Sue's Journal

My symptoms are definitely changing and it seems to have almost come on overnight. I just checked my BP and it has been consistently on the low side (102/58 this morning)…I take 2.5mg of Bisoprolol to keep it low but wondering if I should ask my cardiologist about discontinuing. I am more fatigued than ever. I get up early 6ish, but then within an hour I’m dozing off again and it takes me a long time to get anything done. I can feel a thumping in my chest almost constantly now. A bit concerned because I live alone and going to hospital feels like too much exertion, so back under the covers I tend to go. I did go for my usual walk yesterday with a friend but much slower and not as far, and when I came home I crashed. Can anyone else relate to such fatigue and low stamina? Hard to imagine waiting another month for surgery.

As I get things done in preparation for what’s to come in a month or so, one of the things that just occurred to me is swimming. I have a pool which I use every day in the summer,  but I’m the only one to maintain it because I live alone. The solar blanket will be next to impossible to pull over top, for a long time, and since my surgery is at the start of June, I wonder if it’s even worth opening it up then? If I can manage to swim reasonably soon after my surgery, then I can maybe figure out the rest with the help of neighbours or friends. Just wondering if I could hear from any swimmers out there—how long post-OHS, were you able to get back in the pool? 

Good morning heart friends! Feeling so grateful for this community and what a privilege it is to have one another and to pray for one another. So many of your names and your faces have come up in my devotional time with the Lord this morning! No one knows our hearts better than him and he is worthy of our trust. God bless you! 🙏🏻🙏🏻🙏🏻❤️‍🩹❤️‍🩹❤️‍🩹

I had my 2nd in-person meeting with my surgeon on Wednesday. During the 3 weeks leading up to it I was still deciding between her and another surgeon, and was unclear as to the type of surgery I’d have. I prayed and enlisted a whole army of prayer warriors to get this clarity. 

Part of my uncertainty stemmed from hearing that at least one other person experienced a reversal of their stenosis—I was skeptical at first, but then I felt this still small voice asking me at 4 am, “Nothing is impossible with me…do you believe that?” The question stuck with me…for hours. Many walks in the woods later and much wrestling over this for the past 3 weeks, and another question kept coming to mind, one that had been doing so over the past 20 years, but especially the last 2 years since I retired. It was, “Am I trustworthy!” Yes, Lord. “So do you trust me?….with everything and with everyone?”
This had challenged me greatly with parents who had been sick, needed care, and then eventually passed away, and with 2 siblings who depended on me greatly but who faced great challenges over the past 2 years especially. All of these situations brought me to my knees again and again because trusting God is hard. 
Yet, when I did, I always felt lead, a way opened up and situations were dealt with, usually in ways I could never have anticipated. As a result, my faith deepened tremendously. 

But there was a catch—I trusted God with them…..as long as I would be okay. As long as they had me to advocate and act on their behalf, I would trust God, but I’ve discovered in the last few months that that is really not trust at all. Because it was conditional on me remaining okay as long as they needed me. So since last November when I found out I would need surgery has been a journey of real wrestling with God as he challenged me in this final faith frontier: could I trust him with me? 

And when I heard about the possibility of stenosis being reversed, I thought, wow God, maybe you’re going to heal me from all of this! And I wasn’t really sure until this past Wednesday morning, though the picture had been forming gradually over the last few weeks. 

I truly believe God could heal me physically if he chooses to, but I actually believe he’s more concerned with healing my fragile trust in him. 
“My grace is sufficient for you, for my power is made stronger in your weakness.” This is what kept coming to mind…it’s what God told Paul when he asked for healing,  and I believe it’s what God is telling me too .

So when my surgeon said within the first 10 minutes that she believed the best thing for me was the Ross procedure, I knew that it was.  God knows me better than I know myself, and he knows that yes, he could heal me of this, but before long, I’d take back the reins and start running my own life my way again and would quickly forget my need to trust him daily with my life and those who depend on me. 

In my weakness of not knowing whether it will fail or succeed, go smoothly or have complications, I will need to trust God daily going forward. Faith isn’t about knowing the outcome, or having a guaranteed outcome; it’s about  trusting God to help me face whatever comes and to lead me in the steps I will need to take. Time to put on my “big girl” faith pants. 🙏🏻❤️‍🩹

It sounds like so many of you were in great shape before having your surgery! Even though I’ve lost about 25 lbs, I’m still about 30 lbs overweight, and it’s been on my mind, concerned about how I’ll do in recovery. I see my (likely) surgeon, Dr. Ouzounian tomorrow, and she will decide then if she’ll give me the green light for the Ross procedure or not. I should also find out my surgery date and hopefully it won’t be so soon that I can’t get even fitter. Just wondering if anyone can relate who has had the RP? It’s got me a bit down because I was in good shape up until 8 years ago, but ate my way through some high stress events and now I’m discouraged because, though my BAV and AS had nothing to do with my lifestyle, I feel some personal responsibility for what lies ahead.

