My number was finally called!

[bizinsider]

Being a surgeon myself caused me to be less passive than the average patient. I think the patient or their representatives sometimes need to be squeaky wheels in a nice way.

Unfortunately for them, we will be squeaky wheels (in a nice way) if we need to be. My wife will be there as my advocate and unless I'm an invalid, I will be my own advocate. I to to a high volume dentist in San Diego. When I first started seeing him 20 years ago I was put off by the way he did things: The assistants got you ready, he swooped in for fix, leave without saying a word, and his assistants finished. (This was with crowns, too.) Over the years I came to appreciate his talent, and over time of course we had an exceptional connection. Interesting to hear a surgeon's view.

 

[bizinsider]

Thank you @Paleowoman. I just want to know why because, I know, with the biological valve, likely there will be a next time, especially since I plan to make it past 80. Anyway, I have written twice and called him once. I am stubborn and will prevail because, I and whoever touches me next time needs to know.

I believe too that surgeons are required to take all 3 levels of How not to communicate as part of their residency

PS I think I was offered release on day 4 because I was squeaking a lot and obviously recovering ok.

Whoa - Day 4?! Wow. I'm being told to expect to be in the hospital 5-7 days, and expect release to fly home Day 10, barring complications. Here's something: On another forum I connect with someone else from San Diego who went to CC and (via a good friend of his, who had roomed with his surgeon in college) saw another one of the top folks there. Even though there was a personal connection, he said the guy was somewhat aloof. His view: To do that job, they're all out on the spectrum somewhere, which for something as precise as that - is a good thing. I was telling my wife that these guys are like carpenters, or people who make models of ships: They work with their hands doing the kind of stuff that would drive me nuts. And then think about the carpenters, woodworkers, craftspeople you have met you have met - many are quiet, focused, not necessarily the biggest personalities. Maybe general surgeons are different, AKA Hawkeye and Trapper John from M.A.S.H. But these guys (and I'd add orthopedics to the mix) are working with their hands in a different kind of way. There was a brain surgeon in San Francisco who was legendary. He apparently had ZERO personality but was known as the guy you would want to go to if something really bad happened. So maybe brain surgeons, also? (I hope to never find out.)

 

[bizinsider]

I look forward to your updates and wish you the very best for the days ahead. Keep us posted!

If you don't get updates, that's a bad sign. I write for a living so story telling is part of who I am. (Working with my hands - hey, when I was a kid who made plastic models I was the one who got glue ... everywhere but where it was supposed to go.)

 

[KatherineA]

@bizinsider thank you so much for your input! In answer to your questions -

I was assigned to Dr Svensson because my valve deteriorated rapidly in 2019. I had been completely asymptomatic. In 2019 early, I kind of recognized symptoms but dismissed them for other reasons especially through spring and summer.

For example, I stopped working my gardens much after July blaming my tiredness and breathlessness on our drought nothing was growing anyway, and the heat was ridiculous. I Stopped teaching yoga, just didn’t feel right, students had dropped off. But I did not fully admit to myself or anyone the extent of my difficulties in demonstrating poses and still maintaining a steady voice and breath. Since I could still do everything I wanted for my own practice I dismissed the breath issues (dumb) until later fall when I had some brief, but scary fainting episodes, more breathless, no uphill hiking on a Western vacation. One could say I wasn’t listening to my body. On the other hand, I was more or less intuitively eliminating activities that could have caused more harm faster. I’m still debating this with myself.

At my regular check up in Cleveland in December, I was advised by my cardiologist Dr Jellis ((whom I LOVE) that the valve was in such poor shape, I should maybe consider staying for immediate surgery rather than returning home. Shocker! I have animals, I heat with wood primarily, and my spouse was not with me. we agreed I would go home But would take the next available appointment with the surgeon she recommended- Dr Svensson. I looked up his videos, bios in her office and said ok.

He was out of the country and otherwise not available to talk at all until Jan. So I took the January 7 surgery date and agreed to meet him the week before and complete preOp tests from Jan 2-Jan 6.

