Bonbet
Well-known member
I am 3 1/2 weeks post AVR for severe aortic stenosis of a bicuspid valve. I have a 25mm OnX mech valve.
It has taken a bit of time for m to be able to talk about what happened because I am disappointed. I know many of the wonderful people on this forum are positive thinkers, and I appreciate that. I am usually pretty starkly realistic so please be forewarned that I am not editing for positive spin.
May 22, tested for PCN allergies, which I was happy they were doing but when I got in there they asked for my allergy history. I had offered to send those records before hand, and the surgeon’s office said they wouldn’t need them because they would just test me in any case. Once at the hospital I did not have access to the records, and did not remember all the specifics of my allergic reactions so they almost didn’t test me. So that was a couple of hours of stress that could have been avoided.
May 23, The angiogram. I’ve never had one, no diabetes, good blood pressure, no cholesterol issues etc. The “Dr” (probably a fellow?) sees me in the prep area and is eyeing my radial artery.
I say, are you going to go through the radial.
He says, probably not because you have stenosis
I say, why is it contraindicated if I have aortic stenosis?
He says, because we have to use nitroglycerin when we use the radial and your heart won’t get enough blood flow with nitro - but we’ll see what the big guy says (the supervising doc.)
In the procedure he starts prepping my radial artery. The big guy defers to the doc doing the procedure.
I ask, I thought you couldn’t use the radial?
He says, we are going to try it without nitro.
This is a disaster, painful and he blows out my radial artery and then fails to put enough pressure on it long enough so that when in recovery when they ask how the “site” feels, I say the femoral site is fine but boy does my Left arm hurt. They look, my arm from hand to elbow is swollen tight and many different colors.
They finally get the big guy up to look at the mess they made and he said, you have pulses. Then he asks when the surgery is. I tell him tomorrow and he says to me “Oh well then your arm is the least of your worries.” It still hurts.
I was supposed to see the surgeon after the angio, but he cancelled and sent the anesthesiologist. Which was sort of good because I have C spine issues, and severe nausea and dry heaves post anesthesia and I wanted him to know.
We talked positioning. I told him about dry heaving bile post anesthesia and my fear of “waking” during the procedure. Some good news; he was responsive about positioning and said they wouldn’t put me out until they had my neck in a comfy position. He said there was a “strip” they can put on the forehead to monitor brain activity and it wasn’t foolproof but they would use that.
And they did a fantastic job of making sure I was never nauseated or pukey. They gave me prophylactic meds and kept me medicated for nausea throughout recovery and ICU.
Then he asked if I would talk to a young man about being in a research cohort for a study he was participating in. I think that it is a bad idea to ask these questions at the patients most vulnerable point (less than 24 hours to surgery.) The study involved giving saline twice during the surgery and repositioning me. I said I would think about it. The next day, while in the room on the gurney minutes from being taken to the OR, he resurfaced. I said no thanks, and hoped that wouldn’t piss off the anesthesiologist too much.
Of course woke in ICU. But not very awake. I could feel my husband’s warm hand in mine and thanked God for that. Yes the dry mouth is misery but it is short lived. I was barely conscious of the Endotracheal tube removal. I could feel the pressure balloons on my legs. I was in extreme pain, back, shoulders, and neck. It was relentless. I’ve birthed two babies- without any pain meds. This was bad.
Note to those in waiting room: make sure you know your hospital’s pain protocols and determine ahead of time if that will work for you. I was a nurse 28 years ago and Patient Controlled Pain administration was standard. I assumed that would be how they would manage my pain. I was wrong. And I was so out of it, I never demanded they provide it after the fact. So I had a lot of pain - again, back neck and shoulders- that was not necessary. They gave fentanyl IV but on a limited basis and only in ICU, which they supplemented with oxycodone 5 or 10 mg every 4 hours. And Tylenol. It doesn’t seem like back pain could be so bad, but I just wanted to crawl out of my skin. They would medicate me and I’d fitfully sleep then wake up and think it had to be morning or next shift at least - and it would have been one hour or so. And the painful wait would start again. Problem solving when I am in that kind of state is not happening. I didn’t really put it all together until I got home. So, nail down your pain treatment plan beforehand.
