Sue's Journal

Hello everyone! Well, it has been a minute since I last posted on here and I have really missed this community! I had my AVR last June, along with a tricuspid repair and a single bypass, spent the summer recovering and made really good progress. However, I  never seemed to turn a corner on the severe fatigue I was feeling until only a few months ago. 

  It finally let up and I began to feel physically normal again, around Christmas, but because I had struggled with debilitating fatigue for so long, and being predisposed to depression, it has taken me a long time to fully come around. The depression was pretty intense at times and I wasn’t able to keep up my rehab, or do very much of anything really. It completely took me by surprise because I was initially doing well in recovery and looking forward to the future. 
Coupled with a few disappointments and having a lot of time on my hands, being retired, it became a bit of a perfect storm that I didn’t see coming. It just continued and I began to fear that that this might be my new normal.  In the bleakest moments I began resigning myself to probably dying young , simply because I wasn’t able to do what was necessary to take care of myself. It was AWFUL and I have never felt so alone. How could this be when I had survived such a complicated surgery and was excited for  this new lease on life?! 

In all honesty, the mental/emotional recovery has been far more difficult for me  than the physical recovery from surgery. A strange thing began to happen, which I can now see was a way of coping with all this. I inexplicably went into a complete state of denial over the fact that I had undergone open heart surgery! I didn’t consciously do this, but when going to rehab became too much, it seemed to naturally follow that I’d stop checking in with this community. I mean I knew I had surgery—my scars were clear as day, and I was still taking my low dose aspirin and Bisoprolol. But I was minimizing how serious it had been—all my paperwork, scans, and post-op materials, including Adam’s book I shoved away into a corner of my office so I wouldn’t see them; I lost touch with a heart friend I had met earlier in this journey, and when friends asked how I was doing, I said “great”, and then changed the subject. 

But in the last month or so, I have felt things begin to shift again for the better, thank you Jesus! He has been with me faithfully, even when I didn’t feel his presence, and the dawn is definitely breaking, letting the light in again. 

I see my cardiologist this Thursday for my 6 month check since seeing him post-op. I don’t know if he’ll understand all this other stuff, but I feel the need to let him know that this, too, is something heart patients might experience. I don’t want to frighten anyone on here though—it doesn’t seem to be all that common; but I do want others to know and be encouraged, that if they do experience a recovery similar to mine, that they can get through it too.  

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Yesterday I hosted my own “Celebration of Life” party with many friends who were indispensable to me during my pre-, during and post-surgery periods, but who have meant everything to me for many years and many reasons anyway. I thought, heck, why wait until we die to tell the people we love what they mean to us? It was supposed to be a pool party/bbq outside but some freak cold front swept through and pushed us all inside (all except the kids, who will swim in anything! :)

It was great fun and a wonderful opportunity for people from different parts of my life who’ve never met to connect and hear why I value each one of these precious friends as if they were family. 🥰❤️

Hey heart friends! I’m looking to get silicone scar tape or scar sheets, also an oximeter or fitness tracker that checks for afib that I can wear while exercising.  Any recommendations for either?? Many thanks—hope everyone is enjoying these last fleeting days of summer! 

Just hoping others can weigh in on something I’m experiencing….I feel good generally and especially since getting a good report from my surgeon on Monday. However, I still experience debilitating fatigue to the point where I get up early to try and get a few things done (yesterday it was a load of laundry and a 6k walk, then had to rest, felt like I wouldn’t be able to stay awake, before taking a friend out for lunch). Today I had to cancel my plan to visit relatives this weekend (my first road trip since the surgery) because I really didn’t think I’d have the stamina for it, and the fact that I was taking one of my brothers (who’s very dependent on me). It felt overwhelming, but once I cancelled, I went outside and fell asleep in the deck for a couple of hours.

I know we can’t really compare with others but I’m just wondering if anyone else has felt this kind of fatigue at this point (I’ll be 10 weeks post-op this Monday, just thought I’d be able to do more by now.). Thanks heart friends! ❤️‍🩹

I had a wonderful reunion with my surgeon yesterday for our 2 month follow-up. She confirmed that I can resume all activities as I feel able. I actually felt sad when we parted—such a strong connection to the person who essentially saved my life. She told me to keep in touch and let her know how I’m doing. Feeling strong and grateful to God for this new life! ❤️🙏🏻🙌🏻

This just popped up in my news feed—CC study on artificial sweetener connection to blood clots. a lot of foods that are branded “keto” contain erythritol.