Not meeting my surgeon prior to surgery has always been a thing with me. But I could tell I was failing fast based on my breath or lack thereof as Dec continued. And, a similar situation had happened to me with my eye surgeon for a macular hole. I didn’t know him from Adam but one eye was nearly blind suddenly from the tear. We ended up having a good relationship. I hoped, Svensson would be similar. In any case, based on my rresearch I knew he was likely the best surgeon technically probably anywhere.

I get he’s busy. I don’t need warm fuzzy, I do need information that is pertinent to my future health. My issue is - I don’t get the refusal so far to updat the report or notes to explain why his change of mind. Did I crash in surgery? I am small framed. was It suddenly very obvious that he needed more room to work? One X-ray Report mentioned a “torturous artery” is that why? I’m all tangled up in there?

I think I need to know for my knowledge and to ease the way for a future surgeon to replace the valve, do a future TAVR, or if I have some emergency where some future doctor or surgeon needs to worry about getting into my heart they know why.

I never found this or a similar website until the week I joined. I have no idea why. It is bizarre. But then, I really hadn’t tried to find out much about surgery, options, etc after the first year I was diagnosed (2015) I gave myself the arbitrary goal of no surgery until 2022. No medical reason, just my guess. Instead of learning about surgery or possible complications, I only decided I wanted a biological valve and that was it. boom. ignorance in my case really was bliss. I presumed I would be fine. It would stink for a few weeks, maybe a month or three. But I’d be ok.

how has my recovery been smooth so far? I think because as noted above I didn’t have many details in my head about complications. Second, I vowed to do all I could to understand and to learn to listen to my body. So no matter what happened, I would understand myself and what I needed I made plans to go part time at work the last of 2015 and to retire fully in early 2016 This was truly a financial hardship Crazy in fact. But, necessary I think to have had such a successful surgery

2015 I started to grow what I eat in earnest and if I eat meat, I know the source and it’s local. I signed up for yoga teacher training and completed 500 hours by 2018 fall. Although I had a steady practice the training was invaluable to me as far as listening to my heart, getting stronger and healthier. I studied all 8 limbs of yoga and tried to practice all the facets every day, breath, meditation, living without harming (ahimsa) not just the poses. I remind myself it’s a practice often as I’m human and impatient often. I made sure my family knew to ask fro the Integrative Medical Personnel and to get me Reike as soon as possible after surgery and or meditation assistance. I got help from that unit twice. They were an invaluable part of my recovery.


.

 

[bizinsider]

@bizinsider thank you so much for your input! In answer to your questions -

I was assigned to Dr Svensson because my valve deteriorated rapidly in 2019. I had been completely asymptomatic. In 2019 early, I kind of recognized symptoms but dismissed them for other reasons especially through spring and summer.

For example, I stopped working my gardens much after July blaming my tiredness and breathlessness on our drought nothing was growing anyway, and the heat was ridiculous. I Stopped teaching yoga, just didn’t feel right, students had dropped off. But I did not fully admit to myself or anyone the extent of my difficulties in demonstrating poses and still maintaining a steady voice and breath. Since I could still do everything I wanted for my own practice I dismissed the breath issues (dumb) until later fall when I had some brief, but scary fainting episodes, more breathless, no uphill hiking on a Western vacation. One could say I wasn’t listening to my body. On the other hand, I was more or less intuitively eliminating activities that could have caused more harm faster. I’m still debating this with myself.

At my regular check up in Cleveland in December, I was advised by my cardiologist Dr Jellis ((whom I LOVE) that the valve was in such poor shape, I should maybe consider staying for immediate surgery rather than returning home. Shocker! I have animals, I heat with wood primarily, and my spouse was not with me. we agreed I would go home But would take the next available appointment with the surgeon she recommended- Dr Svensson. I looked up his videos, bios in her office and said ok.

He was out of the country and otherwise not available to talk at all until Jan. So I took the January 7 surgery date and agreed to meet him the week before and complete preOp tests from Jan 2-Jan 6.

Not meeting my surgeon prior to surgery has always been a thing with me. But I could tell I was failing fast based on my breath or lack thereof as Dec continued. And, a similar situation had happened to me with my eye surgeon for a macular hole. I didn’t know him from Adam but one eye was nearly blind suddenly from the tear. We ended up having a good relationship. I hoped, Svensson would be similar. In any case, based on my rresearch I knew he was likely the best surgeon technically probably anywhere.

