Sommer Russell Thanks Kirk! I am doing very well and am making way up the mountain, and not at all in a graceful ma ... Read more

Dan Vechiola Hey Sommer! I can relate to your story very well. I was an athlete my entire youth and while home fr ... Read more

Dan Vechiola Hey Sommer! I can relate to your story very well. I was an athlete my entire youth and while home from college for a sore throat my family doctor heard a heart murmur and it derailed my life. I was then urgently sentto see a cardiologist and he confirmed the heart murmur. I asked what is a heart murmur? He said "your heart is leaking." In my 18 year old mind, I envisioned blood leaking out the bottom of my heart lol. Went for an angiogram which confirmed my heart valve was not closing all the way and it was regurgitating. I didn't go back to college and stayed home and attended a community college. After a few quarterly visits with the cardiologist who terrified me I decided to discontinue my visits with hm and avoid doctors all together unless for new jobs or if I was really sick. Fast forward almost 40 years later due to a dizzy spell (which turned out to be very high blood sugar) and the first ride of my life by paramedics I am back in the system. I spent a week in the hospital not because of the blood sugar but because of my very popular and exciting heart murmur which was of great interest to all the doctors, residents and fellows of this teaching hospital. I felt like I was "on the run" for the last 40 years and was captured lol. Well now at 57 I seem to be a lot more mature about things and did all 5 days of testing with a mature positive attitude. The conclusion was "it was time" because my aortic valve was serious. I feared this all my life and here I am captured and in the middle of it my fears lol. The only thing different now 40 years later is that I have a wonderful wife and 2 great daughters 27 and 25 experiencing all of this with me and were/are terrified. So now I have my tail between my legs and realize it is not just about me anymore but also about my loved ones who care about me deeply. I always knew how they felt but this experience cemented it into place. So after a bunch of research and thanks to this community and Adam's book I have selected a top 6 hospital near me and their Chief of Cardiac Surgery on to do my surgery. I am fortunate my aorta didn't get too large (its at 4.1) and my arteries are clear. However, my aortic valve is VERY tight. I guess the moral of the story is as we get older and have a family its not just about us anymore but us and all our loved ones. Hang in there. I have eliminated much of my fears by selecting a great hospital and a great surgeon and am putting my fate in their hands of which I have a lot of confidence in.

Kim Lonergan Hi Sommer! I relate to your apprehension about the surgery! I had the exact same feelings! I had mitr ... Read more

Kirk Bepler Hi Sommer - I can you from the time I found out I was going to possibly need surgery I went through e ... Read more

Kirk Bepler Hi Sommer - I can you from the time I found out I was going to possibly need surgery I went through every test I could to confirm that I needed it, always thinking the next step would be Ok "We can still watch and wait". As that has been the answer for years, since I was feeling fine it was kind of a shocker to know I was going to need to go down this path. A good friend of mine told me that being in a time that this can be repaired you need to thank god that there are surgeons that can help you, another good piece of advice she gave me was you need to go at this with a clear and positive mind. I personally that can be hard, you just have to let the darkness go and know your in good hands and your going to get through it.

On the day of surgery I don't remember much, was I nervous and scared nit going to lie "Yes" did I also clear my mind the week leading up to surgery "Yes" and it did help. I remember the surgical prep room, and your husband should be able to be there with you. I talked to surgeon and the anesthesiologist, I remember him saying that they would give me something to relax and that's all I remember. The next thing I know is waking up with the air tube and the nurse saying you need to stop holding your breath so we know you can breath on your own, when they turned off the machine we had a wait 10mins as I breathed on my own before they would remove it and I kept holding my breath watching the clock.. I also remember my other half, friends and neighbor starting in the face when I woke up. I also do remember pointing and scribbling while I had the breathing tube still was "Give me water" It took about 3 times for me to relax and not hold my breath and get that breathing tube out, I will say there was really no pain not like I thought there would be. My entire stay in the hospital did not have much pain at all.

So just know when it's time for your surgery everything will be Ok, you will be in good hands. Another tip is not to read everything on the internet, as everyone has their own options and some of the articles are way out of date and over researching can get your anxiety up.. Trust me on that one, my cardiologist even told me to stop with the Googling...

Sommer Russell So Kim and Kirk- thanks for the encouraging words. AND- I never paid attention to anyone mentioning ... Read more

Kirk Bepler Sommer how are you doing? Hope this finds you well. Yes it was a very long 10 mins, that part I remem ... Read more

Sommer Russell I'm doing well, Kirk. Thanks for asking. I had one of my pre-op surgeries about 2 weeks ago- Uterin ... Read more

Sommer Russell Thank you for such empowering words! We really do share a similar story. However, John, you have as ... Read more

John Schutte Sommer,

Great to hear back from you. I wrestled with the timing of my surgery and whether or not t ... Read more

John Schutte Sommer,

Great to hear back from you. I wrestled with the timing of my surgery and whether or not to repair the aneurysm as well. Both the cardiologist and surgeon at Cleveland Clinic put me in a half year holding pattern to try to assess whether or not the aneurysm was stable. Ultimately, I elected to proceed with the surgery because I was not comfortable living with the mortality risk associated with sudden dissection of my aorta, which was ~5%/year for a ~5cm dilation. I agree with your specialists at this point: 4.3 is small. Hopefully you can get a sense of the stability of your aorta before valvular insufficiency drives you to surgery.

