Update posted on...

February 23, 2016

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.
  Sending warm thoughts of peace to you, Kate. Best wishes on your upcoming surgery. Mindfulness is a wonderful tool. Best wishes!!
Cathy Slipski  Thinking of you! Like you told me when I was gping for surgery....you got this Kate!
Gail Magnus  I had a double valve replacement for my first OHS when I was 30 (16 years ago). I had the Ross Procedure , like Adam Pick! I read "your story" and our first ... Read more
Sheila Harrison  Hi Kate I had both my mitral and aortic valves replaced 9-9-15, bovine values. I am in cardiac rehab and have returned to work. I am 56 years old. I feel so ... Read more
Wanda Mroz  Best of luck to you. Everything will be fine and you will feel much better. Hugs
Kate Watson  It's easy to feel so alone and scared with this. Thank you all so much, it really helps to have all of you here!
Alina FH  Kate, I did not have two valves replaced at once, but I had a LOT of work done at one time - there were 3 surgeons in my surgery, and 3 PAs and they were all ... Read more
Kate Watson  Yikes, Alina, I didn't realize how extensive your surgery was! It is amazing how resilient the human body is and I need to remind myself of that often. It's ... Read more
Alina FH  Aw, thanks, Kate! One day at a time, and some days are better than others. But, YES, you are right - our bodies are amazing machines. :)
I found "The One"- my cardiac surgeon
Journal posted on February 19, 2016
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.
Daryl McCallum  Kate you picked a good team there. I too had Dr. Barnhart and as far as I'm concerned he is the best. My wife and I interviewed three different surgeons and ... Read more
Gail Magnus  Hooray...you found the one! Congrats! :-)
  Congrats on finding the right surgeon! Sending warm thoughts of acceptance as you move towards surgery. Best wishes!
Robert Osmachenko  Your intuition serves you well. I'm glad you feel comfortable with Dr Barnhart and I'm sure his team lines up with his high standards. Also glad you will ... Read more
Bob Fessler  I'm glad to hear you liked Dr Barnhart as he's the surgeon I'm thinking of going with when the time comes. I've only heard good things about him.
Lynee Casper  Good to hear you have some of the big considerations covered, your Doc sounds great. Best to you as you approach planning and preparations.
Sophia Ridley  Faith in your surgeon is paramount, glad to hear that you've found the one.
Alina FH  Good luck, Kate. It felt the exact same for me. It's going to make all the difference!
Kate Watson  That's great to hear Daryl! I am still scared to death about this. He said my recovery will be longer than my first operation, which is very very hard to ... Read more
Wanda Mroz  Yay.... I felt the same!
Update posted on...

February 9, 2016

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.
Emily Rowley  Yes, my mind was constantly preoccupied with the same thoughts before my surgery. Going into my second Open-Heart Surgery it hit me more like a tonne of bricks. ... Read more
Wanda Mroz  I thought those thoughts before my shoulder surgery too. Not all the time,but now and then. I was irritable and snappy. But I was trying to get everything ... Read more
Kate Watson  I take xanax at night when I need it too, Wanda and it definitely helps. I'm meditating, doing yoga, visualizations, going to therapy, trying to stay busy, ... Read more
Shannon Sullivan  I too have these thoughts. I have had my diagnosis for a long time but my symptoms started to escalate over the last year and this past December my cardiologist ... Read more
Casey Overcamp  I can totally relate to the roller coaster. Consumed by thoughts of mortality and then grateful that we live in a time where it's fixable. Hang in there.
Gary Stripling  I remember the moment I was wheeled into the OR (after being delayed some 2 hours). Calming sedation had worn off by this point because I was the last surgery ... Read more
Sophia Ridley  My faith has been strengthened through this experience and I've spent time pre and post op in church. I had a blessing days before surgery which really calmed ... Read more
Meredith Bray  Yes, the thoughts that brought the most tears were the ones about, "He's going to miss me so much" even two years later I still get blurry eyes. Those thoughts ... Read more
Wanda Mroz  Definitely ok to feel them.
Cheryl Bass  Kate, I have surgery on March 8th and I think these thoughts to some degree go through most peoples minds that are going to have OHS, I have been trying to ... Read more
Kate Watson  Thank you all for sharing your stories and insights on this. It really helps to know that I'm not alone in those thoughts. It's been such a delicate balance ... Read more
Lynee Casper  Wow, I hear your thoughts in my reflections too. I also worry that I have not done enough, that I could have done more to be a better person, wife, step-mom ... Read more
Here's my newest picture!
February 5, 2016   Like
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.
John White  You look simply beautiful!
  Great picture!
Kate Watson  Thank you guys!
Whitney Nelson  Love it!!
Christine Oliva  Looks really good. I'm very grateful for surgery but will be glad when my scar is not as noticeable. You really have to look to see yours. Thank you for posting and God Bless.
susan kotansky  Beautiful!!!
Frances Halley  I'm inspired! I'm going to wear red tomorrow and show off my 6 week old scar!
Kate Watson  Thank you! And yay Frances- yes, show off your badge of survival!
Emily Rowley  Very beautiful ❤ My Pastoral Care Worker asked me "Your favourite colour is red, it is the source of your life, yet why don't you wear red more often?".
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.
Jan McClain  Hi Kate, I'm Gail Magnus' husband's stepmother, Jan, and I'm with Gail right now in the hospital. She wants to remind you that she too just had a second surgery ... Read more
Jeff V.  Kate, Did the Chicago surgeon explain how he would approach the MV problem? Does he think it is repairable? The full sternotomy is going to provide your surgeon ... Read more
Ed Miskovic  Dr McCarthy of Northwestern Memorial will do my surgery (AVR). Both him & the hospital are highly regarded. If it weren't for Northwestern being a couple hours ... Read more
Sophia Ridley  My surgeon estimated 90% success keyhole and 99% open for my MV repair, so open it was. For them to have access and to see and address addition issues (I had ... Read more
Kate Watson  Thanks for the message, Jan. So thoughtful of Gail to send this message along while she's in the midst of recovery! Send Gail my best wishes for recovery. ... Read more
Kate Watson  Thank you all for the input. I see why I'm going to have to opt for open so they can access both valves successfully, whether they repair or replace the mitral. ... Read more
Jeff V.  Kate, I also have a dual valve problem. When it was time for surgery, I followed the lead of my Cleveland Clinic Cardiologist who recommended two surgeons ... Read more
Rita Savelis  Last year I had 2 valves replaced (with mechanical valves) and a third valve repaired. My valve problems came from having had radiation treatment for cancer ... Read more
Ed Miskovic  Last Friday I had my AV Replacement with a minimally invasive sternectomy.(sp?). Afterwards one of the surgical team said that because I was so young (age 69) ... Read more
Update posted on...