I get he’s busy. I don’t need warm fuzzy, I do need information that is pertinent to my future health. My issue is - I don’t get the refusal so far to updat the report or notes to explain why his change of mind. Did I crash in surgery? I am small framed. was It suddenly very obvious that he needed more room to work? One X-ray Report mentioned a “torturous artery” is that why? I’m all tangled up in there?

I think I need to know for my knowledge and to ease the way for a future surgeon to replace the valve, do a future TAVR, or if I have some emergency where some future doctor or surgeon needs to worry about getting into my heart they know why.

I never found this or a similar website until the week I joined. I have no idea why. It is bizarre. But then, I really hadn’t tried to find out much about surgery, options, etc after the first year I was diagnosed (2015) I gave myself the arbitrary goal of no surgery until 2022. No medical reason, just my guess. Instead of learning about surgery or possible complications, I only decided I wanted a biological valve and that was it. boom. ignorance in my case really was bliss. I presumed I would be fine. It would stink for a few weeks, maybe a month or three. But I’d be ok.

how has my recovery been smooth so far? I think because as noted above I didn’t have many details in my head about complications. Second, I vowed to do all I could to understand and to learn to listen to my body. So no matter what happened, I would understand myself and what I needed I made plans to go part time at work the last of 2015 and to retire fully in early 2016 This was truly a financial hardship Crazy in fact. But, necessary I think to have had such a successful surgery

2015 I started to grow what I eat in earnest and if I eat meat, I know the source and it’s local. I signed up for yoga teacher training and completed 500 hours by 2018 fall. Although I had a steady practice the training was invaluable to me as far as listening to my heart, getting stronger and healthier. I studied all 8 limbs of yoga and tried to practice all the facets every day, breath, meditation, living without harming (ahimsa) not just the poses. I remind myself it’s a practice often as I’m human and impatient often. I made sure my family knew to ask fro the Integrative Medical Personnel and to get me Reike as soon as possible after surgery and or meditation assistance. I got help from that unit twice. They were an invaluable part of my recovery.


.

WOW WOW WOW. What a story! My wife had wondered what would happen if we went there and they said I should have it THEN. I assured her that doesn't happen. Then along you come!

With me, he just said, "soon." I consider myself asymptomatic and would like to keep it that way until surgery. Curious - now that you are a month out, how is your sternum pain?

 

[KatherineA]

Sternum pain The morning after surgery I refused the fentanyl. It was making me nauseous, paranoid and hallucinatory. Even then, pain was 8 maybe. Managed if I moved carefully. I only swore when nurses pulled me up the bed to be more comfortable. The dragging was a not fun the second day.
Home on 15th. 500 MG Tylenol about 3 times a day

every week it goes down rather exponentially

now week 4 nearly 5 it is pretty much what I would call 0 to 3. Some days I have a dull ache mostly along the collar bones. Other days, it is the top 1/3 of the sternum and that increases as the day goes on. I’ve had 2??? Days with zero Tylenol. Usually, I take 2 after dinner for ease in going to sleep.

Pain can be increased if I’m not careful. I forget and grab a heavy piece of firewood, a large bag of cat food or litter or my fat cat. Oops.

Or I stretch too much with Shoulder releases or spine movements. Why am I doing these? Because I’m not used to sitting so much and they release my lower back. I started week 4 about every 3rd day’s day because my sacrum hurt more than my chest. I stretch at what I think is 1/2 former capacity. So long as I stay cool, nothing hurts more and my back gets better too

since week 4 I see and feel daily improvement.

But, I’ve been told I have a high pain threshold

I had an accident in yoga once where I pretty much fell full weight of my left knee on my left hand. I went to the urgent care when the swelling did not go away on the 3rd day. The doctor looked at the X-ray, looked at me and said, you don’t feel pain from the arthritis in that hand normally. I said what arthritis. He said continue with ice packs and nothing was broken, and explained it would take a bit for the swelling to go away - arthritis didn’t like being smushed

 

[bizinsider]

Kathryn, that's very helpful. How was the breathing tube...the removal of the chest tubes? That all might scare me more than the surgery!