I tried to share a link to a FB group for Ross patients and their families but for some reason I didn’t work…someone shared it with me and I’ve found the information specific to the Ross, very helpful so far. If you have Facebook (I personally don’t use it, just for this), you could search for Ross Patients and their Families….those terms don’t work with a Google search but you could find it there by inputting Ross procedure Facebook.

Called an ambulance last night because I had severe nausea followed by vomiting and diarrhea just as I was heading to bed at 10:30. Normally I wouldn’t, but these days I’m  not sure if it’s a heart matter or not, so I err on the side of caution. I didn’t just react though, I did consult Dr. Google first 🤓 and sure enough nausea and vomiting can be a sign of severe aortic stenosis, and can precede syncope.

Thankfully after 2 sets of blood work to test troponin levels and an ECG, it’s as suspected, either a bout of food poisoning, or wicked fast acting flu bug, nothing heart related. Just waiting on a friend to pick me up so I can pick up where I left off! 😴 🛌

Yesterday I met my surgeon Dr. Maral Ouzounian and I feel very comfortable with her. It was a little poetic that our first meeting coincided with International Women’s day—she’s definitely someone who has broken through a few glass ceilings in her life. 

She was very personable and spent a lot of time explaining things to me about my imaging, pointing out on the screen the problems but also the pluses (apparently I have the arteries of a 20 year old! But heart thickness of a….well, out of shape 56 year old). 

I became a bit crestfallen as she explained that Toronto General is very selective with their Ross recipients and that I am not an ideal candidate because of my age, but also because of my leaky tricuspid valve (that was news to me), and the fact that I am at least 30 lbs overweight and have a tendency to high blood pressure. Because the native pulmonary valve that would be replacing the bicuspid stenotic aortic valve has not had to work as hard, it would be like transitioning from walking to running marathons, but carrying  an additional 30 lb backpack! 😰

However, my aortic annulus is quite small (20 mm)…good for Ross but not good for tissue because it would disqualify me from a future TAVR, and mechanical is not recommended because of family health history of stroke.

So her preference is to do a Ross, pending the results of a CT, and whether or not I can lose at least 25 pounds pre-surgery which is anticipated as late April (no pressure!)  Post-surgery I would have to keep my systolic BP around 110 for at least a year. This is very daunting, to say the least  as I am in full menopause and weight simply does not shift the way it used to. I’m also very fatigued these days and she wants me to get in about 15000 steps daily…..I did about 5000 by the time I got home and then had a 3 hour nap I was so tired!  That said, I am determined. This is literally life and death for me (I guess it takes what it takes), and I know with God all things are possible…I just have to do my part and leave the results up to him. 

She has referred me to a “pre-hab” team that includes a doctor, kinesiologist, dietician and psychologist to help me with this preparation—how amazing is that! By the time I arrived home, the coordinator had already been in touch, so I’m glad I don’t have to figure this out alone. So the next things on my to-do list are a new Fitbit and walking pad so I can walk when I’d otherwise be sedentary….(putting it right beside the recliner so I can remind myself that the recliner is for POST- surgery! 😅)

Despite my trepidation, I do feel encouraged and motivated as never before, and my support network of friends and family have offered to help me reach my goal too. I’m very blessed and thankful. 🙏🏻❤️

I finally heard from this new surgeon’s office and I have my consultation on March 8. I’m very glad about that but also feeling some trepidation, more inklings than evidence upon which to base a decision., so I’m praying for wisdom and discernment. While the first Ross surgeon I found returned my call the same day, this one took over a month. The first, Dr. Ashe, has performed over 300, while the one my cardiologist sent the referral to does about one per month, according to her secretary. Dr. Ashe works in a smaller less prestigious hospital but his patients say things like  “it’s as if God worked through his hands”, while Dr. Ouzounian wears a LOT of different hats…surgeon, head of dept, professor, researcher—she’s all over the internet and only a few days a month doing any surgeries, which makes me wonder if she’s TOO busy doing things other than surgeries? I esteemed her more when I found a video of her and Dr. El-Hamamsy presenting together about the Ross at a conference. Her secretary was very curt and boastful about this being “THE hospital to go to in Canada for your heart” when I asked questions about her experience, while Dr. Ashe’s secretary was very helpful and answered all my questions patiently, understanding what a big personal decision this was, but was straightforward not going on and on about the reputation of the hospital. 



These are the reflections I’m having once again as I toss this decision around for the umpteenth time. Hard to know how much to depend on inklings over evidence. We’ll see how the in-person meeting goes on the 8th and if I’m still hesitating,  I will ask for a referral to Dr. Ashe. It does make me a bit nervous delaying my potential surgery date with each new referral, but I keep reminding myself that it’s important to be at peace with the decision as it’s my life not something frivolous. 😰

So it’s been almost 1 month since my cardiologist made the referral to my new surgeon and I haven’t heard anything, even after leaving 2 follow-up messages. If I had stuck with my original surgeon I likely would have already had my surgery, but because I wanted to investigate the possibility of the Ross procedure, I’m now in this limbo. The good news is it has given me more time to get in better shape, even though my stamina isn’t great. But I’m a little concerned—I get shortness of breath and occasional dizziness, but cardiologist said because I haven’t experienced heart failure yet, as in fainting, that I should be okay. I wonder if I should just wait until a worse symptom happens and then go to Emerg? Cardiologist isn’t responding to email or phone messages…is this typical? (If there is such a thing?) 

