river-wear
Well-known member
Hi everyone,
I had my aortic repair surgery on June 11 and finally feel like sharing my story. I flew across the country to Philadelphia from California too, so I didn't have my computer with me. Posting via phone was challenging due to the blurred close vision post-surgery. My surgery was delayed on the scheduled day due to an emergency which required the team my doctor uses. They prepped me at 8:30am and gave me the "forgetting" drugs then, but when they took me back, I was put into cold storage (so to speak) until around 1:30pm. I don't remember anything after the initial drug given when I was still with my husband and sister.
The background: I have a rare type of bicuspid valve, based on which leaflets were fused; about 2% of bicuspid valves are like mine. The leaflets were partially fused, so there was a triangular hole that never closed. My regurgitation was rated at 5+ and was variably described by the surgeon as "torrential" and incredibly severe. Today my cardiologist said he's never seen one rated that high. Once they got in there, they found my aorta was normal, but the ascending aorta was at the high normal limit of 4.0cm. Also, the valve annulus was large at 31mm, when it should be about 24mm for someone my size.
Here's a summary of the procedure my sister wrote after speaking with the surgeon:
He snipped and sutured the triangular hole to close it and trimmed the opposite leaflet to ensure a good fit.
Then he placed a 30mm Dacron fabric band around the annulus to constrict the area to 23 mm and sutured it in place. This will give her a good long term outcome. It helps the area remain round, which keeps the two valve flaps meeting perfectly instead of elongating over time and creating a gap, which bicuspid valves like to do. It also constricts the opening to a normal size which helps the heartbeats to be more effective. This part is a relatively new procedure that has been done for about 18 months now, with great outcomes.
The techniques cited in the surgical report are El-Khoury Technique for the leaflet repair, and Lansac procedure for the sub-annular ring. An ascending aortoplasty was also done. I was on bypass for 138 minutes. Initial post-surgery ejection fraction was 50% (same as pre-surgery, actually).
Wednesday: The surgery was completed at about 5:30pm but I didn't start to wake up until a little after 11pm. I was still intubated and felt like I was suffocating. Fortunately they removed it after about 30 minutes, in spite of some discussion of leaving me like that until morning! I wasn't in any pain except in the area of my right shoulder blade. It was pretty bad; I heard the nurse say she was giving me morphine but it didn't put a dent in it. I think I woke up about every ten minutes all night.
Day 1, Thursday: Up into a chair to sit. It was scary to get out of bed, but it felt pretty good to sit and give my shoulder a break. I also got my first heparin shot, which wasn't bad, but I was still kind of numb all over. I was lucid enough to chat with my family a bit. I think it was later that day after I went to bed that they tried heat on my shoulder and that seemed to cure it. I didn't hurt much at all after that. During the night, the nurse tore off (literally) my surgical dressings before washing me. Unfortunately I lost a fair amount of skin with it. That's still the source of most of my discomfort - feels like a sunburn. I suppose some of it may be coming from the nerves being cut for the sternotomy. (Ha, mini!) The finger sticks for blood sugar stopped late in the day, I think. I was on an IV of Vancomycin for the first day or two also.
Day 2, Friday: Out came the Foley, the blood pressure sensor in the Swan Ganz catheter (but not the port) and the dreaded drainage tubes. None of the stuff pulled out hurt, but it was creepy as hell. It did hurt when they were snipping the tight sutures holding the chest tubes in place. Fortunately they pulled all three drainage tubes at the same time! Actually, I think the BP sensor came out on Day 1, and the rest of the port on Day 2. My neck was taped and retaped, which also wreaked havoc on my poor skin. I had a bad rash for the first few days too, but it didn't hurt - just alarmed a couple of the nurses. They also removed the port in my forearm they had been using to draw blood as needed. In the early evening I was moved to the step-down unit. I also met my digestive "milestone" and could walk to the bathroom with minimal help.
Day 3, Saturday: I had been taking a mix of a small amount of Percocet and (mostly) Tylenol, and discontinued the Percocet. I'm sensitive to Codeine and was beginning to hallucinate when I closed my eyes. I guess that's not unusual. I still didn't have much interest in anything beyond mindless TV and napping. I was started on solid food and could only eat a tiny amount, even though I was trying to eat to gain strength. The walks in the hall started.
Day 4, Sunday: Feeling decent and itching to get out. They kept me. I feel like they were conservative because they knew I'd be going to a hotel. They told me from the start that I was doing great. At this point, I was getting up a LOT to use the bathroom. My 15 lbs of excess water was coming off fast.
Day 5, Monday: In the morning I discovered I had thrush (fungal infection on my tongue from the strong antibiotics) - yuck. However, they let me out in time for dinner. YAY! I was sent home with instructions to take various supplements, one baby aspirin per day and 50mg of Metoprolol. In the hospital I had been taking 12.5mg Metoprolol four times a day. That didn't bother me. The 50mg knocked me out. More alarming (in hindsight) was that a nurse suggested I take all of my meds in the morning so I'd know how I react to them. That translated into missing half of my dose on Monday - which maybe doesn't matter...