BTW, the arm with the radial artery blow-out was still profoundly painful on top of everything else.
Next day they moved me to PICU. The nursing care was good, they were staffed well and the nurses were very helpful. They got me up for short walks, sitting in the chair, the second day after surgery. I have some issues with the hospital’s clean vs sterile procedures. A lot of techs, and nurses use non-sterile gloves for everything in lieu of washing hands. Those gloves are to protect them, not the patient. I had issues with exposed incisions (chest tubes removal etc) as a “clean” procedure. The nurse practitioner wore non sterile gloves, and had long hair and it was hanging down over the open wounds. I was about to say something when the nurse helping her took off his non-sterile gloves and started to touch the area with the hands that he didn’t even wash or sanitize when he came into the room. I said whoa. They were pretty defensive saying they weren’t going to touch the open wounds. “But I’ll wash my hands if it makes you feel better!”
Note to Waiting roomers: Speak up, advocate for yourself. All the literature the hospital gave us emphasized that it is our right to do this and insist on hand washing.
Also, they didn’t suture the chest tube holes saying that they heal from the inside out. I am skeptical of this and would have preferred the gaping holes had been sutured.
Now on to matters of greater significance. I have posted over time about researching cardios and surgeons and after many years of checking things out, selected a cardio and a surgeon in 2015. I still had some time before surgery but we had our consult and I was confident in my surgeon. So much so, that when they both recommended a mechanical valve, I was stunned, but thought they had good reasoning behind the choice. My husband and I talked for about 45 minutes with the surgeon and he answered every question, including, was I a candidate for a partial sternotomy. He said yes, as long as my aorta looked good and my angio was clean. Remember I did not get to talk to the surgeon after the angio. I only saw him briefly about half hour before the surgery with my entire family. By that time I was a nervous wreck.
My angio was clean, and they knew with almost 100% certainty that my aorta needed no work.
So I was devastated to wake up to a full sternotomy. When I expressed my profound disappointment to the surgeon he said: “Well that was in 2015: full sternotomies are what I do: It’s a better recovery: don’t worry- cosmetically you won’t even notice the scar.” (What happened to the knowledgeable, communicative surgeon I consulted with?! Who is this guy?) I didn’t need or want a full sternotomy because I am extremely physically active, yoga, gardening, etc etc, I don’t give a rip what the scar looks like. And a partial IS an easier recovery!
So another question we asked the surgeon during our 2015 interview and immediately before surgery was “Who does the surgery?” He assured us both times he did it ALL from open to close.
Well, when he came out of surgery to debrief my family - he told them I was just being closed.
So who knows who did what, but he obviously did not do it ALL.
I did ask for, and they did provide, a pic of the valve in situ. What a mess. Turns out I have a unique bicuspid that is actually only two cusps, no raphe. It was stenosed with Calcium deposits along the whole length with one tiny pinhole at the very edge. No wonder I had an “eccentric jet” which always challenged the echo reading because they could not get a straight bead on it.
But, there’s more. I had a normal sinus rhythm going into surgery with HR of about 53 to 60. I came out of surgery with a Left Bundle Branch Block (and first degree AV block) which was apparent on the immediate post surgical EKG. They said “sometimes it happens that we damage the conduction pathways, but give it time it could be due to swelling.” Four days later the EKG showed it was worse. Surgeon was dismissive, “it’ll be fine.” I demanded to see my cardio who ordered an EP MD consult (electrophysiology.) They put me on a “Body Guardian” which is a 24/7 monitor for 30 days.
The little monitor which I wear over my L chest communicates with a phone that sends the data to the techs monitoring the monitors. The complication of a conduction block occurs in about 5% of cases.
The Electro Physiologists also decided to rule out a pacemaker for the trip home by giving me a stress test on a treadmill. YES, 6 days post-op they put me on a treadmill (luckily I brought my running shoes.)