My recovery was not without its setbacks--a somehow manage to score a trifecta of pneumonia, arrhythmia, and a pericardial cyst. However, once on the other side of this minor setback, I was firmly on the road to recovery. You should be able to navigate stairs after returning home and even open the fridge door with the right technique, although doctors will counsel you against it. Riding in the back seat of the car for a bit takes some getting used to;-)

It took longer for me to find mental peace than it did to recover physically. Prior to surgery, I was healthy, active, and "unstoppable" in my career. The experience of OHS made me acutely aware of my own mortality and the fragility of the human experience. Once I reached acceptance, I seldom thought of the experience. Today, I am back on active flight status and leading a large organization in the Air Force; no one has any idea of my own experience with OHS.

As for your valve choice: I originally hoped to be able to repair my bicuspid aortic valve. While under the knife, my surgeon, Dr. Svennson, made two unsuccessful attempts before electing to replace it. I elected to go with a tissue valve because I was very reticent to go on blood thinners for the rest of my life, which carry a very high cumulative risk of internal bleeding. The data on lifespans for tissue valves is based on historical averages that might not accurately capture the current state of the art in tissue valve construction. Also, as an additional data point, tissue valves tend to fail gradually as a normal valve does. In contrast, from what I have read anecdotally,, mechanical valves tend to last longer, but fail catastrophically when they reach the end of their serviceable life (e.g., the valve sticks closed). I am hopeful that by the time my valve fails, TAVR techniques have been perfected so I can avoid another OHS!

Hope I answered most of your questions. Please fire away with more if you have any!

Godspeed!
John

Sommer Russell John, thanks so much and let me begin with thanking you for your service. A little side story that I ... Read more

Sommer Russell John, thanks so much and let me begin with thanking you for your service. A little side story that I hope brightens your day. My children had a lemonade stand this weekend at a festival type thing, and we came across a large pack of American Flags that had been tucked away in a moving box. The kids passed these out to Veteran's walking in the crowd and thanked them for their service. It was a great thing to watch!

So, my Cardiologist and my husband work together in the Cath Lab and have a great relationship. He asked my husband to prepare me for OHS this year around Christmas break. The cardiologist and the surgeon have consulted and decided that my aneurysm would need to be fixed as well. I was under the impression that my valve was causing an eccentric jet that was pushing on the aorta wall causing the aneurysm, but he said that it is a separate problem on it's on, but is seen hand and hand with BAV. Said my aortic wall is thinned and that the aneurysm wouldn't ever go back down. I have tried to find a name for a thinning aorta so I can put to use my PhD in WebMD. LOL. Haven't had any luck, and I don't have a PhD in anything.

I was really upset about having surgery over Christmas Break and flat out said no. That is a horrible time to have surgery. I had rather had it sooner or later, but not at Christmas... Also, I was able to track down my records from the early years of my heart murmur. I was floored to learn how much information that I and my parents were never made aware of. We were always told it was just a silent murmur that wouldn't give me problems until I was in my 80's. However, in reading year after year of follow ups, it was documented much differently. They even documented talking with me when I was 18 years of age about pregnancy and the increased risks of my children having defects. I can promise you that no one ever talked to me about pregnancy. That is a conversation that I would remember! My last visit with the pediatric group was when I was 19, and they even noted at that time I was complaining of being SOA and tired, but only suggested a follow up in 2 years. Obviously, I didn't do that.

The mental part has me really broken. Your statement, "OHS made me acutely aware of my own mortality and the fragility of the human experience." Yes indeed. I almost awake at 2 am every morning and wonder about death. I really wonder if I worry more about it than anyone else does that has OHS hanging over them. I worry if I have done enough for my kids and if they will be good people if I didn't wake up from OHS. I wonder how much my husband could endure without my partnership in raising the children. I look at our old house and think, this is too much for my husband- raising 3 kids, working full time. I have even thought about suggesting downsizing to something newer that doesn't need so much upkeep. It is crazy what your mind wonders too when everything is silent.

How come no one knows of your OHS experience at your work? I mean, why do you not tell them? I have had a really hard time telling people about my need for OHS. I haven't even updated my parents (I see them on a daily basis) that my cardiologist wants to move the date up and not even wait until next Spring.

I'm not scared about the pain. The only way I can look at the pain at this point is that pain will mean that I am alive. I worry about the nausea and vomiting associated with pain meds and anesthesia. I can't even stomach a pain pill with out vomiting. I can't imagine how I will respond to the meds for OHS.