https://www.cnn.com/2024/08/08/health/erythritol-blood-clotting-wellness/index.html

It’s been 8 weeks today since I had my surgery! Seems incredible. Prior to my AVR, myTricuspid repair, ligation of left atrial appendage, and surprise single bypass, I often felt like the day would never come, and now it’s hard to believe it’s been 2 months! Just want to encourage anyone who’s awaiting surgery and feeling anxious—all totally normal, but I can honestly say that this is a journey I have no regrets about taking. God has been so good to me every step of the way and I am so grateful for the new appreciation for life I have and for this wonderful and supportive community of heart brothers and sisters. May you too be blessed with God’s best for you! ❤️💕🙌🏻🥰

6 weeks post-op today and saw my cardiologist for the first time. Great news—he’s taking me off almost all the meds minus baby aspirin and my statin (contingent upon cholesterol bloodwork in September). My heart looks strong and healthy, and scar is healing well—the right ventricle is almost as strong again as it should be and arteries are clear. He believes I needed the bypass because of all the activity in the first surgery and the fact that my right coronary artery was very tiny—-now it’s a big vein from my leg! So relieved to know this wasn’t due to any blockages that were missed. He said I can start swimming again (gently), driving, and that as of September, I should be able to resume all normal activity, including a road trip to Nova Scotia! Praise God! ❤️‍🩹🙏🏻🙌🏻💃

Thanks everyone for your feedback about my scar—nothing like having it featured in Adam’s latest newsletter!  😂

I was inquiring  to see if it was healthy to be this red 5 weeks out, but I may have given the impression that I was asking for vanity reasons. I’m actually very proud of my scar—it is a constant reminder of the preciousness of this second chance at life. I just want to make sure everything is healing as it should. Your comments have been very encouraging and very reassuring! ❤️‍🩹❤️‍🩹❤️‍🩹

I am 4 weeks post-op tmrw. The area of my incision feels a bit like a sunburn, especially when it comes in contact with fabric. I sometimes get a pain on the right side of my chest, especially when I take deep breaths.

Sleep is still an issue and I took a sleeping pill last night for the first time in over a week. But overall, I am improving very steadily. 

I have greater endurance when I walk and take breaks when I get winded—biggest challenge was a steep set of stairs from subway to street level on a visit to hospital last week, and I gave into the siege of Torontonians in a hurry rather than get over to the side where I could go at my own pace….that was not fun, but was another teachable moment in this recovery. 

My latest Netflix recommendation is Human: the World Within—there’s a great episode on the heart, but every one is fascinating, just like us and our remarkable bodies! God bless everyone in this community! ❤️‍🩹🙏🏻🙌🏻

Happy Canada Day from Stouffville, Ontario! ❤️🇨🇦
I had my scheduled valve replacement/valve repair surgery, followed by my emergency bypass surgery exactly 3 weeks ago, so hard to believe! I have been progressing steadily each day, but also very slowly, which is normal I’m told—I keep hearing Rose “Be the 🐢 not the 🐇 “ and Rita, “Everyone’s experience is singular, don’t compare.”
I haven’t been posting much since coming home because I’ve felt lead to really unplug and spend time in prayer and just be still. I’ve been blessed by friends staying here to help wherever needed and who have instructed that my only to-do’s for now are to rest, receive and recover. What a blessing, praise God. 🙏🏻🙌🏻❤️‍🩹
But I think of you all daily and pray for the needs I’m aware of (Daneen, how is your vertigo? And have you returned to school? Please don’t rush that—your health is #1 ❤️)

Because of my CABG, and the vein harvested from my leg, I’ve had one trip back to hospital for a leg ultrasound to check for clots (just a precaution on my gp’s part and all is fine).
I’m embracing healthy eating, Mediterranean diet more or less, and continue to move regularly to keep things circulating as they must. 
I continue to be so grateful for this second chance at life and so grateful for all of you! I love and appreciate all the messages you’ve sent, and cartoons (Richard :), and I will spend some time reading back to see what you’ve all been up to. God bless every one of you with peace and confidence as you approach surgery, and  robust and steady recovery if you’re on this side of it. ❤️‍🩹🙏🏻🙌🏻 remember that we are the fortunate ones! 

“In their hearts, humans plan their course, but the Lord establishes their steps”. (Proverbs 16:9)
This verse could apply to my entire life, but it had particular resonance over the past 6 months, and especially the weekend leading up to my surgery on Mon. June 10. 