I lasted 5 mins and 10 secs before I was lightheaded and pulse was pounding and HR 121.
Apparently almost all beats were conducted so they ruled out a pacemaker for the time being.
(All this on low dose Metoprolol.) The jury is still out on how the block will proceed and what the impact will be on me in future years, or how it will effect my capacity to exercise.
Flying back to Oregon was not that bad. I was uncomfortable sitting anyway, so it was more of the same. They gave me meds for nausea but I didn’t every feel sick.
Before leaving for the hospital, I bought a foam wedge to sleep on but after the second sleepless painful night my husband got me a recliner. That was bliss for a little more than a week and then my cardiac rehab tech said to get into bed because the recliner effects posture and my sternum would heal tight if I was in it too long. Luckily,
my own bed was comfortable by then, and I was strong enough to get in and out without using my arms. Surgery was 5/24 and I was home on 6/1 and I stopped narcotic pain meds on 6/3.
They didn’t get along with me.
I spent years informing myself about my condition, the surgery, the potential MD’s and facilities.
I went in feeling really good about my choices. Now I question how I weighted those choices. Some things, like fear of the actual surgery, or potential infections, the vent, turned out to be non-issues. Things I overlooked like the veracity of the surgeon, utterly unknown Docs performing procedures, complications I did not anticipate- turned out to be the real issues. I will say one thing : I should have, could have, gone in sooner - even though I was asymptomatic by the cardio’s standards.
The best thing about this story was my husband and my grown son and daughter and my best friend. What a loving and supportive team - I felt so reassured by their presence and the nurses were very accommodating of all of them.
The hospital tries to make the diet healthy, but the food is terrible and I had no appetite anyway. My son, who teaches cheffing made a batch of home made chicken soup, rice pudding, and granola (with yogurt) in the tiny kitchen in the hotel where they all were camped. That is all I ate the entire stay.
Thanks for listening. I hope those of you in the waiting room will glean some tips from this saga, and may you all have good outcomes and minimal pain!
Bonbet
It has taken a bit of time for m to be able to talk about what happened because I am disappointed. I know many of the wonderful people on this forum are positive thinkers, and I appreciate that. I am usually pretty starkly realistic so please be forewarned that I am not editing for positive spin.
May 22, tested for PCN allergies, which I was happy they were doing but when I got in there they asked for my allergy history. I had offered to send those records before hand, and the surgeon’s office said they wouldn’t need them because they would just test me in any case. Once at the hospital I did not have access to the records, and did not remember all the specifics of my allergic reactions so they almost didn’t test me. So that was a couple of hours of stress that could have been avoided.
May 23, The angiogram. I’ve never had one, no diabetes, good blood pressure, no cholesterol issues etc. The “Dr” (probably a fellow?) sees me in the prep area and is eyeing my radial artery.
I say, are you going to go through the radial.
He says, probably not because you have stenosis
I say, why is it contraindicated if I have aortic stenosis?
He says, because we have to use nitroglycerin when we use the radial and your heart won’t get enough blood flow with nitro - but we’ll see what the big guy says (the supervising doc.)
In the procedure he starts prepping my radial artery. The big guy defers to the doc doing the procedure.
I ask, I thought you couldn’t use the radial?
He says, we are going to try it without nitro.
This is a disaster, painful and he blows out my radial artery and then fails to put enough pressure on it long enough so that when in recovery when they ask how the “site” feels, I say the femoral site is fine but boy does my Left arm hurt. They look, my arm from hand to elbow is swollen tight and many different colors.
They finally get the big guy up to look at the mess they made and he said, you have pulses. Then he asks when the surgery is. I tell him tomorrow and he says to me “Oh well then your arm is the least of your worries.” It still hurts.
I was supposed to see the surgeon after the angio, but he cancelled and sent the anesthesiologist. Which was sort of good because I have C spine issues, and severe nausea and dry heaves post anesthesia and I wanted him to know.