January 29, 2016

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.
Ed Miskovic  I read your story and it sounds like you're doing what you can: learning from your own past experience; learning from other people's experience at this website; ... Read more
Jean Knappik  Hi Kate, you will be fine...I live in Pa. and went out to San Francisco to have my Aortic Valve and Root replaced by Dr. Castro. At first my recovery was rough: ... Read more
Lisa Thibodaux  I am going through the same thing. I am having another echo done on February 19th. They wanted to do surgery back in October but l asked for sometime to ... Read more
Jean Knappik  I only remember a couple of minutes on the ventilator and at that point they removed it...my surgeon makes sure to get that out ASAP he knows it is high anxiety ... Read more
Gail Magnus  Hi Kate, I live in Seattle and am having surgery Monday. We should connect!
Kate Watson  I keep reminding myself that a lot has changed in 10 1/2 years and it can only be better! I think the worst part was not knowing what to expect. But now I ... Read more
Learning to be ok with the unknown
Journal posted on January 26, 2016
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.
Sharmin Atker  Good luck with your appointment and your move. The poem you posted should be inspiring to those waiting for surgery - I wish I had seen this before my surgery.
Ed Miskovic  Thanks for the positively upbeat poem.
Robert Osmachenko  Thank you, Kate. That poem is fitting and always timely. One cannot push the river but go on faith. Leave it in the hands of the Lord.
Anxiously awaiting second opinion
Journal posted on January 21, 2016
Hi everyone,
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!
Kenny Knox  Hey Kate, welcome! I'm young like you and just had my second valve replacement surgery. I chose the Cleveland Clinic because I only live a few hours away. ... Read more
Paige Rupe  I hope you can find some peace soon with your condition. I personally have been followed by a cardiologist my entire life being affected by a congenital disorder, ... Read more
Ashley Cross  I pray that your second opinion helps give you some answers!! I meet with several surgeons first. One surgeon was very rude and said I was faking everything. ... Read more
  Hi Kate, best wishes to you. I am sorry you are going through all of this. It doesn't seem fair, does it. I hope you find support through this site as I know ... Read more
John Schutte  Kate, glad that you've joined this community. Like Kenny, I was highly impressed with Cleveland Clinic and Dr. Svensson, who performed my first bovine AVR ... Read more
Kate Watson  Thanks for your input and support, everyone. I really appreciate it. It's comforting to know that there are other people, including younger people who are ... Read more
Robert Frederick  Kate: Welcome!

I read your story. You have had a hard time with your previous experiences and I can understand why it starts to come back for you.

I can ... Read more
Kate Watson  Thank you Robert, thanks for sharing your experience!
Catrina Glover  Kate,
Before I had my 1st surgery I definitely got a 2nd opinion. I think that is a wise thing. Im about to have a 2nd aortic replacement (getting a mechanical ... Read more
Michael Shaughnessy  I had several opinions, including Lars Svenson at CCF, prior to my AVR and aneurysm at age 43. I chose Akan Markowitz at University Hospital in Cleveland. ... Read more
Kate Watson  Catrina- I know what you mean. I don't want to be on coumadin but I can't go through open heart every 10-15 years either. I'm sorry you have to go through ... Read more
Kate Watson  Thanks Michael -that's very inspiring to hear! I'm so glad you are doing so great. I am just collecting all the info I can and going to several surgeons until ... Read more
Melinda Queliz  I am not able to give any advice because I face my first open heart surgery in March however I just read your story and some posts and said to myself 'Wow, ... Read more