As many of you know, from the time back in January that I discovered the Ross Procedure, I became laser focused on that being my best option for AVR surgery. It offered such promise and in consulting with 2 surgeons well practiced with it who believed initially it was a viable option for me, the way forward seemed crystal clear. In fact the other 2 possibilities of bovine tissue, or mechanical valve were abandoned altogether. 
As a person of deep faith who has learned to trust God with this sort of thing, I had  yet to  learn that on a whole new level…it meant to trust God with the steps along the way, not simply the end game, to trust his leading not just with making the decision, “to Ross or not to Ross.” So when I received that email from my surgeon 3 days before my surgery saying she no longer felt that the Ross was a safe option for me, I was devastated. I was shocked, sad, and even resentful (how dare she after all this time and knowing this is why I chose her as my surgeon in the first place?!) 

But God knew. Had it been a month earlier I might very well have changed course and returned to the other Ross surgeon whose opinion I had sought, and who even stated at one point that he pretty much always does the Ross. As it turned out, that decision might very well have killed me. 

The lesson here was that God wanted me to trust his leading not the decisions themselves. So I prayed all weekend and enlisted others as well to do the same. And I just knew…this surgery couldn’t be put off any longer, and that the Lord had already confirmed for me that Dr. Ouzounian was to be my surgeon (that was a step)…..so over the next 6 hours, while my aunt and friend waited in the friends/family waiting area to get and transmit updates, I was having my aortic valve replaced with a tissue valve, my severely regurgitant tricuspid valve repaired, my annulus expanded to accommodate a future TAVR, and my left atrial appendage clamped. It took a bit longer but everything went well and I was put back together, sutured up and prepared for  ICU. It was around 2:30 in the afternoon, and while this was happening, Dr. O was explaining it all to my people, and saying when it was safe to visit me. 

That’s when everything went south. Suddenly Dr. O was being paged back to the OR, my friends were left stunned and confused. 
I can’t explain in exact medical terms what was happening, but essentially I was in distress, a major problem with hemodynamics….blood was not getting to my right ventricle via my right coronary artery, and my heart was beginning to shut down. So a whole new team was assembled and they got to work opening me up again to figure it out under extreme time pressure. I had already been on pump for longer than is advisable with surgery #1, so here I was again, with the added much higher risk of a stroke. In fact I was experiencing ischemia and now they had to figure out where the blockage was—it turned out to be in my barely visible right coronary artery, the only blood supply to my right ventricle. Thus began the rapid harvesting of a vein from my thigh to do emergency bypass surgery with a transfusion of 3 litres in order to revive my right ventricle which had been extremely compromised from being on the pump an additional 4 hours. 
This time there was no good news to report, only that I would be going to the ICU and was to be monitored closely for the next 24 hours. It was now 10:30, My friends could not visit but they would be regularly updated, so they went home……

When I finally woke up, it was Wednesday morning, and I was clueless…I was also pretty out if it and couldn’t remember squeezing my surgeon’s hand when asked to. The ICU nurse looked at me with a big smile and simply said I looked great and that Dr. O would be in later to fill me in. Around 3 pm, I was sitting up when in she came, beaming from ear to ear, telling me the same thing, how I looked so good,  holding my hand and explaining that we had made the right choice—with all the time on pump and this sneaky little blockage, complicating everything, an attempt to  do the Ross would have meant certain death. I was gobsmacked but instantly knew this was God leading by steps not procedures. She left saying she was catching a flight to Brazil that night to give a talk on the RP, and that now her presentation would include the essential warning to other surgeons to be very mindful of situations like mine. Who knows what difference that might have meant to another patient like me! 

I cried when she left—this was the truth bomb of truth bombs  to discover how close I had come to meeting  Jesus in person. God asked me to trust him no matter what—he knew what was going to go down, and so step by step, by his leading and my incredible team’s skill, I lived and went on to have a very normal recovery, minus one major episode of afib (my fault, for straining at one point, if you get my meaning 💩). 

I have been so profoundly impacted by all of this I’m still processing it through. But I know I was given the gift of life a second time and that has changed so much already. But more about that later….this has already turned into a novel. 😅 

Thank you all so much for your prayers and your beautiful messages of support—I’ve read them again and again, and though we’ve never met, it amazes me how this community rallies for one of its own. Thank you so much for your concern (bless you Daneen💕) , and thank you for sharing your own experiences of OHS…after all that drama, it was good to know that my extubated throat feeling like shards of glass every time I swallowed, was normal, as was the lack of sleep, the dizziness, the need to stay ahead of the pain, the lack of appetite (I only craved fresh strawberries), the glorious feeling of taking a shower for the first time, and so much more. 