We talked positioning. I told him about dry heaving bile post anesthesia and my fear of “waking” during the procedure. Some good news; he was responsive about positioning and said they wouldn’t put me out until they had my neck in a comfy position. He said there was a “strip” they can put on the forehead to monitor brain activity and it wasn’t foolproof but they would use that.
And they did a fantastic job of making sure I was never nauseated or pukey. They gave me prophylactic meds and kept me medicated for nausea throughout recovery and ICU.
Then he asked if I would talk to a young man about being in a research cohort for a study he was participating in. I think that it is a bad idea to ask these questions at the patients most vulnerable point (less than 24 hours to surgery.) The study involved giving saline twice during the surgery and repositioning me. I said I would think about it. The next day, while in the room on the gurney minutes from being taken to the OR, he resurfaced. I said no thanks, and hoped that wouldn’t piss off the anesthesiologist too much.
Of course woke in ICU. But not very awake. I could feel my husband’s warm hand in mine and thanked God for that. Yes the dry mouth is misery but it is short lived. I was barely conscious of the Endotracheal tube removal. I could feel the pressure balloons on my legs. I was in extreme pain, back, shoulders, and neck. It was relentless. I’ve birthed two babies- without any pain meds. This was bad.
Note to those in waiting room: make sure you know your hospital’s pain protocols and determine ahead of time if that will work for you. I was a nurse 28 years ago and Patient Controlled Pain administration was standard. I assumed that would be how they would manage my pain. I was wrong. And I was so out of it, I never demanded they provide it after the fact. So I had a lot of pain - again, back neck and shoulders- that was not necessary. They gave fentanyl IV but on a limited basis and only in ICU, which they supplemented with oxycodone 5 or 10 mg every 4 hours. And Tylenol. It doesn’t seem like back pain could be so bad, but I just wanted to crawl out of my skin. They would medicate me and I’d fitfully sleep then wake up and think it had to be morning or next shift at least - and it would have been one hour or so. And the painful wait would start again. Problem solving when I am in that kind of state is not happening. I didn’t really put it all together until I got home. So, nail down your pain treatment plan beforehand.
BTW, the arm with the radial artery blow-out was still profoundly painful on top of everything else.
Next day they moved me to PICU. The nursing care was good, they were staffed well and the nurses were very helpful. They got me up for short walks, sitting in the chair, the second day after surgery. I have some issues with the hospital’s clean vs sterile procedures. A lot of techs, and nurses use non-sterile gloves for everything in lieu of washing hands. Those gloves are to protect them, not the patient. I had issues with exposed incisions (chest tubes removal etc) as a “clean” procedure. The nurse practitioner wore non sterile gloves, and had long hair and it was hanging down over the open wounds. I was about to say something when the nurse helping her took off his non-sterile gloves and started to touch the area with the hands that he didn’t even wash or sanitize when he came into the room. I said whoa. They were pretty defensive saying they weren’t going to touch the open wounds. “But I’ll wash my hands if it makes you feel better!”
Note to Waiting roomers: Speak up, advocate for yourself. All the literature the hospital gave us emphasized that it is our right to do this and insist on hand washing.
Also, they didn’t suture the chest tube holes saying that they heal from the inside out. I am skeptical of this and would have preferred the gaping holes had been sutured.
Now on to matters of greater significance. I have posted over time about researching cardios and surgeons and after many years of checking things out, selected a cardio and a surgeon in 2015. I still had some time before surgery but we had our consult and I was confident in my surgeon. So much so, that when they both recommended a mechanical valve, I was stunned, but thought they had good reasoning behind the choice. My husband and I talked for about 45 minutes with the surgeon and he answered every question, including, was I a candidate for a partial sternotomy. He said yes, as long as my aorta looked good and my angio was clean. Remember I did not get to talk to the surgeon after the angio. I only saw him briefly about half hour before the surgery with my entire family. By that time I was a nervous wreck.
My angio was clean, and they knew with almost 100% certainty that my aorta needed no work.