Day 6, Tuesday: The visiting nurse came and found me shaky and nauseated from the Metoprolol. She agreed I should start taking that a little later each day until it's shifted to evening.
Day 7, Wednesday: Woke up with palpitations. Breakfast didn't help, so we called the nurse who suggested we go to the ER to get checked out. I was having up to 16 PVCs/minute but they didn't know what was wrong. My surgeon ordered a new echocardiogram, which was fine. They decided to admit me and I was back up on the heart ward a bit after dinnertime. I was so bummed, even though I realized it was for the best.
Day 8, Thursday: Took 25mg Metoprolol in the morning and that also made me ill. They took me downstairs for a 2-view chest x-ray and I was pretty miserable. An hour or so later I went into A-fib, which they confirmed via ECG. That is unlike any palpitation I have ever felt - however, I did have a few (very short) palpitations like that in the first days after surgery. It's kind of like a pounding under the left collarbone. I had told the doctors about the "harsh" palpitations, versus the "soft" ones I've been used to for years. Anyway, I stayed like that for about 3 hours while they called to have a PIC line put in so I could get Amiodarone via IV. While waiting, I went back into sinus rhythm on my own. (I got a heparin shot that hurt and with everything else going on, it made me cry. I wonder if that somehow knocked me back into sinus.) They still put in the PIC line and gave me a "half-load" of Amiodarone. The stuff stays in your body a long time and you have to build up a certain amount for it to be effective. That night they also started me on the pill version so they could monitor how I was doing.
I stayed under observation all day Friday - they want to watch 24 hours after coming out of A-fib. I stayed in sinus rhythm the whole time, so warfarin wasn't required. They let me out by noon on Saturday. I flew home on Wednesday, on my two week anniversary.
I'm feeling pretty good now. I saw my cardiologist today and he cut my Amiodarone down to the "maintenance" dose of just 200 mg/day. I was still in the first phase of loading, which was 400 mg 3x/day. He also said I can cut my Metoprolol to 25 mg/day. I'm so happy! The medications had been keeping me in a constant state of low-level nausea. I should be able to move around and get more exercise now. The doctor also said I should be able to get of the Metoprolol once I'm fully recovered.
Overall, I can say that while the time in CICU was a real test, the rest of this process hasn't been as bad as I feared. I'm dying to sleep on my side again, but that's pretty minor. Oh, and I seem to be hot a lot of the time now - my body just isn't controlling my internal thermostat very well. I hope this rather long post might be useful to someone. I know I benefited from reading about other people's journeys pre-surgery.
I had my aortic repair surgery on June 11 and finally feel like sharing my story. I flew across the country to Philadelphia from California too, so I didn't have my computer with me. Posting via phone was challenging due to the blurred close vision post-surgery. My surgery was delayed on the scheduled day due to an emergency which required the team my doctor uses. They prepped me at 8:30am and gave me the "forgetting" drugs then, but when they took me back, I was put into cold storage (so to speak) until around 1:30pm. I don't remember anything after the initial drug given when I was still with my husband and sister.
The background: I have a rare type of bicuspid valve, based on which leaflets were fused; about 2% of bicuspid valves are like mine. The leaflets were partially fused, so there was a triangular hole that never closed. My regurgitation was rated at 5+ and was variably described by the surgeon as "torrential" and incredibly severe. Today my cardiologist said he's never seen one rated that high. Once they got in there, they found my aorta was normal, but the ascending aorta was at the high normal limit of 4.0cm. Also, the valve annulus was large at 31mm, when it should be about 24mm for someone my size.
Here's a summary of the procedure my sister wrote after speaking with the surgeon:
He snipped and sutured the triangular hole to close it and trimmed the opposite leaflet to ensure a good fit.
Then he placed a 30mm Dacron fabric band around the annulus to constrict the area to 23 mm and sutured it in place. This will give her a good long term outcome. It helps the area remain round, which keeps the two valve flaps meeting perfectly instead of elongating over time and creating a gap, which bicuspid valves like to do. It also constricts the opening to a normal size which helps the heartbeats to be more effective. This part is a relatively new procedure that has been done for about 18 months now, with great outcomes.
The techniques cited in the surgical report are El-Khoury Technique for the leaflet repair, and Lansac procedure for the sub-annular ring. An ascending aortoplasty was also done. I was on bypass for 138 minutes. Initial post-surgery ejection fraction was 50% (same as pre-surgery, actually).
Wednesday: The surgery was completed at about 5:30pm but I didn't start to wake up until a little after 11pm. I was still intubated and felt like I was suffocating. Fortunately they removed it after about 30 minutes, in spite of some discussion of leaving me like that until morning! I wasn't in any pain except in the area of my right shoulder blade. It was pretty bad; I heard the nurse say she was giving me morphine but it didn't put a dent in it. I think I woke up about every ten minutes all night.