I am amazed at where I’m at now 2 weeks later, but heeding all warnings to take time to heal. 
Thank you dear HVS family for being there for me in ways, maybe neither of us could  even realize…..this group is an absolute gift from God! Much love and health to you all. ❤️‍🩹🥰🙏🏻🙌🏻

Hello HVS family! ❤️

I arrived home today after 10 days in the hospital, 5 in ICU. I’m sorry it’s taken me so long to post but the tank emptied out pretty quickly and some days I just didn’t have enough to do very much that involved much cognitive activity, and the seemingly simplest tasks were monumental. Most days I could only do passive activities like listen to music  or podcasts, but reply to a text or anything along those lines required more than I had to give (that may resonate with some of you). There were some surprises and some very tense moments—a 4 hour surgery turned into 14.5 hours and 2 surgeries. More about that later. 

It’s been a wild ride so far, but I am definitely in recovery and so grateful to our gracious God and to all my loving and supportive friends and family. That includes all of YOU! Your prayers and messages were so life-giving to me! ❤️

I will explain more soon, and though I do feel 1000% better, these early days for me are slow and steady on all fronts out of necessity. As Rose says, be the tortoise not the hare, so that’s what I’m doing. I will reach again very soon but for now I am swaddled up in my recliner with my great big pjs (because you know, fluid retention) and 3 cats snoring nearby. My kind of heaven. Much love to everyone on this site. Trust God and he will do more than you can ever ask or imagine! ❤️‍🩹🙏🏻🙌🏻

Just want to share a song that has meant a lot to me, especially during the ups and downs of these last 6 months…maybe it will help encourage someone else here too. ❤️‍🩹

https://open.spotify.com/track/5EHMPGhsQY5o1pcjOejbMj?si=jDz-ZTE_QraS30uO8JftMQ

As many of you say, T-minus 1 day! 😊
Tmrw, dark and early I’ll meet my aunt at the hospital who knows this world well—-she was the director of nursing and programs at St. Mike’s in Toronto for over 40 years, and some of these people at TGH are her former colleagues. God is answering prayer and guiding it all step by step, but revealing only one step at a time. Friends came over yesterday to help me deep clean my house and remind me I’m not alone in all this. I’m heading to church soon where I know I’ll be prayed over and one of my brother Tom’s new staff at his group home is a Christian and will be taking him in my absence (another answer to prayer). It’s absolute comfort and peace that passes understanding knowing I can lean on the one who knit me together (Psalm 139), whose fighting for me (Ex 14:14)  and who is directing my steps (Prov 3:5-6). Even as I face the uncertainty of it all, I know he’s in it. To God be the glory. 

When I meet with Dr. Ouzounian in the morning, I will only proceed if I have peace about it—I have no idea what kind of valve I’ll get because I focused on the Ross, but trusting God to make that clear as well. I’m not feeling the need to get another opinion because if it looks as if  I need to move in a new direction, I will return to Dr. Ashe in Kitchener, the first Toss surgeon in Canada I discovered 6 months ago. 

I almost don’t know how to put into words what reading your comments means to me. ❤️❤️❤️Your empathy moves me tremendously and it strengthens me, it really does. There are mama bears among you seeming poised to fight for a valve sister, and what a gift that is! 🥰🙌🏻
and brothers like Darrell and Allen and others who are protective and encouraging. God bless you! ❤️‍🩹🙏🏻🙌🏻 This is a family, it truly is, and for this single independent cat lady 😻, I couldn’t have imagined how much I would need you and would learn from you and will continue to do so in the days to come. I may never meet any of you (though I hope that’s not true), but through this site (thank you Adam!) you have become such a big part of my life! It’s a unique fellowship that is as important as the surgery itself, I believe. 
God bless Barbara and Dan as they face tmrw too—may his peace quench any anxiety for you or your loved ones. I look forward to “seeing” you all on the other side! Bless you friends! 🙏🏻🥰🙌🏻❤️

A wrench has just been thrown into everything. I just got an email from my surgeon who no longer thinks I should have the Ross procedure because of my liver enzymes. I’m in shock and reeling from this news because if that’s the case I could have had this In Feb with the first guy, plus she said 2 months ago that if I was her sister she’d recommend the Ross for me out of all the options, thinking it would give me the best life expectancy and outcomes. I don’t know what to do but I don’t feel ready any longer to have this on Monday. 😰 I’m just going to have a big cry, sleep on it and start over in the morning. Please pray for God’s wisdom in this…I want what’s best even if it means a different procedure. 🙏🏻❤️‍🩹😰Was not expecting this at all, but have to trust God.