So I was devastated to wake up to a full sternotomy. When I expressed my profound disappointment to the surgeon he said: “Well that was in 2015: full sternotomies are what I do: It’s a better recovery: don’t worry- cosmetically you won’t even notice the scar.” (What happened to the knowledgeable, communicative surgeon I consulted with?! Who is this guy?) I didn’t need or want a full sternotomy because I am extremely physically active, yoga, gardening, etc etc, I don’t give a rip what the scar looks like. And a partial IS an easier recovery!
So another question we asked the surgeon during our 2015 interview and immediately before surgery was “Who does the surgery?” He assured us both times he did it ALL from open to close.
Well, when he came out of surgery to debrief my family - he told them I was just being closed.
So who knows who did what, but he obviously did not do it ALL.
I did ask for, and they did provide, a pic of the valve in situ. What a mess. Turns out I have a unique bicuspid that is actually only two cusps, no raphe. It was stenosed with Calcium deposits along the whole length with one tiny pinhole at the very edge. No wonder I had an “eccentric jet” which always challenged the echo reading because they could not get a straight bead on it.
But, there’s more. I had a normal sinus rhythm going into surgery with HR of about 53 to 60. I came out of surgery with a Left Bundle Branch Block (and first degree AV block) which was apparent on the immediate post surgical EKG. They said “sometimes it happens that we damage the conduction pathways, but give it time it could be due to swelling.” Four days later the EKG showed it was worse. Surgeon was dismissive, “it’ll be fine.” I demanded to see my cardio who ordered an EP MD consult (electrophysiology.) They put me on a “Body Guardian” which is a 24/7 monitor for 30 days.
The little monitor which I wear over my L chest communicates with a phone that sends the data to the techs monitoring the monitors. The complication of a conduction block occurs in about 5% of cases.
The Electro Physiologists also decided to rule out a pacemaker for the trip home by giving me a stress test on a treadmill. YES, 6 days post-op they put me on a treadmill (luckily I brought my running shoes.)
I lasted 5 mins and 10 secs before I was lightheaded and pulse was pounding and HR 121.
Apparently almost all beats were conducted so they ruled out a pacemaker for the time being.
(All this on low dose Metoprolol.) The jury is still out on how the block will proceed and what the impact will be on me in future years, or how it will effect my capacity to exercise.
Flying back to Oregon was not that bad. I was uncomfortable sitting anyway, so it was more of the same. They gave me meds for nausea but I didn’t every feel sick.
Before leaving for the hospital, I bought a foam wedge to sleep on but after the second sleepless painful night my husband got me a recliner. That was bliss for a little more than a week and then my cardiac rehab tech said to get into bed because the recliner effects posture and my sternum would heal tight if I was in it too long. Luckily,
my own bed was comfortable by then, and I was strong enough to get in and out without using my arms. Surgery was 5/24 and I was home on 6/1 and I stopped narcotic pain meds on 6/3.
They didn’t get along with me.
I spent years informing myself about my condition, the surgery, the potential MD’s and facilities.
I went in feeling really good about my choices. Now I question how I weighted those choices. Some things, like fear of the actual surgery, or potential infections, the vent, turned out to be non-issues. Things I overlooked like the veracity of the surgeon, utterly unknown Docs performing procedures, complications I did not anticipate- turned out to be the real issues. I will say one thing : I should have, could have, gone in sooner - even though I was asymptomatic by the cardio’s standards.
The best thing about this story was my husband and my grown son and daughter and my best friend. What a loving and supportive team - I felt so reassured by their presence and the nurses were very accommodating of all of them.
The hospital tries to make the diet healthy, but the food is terrible and I had no appetite anyway. My son, who teaches cheffing made a batch of home made chicken soup, rice pudding, and granola (with yogurt) in the tiny kitchen in the hotel where they all were camped. That is all I ate the entire stay.
Thanks for listening. I hope those of you in the waiting room will glean some tips from this saga, and may you all have good outcomes and minimal pain!
Bonbet