 

[pellicle]

That all might scare me more than the surgery!

put all that out of your mind, don't even think about it. Its irrelevant and you can't change it. The way you are doing it is the path to anxiety

a wise man would see that nobody dies from the tubes, but people (rarely) die from the surgery and or complications. So while you may consider this advice "heartless" its not.

Focus on what you can change and ignore the rest.

find a path to calm and do not let your fears and imaginations of how it will be control or guide you

For in reality most of us hardly remember the pipes and tubes and wires unless we choose to focus on that, 10 years will pass and there are more durable issues that emerge.

Best Wishes

 

[bizinsider]

put all that out of your mind, don't even think about it. Its irrelevant and you can't change it. The way you are doing it is the path to anxiety

View attachment 887302

a wise man would see that nobody dies from the tubes, but people (rarely) die from the surgery and or complications. So while you may consider this advice "heartless" its not.

Focus on what you can change and ignore the rest.

View attachment 887303

find a path to calm and do not let your fears and imaginations of how it will be control or guide you

View attachment 887304

For in reality most of us hardly remember the pipes and tubes and wires unless we choose to focus on that, 10 years will pass and there are more durable issues that emerge.

Best Wishes

Pellicle, thanks! Wise words. BTW, I should have rephrased that to say, "The tubes are what scare me; the surgery doesn't." But either way, your comments on the tubes are now etched in my brain. ;-)

 

[daVinci]

All the best Herb, it'll all add up to a life well-experienced. And looking forward to some top-notch storytelling!

Being a surgeon myself caused me to be less passive than the average patient. I think the patient or their representatives sometimes need to be squeaky wheels in a nice way.

What type of surgeon are you may I ask vitdoc? I very much relate to this. I've become a very (hopefully not overly) active patient since I began practice. On the one hand you can be that nice squeaky wheel and on the other, well... there's the excess worry and detailed analysis of things!

 

[KatherineA]

For me the tubes were nothing, even the breathing tube. I had great fears of that and I don’t even remember it’s removal.

I second the advice above. Some things are worth worry. But a LOT is not and worry won’t change a thing. Kind of why I really chose not to know too much beforehand.

 

[pellicle]

Pellicle, thanks!

welcome, what I lack in bedside manner I make up for in willingness to actually help

 

[bizinsider]

Pellicle, you are the voice of reality/reason on these boards and sanity in a sea of fear.

DaVinci, when my brain says, "Go," I plan to report.

Katherine, I'm very glad to hear that. And you're right about worry. What, me worry? I'm weirdly excited. We have some relatives in their mid-to-late 90s. He's a former minister; she is just amazing; both are beyond inspirational. They live in Rochester, MN, and their healthcare is via Mayo (which would have been our second choice, but time for visiting ran out.) She said that whenever she has something medically that might be uncomfortable she always tells herself that this time tomorrow it will be over. Well, this time a month from now I'll be in the step-down unit, tubes will be out and I'll hopefully be posting some reports here! Just received the CC surgical packet today. They wasted no time. That should bring back some memories for you! ;-)

 

[KatherineA]

Oh my goodness. Yes it does.

I sincerely believe that the Integrative Medicine team and their Reiki treatments were instrumental in me getting up and out. I too was told 5-8 days. Have their name and number handy for your family to call soon. The info is in the packet.

 

[bizinsider]

Thanks for that advice. Will definitely check it out. Also, my cardiologist run the integrative program at Scripps in San Diego - so it will be interesting to see what advise he offers once I'm back.

 

[newarrior]

Good luck.

Hope it's not in bad taste to ask this question, but I wonder if fixing aortic valve at earlier stage would prevent damage to other valves? I know there was a study that indicated that moderate stenosis is just about as serious as severe stenosis.

I've never heard that. I'm moderate and I'm having a lot of scary symptoms that could indicate valve replacement I did my last Echo and November I did an MRI of my heart in February and thinking about doing an echo again this week even though it's just been 5 months since I did the last one. What study says that moderate is bad as severe?