Pre-op day today…went with my best friend from high school who made sure I didn’t lose all my papers and antiseptic soap and other bits and bobs….good thing because I found it challenging  to remember and focus….I think because it’s all so new and feels so real now. 

bloodwork, ECG, chest X-ray, met with nurse for questions and instructions, pharmacist and anesthesiologist, swab for a type of bacteria

All tests were in normal range except ALT and AST (liver enzymes)—both quite high, and iron saturation was in low range. 😬

Sometimes I think I can know too much and reading those results was one of those times. 😰

Date change #6….now June 10, 2 days earlier so I’m glad about that. Now that I have 2 fewer days to prepare, I’m paring down my to-do list! I suppose power washing my deck can wait. 🥴

Warning: long journal entry ahead…

I just want to encourage any of you who may be feeling anxious or afraid, or if your mood plummets some days, and you don’t want to get out of bed, then maybe on another day you feel hopeful again.
 This journey, for me anyway, has been as much mental/emotional as it has been physical. Yes, I am prone to depression anyway, but these last weeks and months have been a personal test like no other for me, and I’m sure will continue to be.
 There are many moments when I feel excited about the good things in my life—family, faith, friends, and the projects I want to invest in during this retirement phase of my life—doing some writing, getting to Italy eventually, doing the Camino de Santiago pilgrimage, opening my cafe I’ve dreamed about, getting back to doing pottery,  and working on behalf of people with special needs and mental illness  like my brothers, etc etc etc.

But these are also interspersed with some real dark moments when I can fear the worst possible thing happening, whether it’s the surgery itself, or the recovery afterward, cardiac depression taking me down, or not being in good enough shape for recovery (because in fact, I’ve put back some of the weight that I initially took off—trying to lose weight in a stressful situation when it has been one of your coping mechanisms for stress is not very effective). 
My energy has been low because I’m symptomatic, but I’ve also been depressed, and it has been really hard to muster the strength to go for walks many days. Depression for me doesn’t necessarily manifest as sadness—it can be more just an inability to do anything that requires much effort, and it can look look like laziness. Depressed people aren’t lazy; we may look like it, but we’re actually trying really hard to live, to do what comes more naturally and easily to those who aren’t; and many days we may know too the feeling of that weight lifting and that freedom to live, and do and get things done and take care of ourselves and those entrusted to us as well. 
I have a very strong faith in God, and know that he’s got this, and I honestly could not imagine facing this or any of life’s challenges without him. I know that’s true for many of you in this community too. Mental health is not something I’ve ever been comfortable talking about as it pertains to me, likely because of social stigma, but also because it means being vulnerable and sharing what could be perceived as weakness.

 But nothing in my life has ever made me feel more vulnerable than facing open heart surgery; it has put its finger on  every fragility, every tender area, every Achilles heel, even every bad habit,  that has been hitherto heavily defended and guarded. And I feel exposed because of it. I didn’t realize how much I thought I could control in life, mine and others…until now. I didn’t realize how much I would need other people to help me or how hard it would be to ask for that help…until now. I didn’t realize that I’m not invincible (seriously! ) and that one day I might actually have a serious health issue I would need to address…until now. 

But I am experiencing through all of this, something else I’m not sure I would have without open heart surgery, and it has been as invigorating and wondrous as it has been scary. I’m not even sure what to call “it”, but it feels hopeful and transcendent, fumbling yet strengthening, beautiful and awkward all at the same time. It beckons me forward and assures me that all is well, even if sometimes it doesn’t feel like it. 

Not what I would typically write in THIS journal, but definitely what I would in my private journal. And not what I would typically put out there for all to see…but this is a very personal journey and if anyone else can relate, then I’m happy to share if it can help you to know you’re not alone as you sort through your own beautiful mess too. ❤️‍🩹🙏🏻

Hi Adam! I just sent John W  a message but most of it was cut off. It says “Read more” for the rest but it’s not a hyperlink to lead you there. I’ve noticed this happen before. Maybe the algorithm is trying to tell me my messages are too long? 😜

When I contacted my surgeon’s office to see if I could find out my pre-op date, I was told my surgery would be postponed another week to June 11. If I hadn’t called, I’m not sure when they would have told me. Hard to plan for friends to lend a hand when dates keep changing. Even still, I have to stay positive…it’s just nerves.