Day 1, Thursday: Up into a chair to sit. It was scary to get out of bed, but it felt pretty good to sit and give my shoulder a break. I also got my first heparin shot, which wasn't bad, but I was still kind of numb all over. I was lucid enough to chat with my family a bit. I think it was later that day after I went to bed that they tried heat on my shoulder and that seemed to cure it. I didn't hurt much at all after that. During the night, the nurse tore off (literally) my surgical dressings before washing me. Unfortunately I lost a fair amount of skin with it. That's still the source of most of my discomfort - feels like a sunburn. I suppose some of it may be coming from the nerves being cut for the sternotomy. (Ha, mini!) The finger sticks for blood sugar stopped late in the day, I think. I was on an IV of Vancomycin for the first day or two also.
Day 2, Friday: Out came the Foley, the blood pressure sensor in the Swan Ganz catheter (but not the port) and the dreaded drainage tubes. None of the stuff pulled out hurt, but it was creepy as hell. It did hurt when they were snipping the tight sutures holding the chest tubes in place. Fortunately they pulled all three drainage tubes at the same time! Actually, I think the BP sensor came out on Day 1, and the rest of the port on Day 2. My neck was taped and retaped, which also wreaked havoc on my poor skin. I had a bad rash for the first few days too, but it didn't hurt - just alarmed a couple of the nurses. They also removed the port in my forearm they had been using to draw blood as needed. In the early evening I was moved to the step-down unit. I also met my digestive "milestone" and could walk to the bathroom with minimal help.
Day 3, Saturday: I had been taking a mix of a small amount of Percocet and (mostly) Tylenol, and discontinued the Percocet. I'm sensitive to Codeine and was beginning to hallucinate when I closed my eyes. I guess that's not unusual. I still didn't have much interest in anything beyond mindless TV and napping. I was started on solid food and could only eat a tiny amount, even though I was trying to eat to gain strength. The walks in the hall started.
Day 4, Sunday: Feeling decent and itching to get out. They kept me. I feel like they were conservative because they knew I'd be going to a hotel. They told me from the start that I was doing great. At this point, I was getting up a LOT to use the bathroom. My 15 lbs of excess water was coming off fast.
Day 5, Monday: In the morning I discovered I had thrush (fungal infection on my tongue from the strong antibiotics) - yuck. However, they let me out in time for dinner. YAY! I was sent home with instructions to take various supplements, one baby aspirin per day and 50mg of Metoprolol. In the hospital I had been taking 12.5mg Metoprolol four times a day. That didn't bother me. The 50mg knocked me out. More alarming (in hindsight) was that a nurse suggested I take all of my meds in the morning so I'd know how I react to them. That translated into missing half of my dose on Monday - which maybe doesn't matter...
Day 6, Tuesday: The visiting nurse came and found me shaky and nauseated from the Metoprolol. She agreed I should start taking that a little later each day until it's shifted to evening.
Day 7, Wednesday: Woke up with palpitations. Breakfast didn't help, so we called the nurse who suggested we go to the ER to get checked out. I was having up to 16 PVCs/minute but they didn't know what was wrong. My surgeon ordered a new echocardiogram, which was fine. They decided to admit me and I was back up on the heart ward a bit after dinnertime. I was so bummed, even though I realized it was for the best.
Day 8, Thursday: Took 25mg Metoprolol in the morning and that also made me ill. They took me downstairs for a 2-view chest x-ray and I was pretty miserable. An hour or so later I went into A-fib, which they confirmed via ECG. That is unlike any palpitation I have ever felt - however, I did have a few (very short) palpitations like that in the first days after surgery. It's kind of like a pounding under the left collarbone. I had told the doctors about the "harsh" palpitations, versus the "soft" ones I've been used to for years. Anyway, I stayed like that for about 3 hours while they called to have a PIC line put in so I could get Amiodarone via IV. While waiting, I went back into sinus rhythm on my own. (I got a heparin shot that hurt and with everything else going on, it made me cry. I wonder if that somehow knocked me back into sinus.) They still put in the PIC line and gave me a "half-load" of Amiodarone. The stuff stays in your body a long time and you have to build up a certain amount for it to be effective. That night they also started me on the pill version so they could monitor how I was doing.
I stayed under observation all day Friday - they want to watch 24 hours after coming out of A-fib. I stayed in sinus rhythm the whole time, so warfarin wasn't required. They let me out by noon on Saturday. I flew home on Wednesday, on my two week anniversary.
I'm feeling pretty good now. I saw my cardiologist today and he cut my Amiodarone down to the "maintenance" dose of just 200 mg/day. I was still in the first phase of loading, which was 400 mg 3x/day. He also said I can cut my Metoprolol to 25 mg/day. I'm so happy! The medications had been keeping me in a constant state of low-level nausea. I should be able to move around and get more exercise now. The doctor also said I should be able to get of the Metoprolol once I'm fully recovered.
Overall, I can say that while the time in CICU was a real test, the rest of this process hasn't been as bad as I feared. I'm dying to sleep on my side again, but that's pretty minor. Oh, and I seem to be hot a lot of the time now - my body just isn't controlling my internal thermostat very well. I hope this rather long post might be useful to someone. I know I benefited from reading about other people's journeys pre-surgery.