Is anyone else having difficulty scrolling through the site--I get to a certain point and then it just stops loading...wondering if there's an issue with the server? Adam?

I just finished reading Adam’s book—thanks Rose for recommending it! I appreciate so much that one of our community decided to provide this gift—I honestly couldn’t find anything else online written from the patient’s perspective in such precise detail. And now we have this website and supportive community too! Thank you Adam for connecting all of us, and thank you my dear heart brothers and sisters for your honest questions and detailed answers to others’ questions, including mine. I know I am far better equipped to face my future as a heart surgery patient than I ever would have been without you all. ❤️ 

Yesterday I finally heard from my cardiologist and we spoke for almost an hour for which I was really grateful. He answered most of my questions to my satisfaction and I even answered a few for him, thanks to the many resources of heart valve surgery.com! 😁

He agrees that the Ross procedure is worth pursuing and he is referring me to a very reputable surgeon right here in Toronto who performs one at least every 2 weeks. Her name is Maral Ouzounian and she is also very passionate about patients knowing about this option….which begs the question—why don’t they? So this is going to be both a good news story and a cautionary tale, because the reason is not medical, but economic sadly. 

I know we Canadians boast about our universal health care, but the reality is that, though, we have relatively good health care, we will never have the best, and never anything to rival what some of you have been able to obtain in the US. “Healthcare for all” actually means we will be provided with options that are “good enough”, as in, a regular valve replacement would work fine for me, even though a better option, given my health and age, exists but wasn’t deemed necessary, so it was never offered. Too time consuming and too expensive. What??!! My health is worth it, all of our lives are worth it. I would have used my life savings to go to the US if that’s what it took. Thankfully, I don’t have to, but please please please, fellow heart warriors (and especially my fellow Canucks),  do your homework, and don’t be afraid to push for 2nd or 3rd opinions! I’m once again so grateful to Adam for creating this website—your work has become as important to us on this journey as the doctors themselves! ❤️‍🩹🙌🏻

In my latest session of creeping your journals (sorry for sounding so stalker-ish…I’m just a harmless retired cat lady with lots of time on her hands, I promise! 😻)…….I came across this video (thanks for posting Shannon!)

One of the last things the doctor on the left says is that there is little evidence of the duration of a TAVR but that it’s likely shorter then the first tissue valve replacement and it would be very difficult, if not impossible, to replace a second time, so if required (in younger patients), a 2nd OHS is recommended and THEN a TAVR. It is also more prone to strokes and not recommended for those with a BAV for that reason due to extra calcium buildup. These are Cleveland Clinic doctors 3 years ago. Good to know when making this huge decision.


http://2207941.mediaspace.kaltura.com/media/t/1_8vtufon4/70471861?utm_source=marketo

Logistical question about surgery and the person who accompanies you—don’t have kids or a partner so I’ll be asking a friend—I’d like to be able to give them a bit of a heads up as to what to expect. Will they need to be there the whole time or just when I go in and out of surgery? Should they stay until I wake up at least or does it really matter? Have to be practical, but at the same time, realistic as to what I will need. I’m used to being the advocate for others but not having one of my own, so this is very virgin territory. Would love to hear from my heart friends! 💕

Hey heart friends! I can’t believe how much of my time I devote to AVR surgery research now —I haven’t done this much since my uni days! 🤓 I’ve stepped into a whole new world, and it’s both daunting and fascinating at various intervals. My sleep hasn’t been great since I got the news, not because I’m upset, but my brain is on over-drive as I digest all this information. 
As I mentioned in an earlier post, I want to learn more about option #3, the Ross Procedure so I checked to see how many surgeons do it here in Ontario—only 4 (that I could find….and a fifth had closed his practice). I agonized over all the “what-ifs”, as in “what if I’m too old?, what if I’m too unfit?, what if the waiting lists are too long for me to wait? “….but I called and left messages  anyway, not expecting anything, but hoping and praying. Less than 5 hours later, I’m sitting in a car wash lineup when my phone rings and it’s the secretary to Dr. Kassem Ashe, the first message I left. She proceeds to tell me that I am not too old and if I can get my cardiologist to send a referral with all my latest imaging, he would likely prioritize a consultation based on the fact that I am symptomatic. I was elated, even more so when she told me that he had performed over 300 Ross procedures with only one re-operation among them.  I feel so grateful to all of you and especially Adam—without this website I might never have known about this other option. ❤️🙌🏻🥰 What a priceless gift this is! 

Here’s Sue’s question of the day….would love to hear from anyone who’s had the Ross procedure done and how that experience was for them, also how their recovery has been since? I’m not sure I’m young enough to have it (56) but it looks worth inquiring about. There’s only one surgeon here in Toronto who performs it from what I’ve read.

Okay, last one for awhile, I promise! 😇 is it really necessary to get a power recliner with remote rather than just buttons on the side? They’re much harder to find but my friend, whose husband had OHS insists that I won’t be able to do buttons.