again and sad that my husband has to watch me go through it. Other days I have so much gratitude that I have a treatable condition and simply that I am alive. I'm all over the place emotionally. I am seeing another surgeon at the end of next week and I am filled with both relief and dread about it! I wish I could be all Zen about this all the time, but I can't seem to stay there.
Wearing red today and thinking of my fellow heart brothers and sisters. If you look closely you can see what a 10 1/2 year old OHS scar looks like.
Update posted on...
February 2, 2016
I heard from a surgeon in Chicago I've been waiting on getting a second opinion from and he believes I'm not a candidate for minimally invasive surgery, and that I will need a full sternotomy to address both valves at one time. I sought him out because he is very skilled in minimally invasive approaches, so I am very depressed to hear this. I am still seeing another surgeon in Seattle in just a few weeks for my third opinion. I have been holding out hope that I wouldn't have to go through full open heart again and I am having a lot of trouble accepting that I likely have to. I am especially scared because this would be my second surgery and because I'd need two valves operated on, which I know is a bit riskier. It doesn't seem as common that people have multiple diseased valves so it's harder to find information on it. I'd love to hear from you if any of you have been through multiple surgeries or have multiple valves issues.
I just got my second opinion consult booked for Feb 18th with Dr Barnhart in Seattle. I've heard great things about him and I am hopeful that he can help me. I've been so stressed not having a plan in place, so I am going to try to put my worry aside until then, since there is literally nothing I can do about it. I've been having such a difficult time managing my anxiety around this and it's preoccupying my thoughts. I've already been through one open heart surgery and it was a rough and long recovery, which is probably why I have so much anxiety. So I'm trying to approach this differently than last time and I am arming myself with as much information and support as I can. I just got Adam's book and started reading it last night. I am so grateful to have found this community, where we can give and receive a kind of support only those of us with heart valve disease can truly understand.
I've been struggling for the last few months since I got my last echo, which showed my replaced aortic valve declining and my mitral valve worsening. I wasn't ready to face and I don't want to face it. I want to run away from it, quite frankly. I'm waiting on another surgical consult, trying to ready my house to get on the market, and finding somewhere else to live due to my husband's new job. Because of all the changes and unknowns, I have been filled with anxiety and deep fears. Today I came across this poem and it brought me some peace. I am sharing it here in case in helps someone else today:
Let It Go by Donna Faulds
Let go of the ways you thought life would unfold: the holding of plans or dreams or expectations – Let it all go.
Save your strength to swim with the tide.
The choice to fight what is here before you now will only result in struggle, fear, and desperate attempts to flee from the very energy you long for. Let go.
Let it all go and flow with the grace that washes through your days whether you received it gently or with all your quills raised to defend against invaders.
Take this on faith; the mind may never find the explanations that it seeks, but you will move forward nonetheless. Let go, and the wave’s crest will carry you to unknown shores, beyond your wildest dreams
or destinations. Let it all go and find the place of rest and peace, and certain transformation.
This my first journal post. I am glad to have found this community and have been so inspired by all of your stories!
I had open heart 10 1/2 years ago to replace my aortic valve. I got a bovine valve, which is now starting to decline but is not bad enough for surgery yet. Additionally, I have mitral valve stenosis that has recently progressed to the moderate-severe category and does need treatment. I am extremely scared because I have two valves affected and it's complicated to figure out the next steps, especially because I'm only 40 and want to minimize how many times I have surgery on my heart. I've have had one surgical consult, and he suggested I try balloon valvuloplasty on the mitral to see if we could avoid needing a replacement on that one. He said I'd still need open heart on the aortic, though and it's hard to say when. I decided to get a second opinion because I was concerned about how relatively few of the balloon procedures he has done and also want to be sure they are looking at the whole picture. I have been waiting for weeks to get all my records to this surgeon in another state. Once they get everything, I will have a phone consultation with him. In the meantime, I have so much anxiety and I burst into tears nearly every day at some point. I just need some clarity and need to know my next steps. How did you pick your surgeon? I am so overwhelmed by that alone. Sorry for the long post!