The valve- I feel like the mechanical valve is my only option at this point. My surgeons are really great and efficient. However, they do things in a set way, but do it very well. They likely won't try to repair BAV, but will just replace. I think they would use a tissue valve if I insisted, but my husband really doesn't want to chance on this. I tend to play everything safe. I'm not much of a risk taker, and I'm not a strong enough person to say no to the mechanical valve. If there is a slight chance that I would ever have to have OHS again, I wanted to go with the safest bet against it. For me, that is the mechanical valve. I do believe that TAVR will progress and that you won't have any worries about getting your valve replaced. However, at my hospital, they do TAVR for complicated cases only. I recently set in on a meeting with the TAVR coordinator and was feeling her out about TAVR for people like me down the road. She said that she didn't feel that our facility would ever support TAVR for uncomplicated cases. Said our surgeons are just to good and efficient at fixing people. Said that TAVR comes with it's on issues and that risk versus benefit just isn't there. I had to say, this felt very backward in thinking.

Sorry for the lengthy post. Wrapping it up now...

I hate the idea of being on Coumadin. I watch people come in and out of the hospital from having heart attacks related to internal bleeding (usually GI) because of the anemia and the stress it puts on the heart. I understand how risky it is, but I am hopeful that soon other medications will be approved for mechanical valves. I know they are doing trials as we speak for Eliquis, and I am hopeful to be switched when this becomes approved. At least I wouldn't' have to do the constant checking of my INR like you do with Coumadin. I will discuss the use of a tissue valve with the surgeon to get his opinion.

How long did your surgery last with them attempting to repair your valve, then replacing and then replacing the aneurysm? What was your first memory after waking up? Did you dream while your were under?

John Schutte Sommer,

Wonderful to hear from you. Sorry that it took me a few days to respond; I have been in Ver ... Read more

John Schutte Sommer,

Wonderful to hear from you. Sorry that it took me a few days to respond; I have been in Vermont for a workshop for the past week and just returned late last night. The story of your children handing out flags is heart warming. Sounds like you are raising them right:-)

From what I can tell from the literature, there is an unresolved debate within the medical community over whether the cause of aneurisms for people with BAV's is hematological (e.g., the eccentric jet you describe) or whether people born with this congenital defect have a latent tissue deficiency that makes them more prone to aneurisms. In acknowledgement of the former theory, my surgeon aired on the side of caution post surgery and recommended that I refrain from lifting more than 50 lbs, which I have loosely complied with.

Like you, I was hyper sensitive to the timing of my surgery based on worst case thinking. In my case, I wanted to ensure that I underwent surgery after my eldest son's 6th birthday in August because of baggage that I carried from my own childhood. My parents informed me of their plans to seek divorce on my 6th birthday. Like you, my murmur was mentioned numerous times during physicals with my doctors, but only in passing and never as a source of concern. Like you, I had a hard time coming to grips with the fact that I might not be able to be there for my wife and children. The hardest thing that I have ever done was to write letters to my wife and children, to be opened posthumously in the unlikely event things went badly. This was far, far more difficult than deploying to war on multiple occasions, even harder burying friends lost in combat. The thought of not being there for my wife and children felt, for a time, unbearable. However, I found that once I got through writing those letters and storing them in a safe place, I could focus more fully on being present with my family in the time I had before surgery. The letter writing process helped clarify, acknowledge, and accept my own mortality. Perhaps they could do the same for you? Like me, you are going to get through this and be stronger for it.

The post-surgery pain is manageable, even using only Tylenol within a week of surgery.

As for your choice of valve: my one piece of advice is to make sure you are comfortable with valve you elect to receive. This is your decision to make and not the surgeons, even if he is a friend of you and your husband. You are the only one who will have to live with it. My choice to receive a tissue valve was based on both not wanting to have to deal with Coumadin and wanting to remain in the military. As you know, there are risks and requirements associated with taking blood thinners. I read more medical studies than I care to remember about whether or not the cumulative risk of internal bleeding associated with a mechanical valve outweighed the mortality risk of a second OHS for people our age. I am very comfortable with my choice, and am particularly grateful that I do not have to be reminded of my condition with frequent blood draws for INR readings. However, the inevitability of another surgery looms somewhere in the distance. The decision is yours to make, and yours to live with. You can't go wrong either way!

Surgery itself lasted over 6 hours due to the 2 unsuccessful attempts to repair the valve and the need to perform the delicate work associated with my aneurism repair near my sinotubular junction. I was none the wiser! My first memory coming out of surgery is of feeling very groggy while being cared for by the highly capable nurses in the ICU. I have no memory of dreams while I was under. The memory that burns most brightly for me, though, is the loving look on my wife's face as she came to visit me for the first time.

In the first year or two after surgery, I talked about it with peers to help process things. However, now that I have moved to a new assignment, I tend not to talk about it at all, largely because the experience has faded into only one of the many, many things that have shaped me into who I am today.

Hopefully this is helpful in some small way for you. Please fire away if you have any more questions.

Best, John