James's Journal

Surgery was 4 weeks ago today. I can drive! All scabs have fallen off, leaving pink reminders. It still hurts in my sternum if I cough or sneeze. Otherwise my only real pain is soreness/stiffness in my shoulders and neck. My main pre-op symptom was shortness of breath. I can feel that decreasing. When I go upstairs, I am not winded and breathing heavily. Little by little...

After posting some summaries yesterday, I thought I’d post some details today about what to expect could be attached to you as you go through your hospital journey. I don’t know if what I experienced is standard or not, but hopefully you will find this helpful. ICU I don’t remember much about ICU. I have very fleeting memories of faces or scenes, but nothing in detail. I don’t remember the breathing tube, although I’ve seen a picture of me with it inserted. The good news for you is that you probably won’t remember any of this either. URINE CATHETER I remember waking up for my first lucid moments about 16 hours after surgery. I had a weird urinating feeling. I slid my hand down to check things out and realized there was a urine catheter in place. They had this under control of course. Whew. When it was time to move from the ICU to the CSU (Cardiac Surveillance Unit), the nurse removed my urine catheter. It was about a 6 on a scale of 10. You learn to classify all sensations as gradations of the pain scale. It was awkward, but mercifully quick and done with. Not something to repeat anytime soon. DRAINING TUBE There was a draining tube inserted about 6 inches below my incision. It was removed by Dr. Castro’s PA just before I moved from ICU to CSU. He told me to keep breathing while he did it because if I held my breath, it would act as a clench on the tube and make it more painful. So I breathed. I would say it was less painful than removing the urine catheter but much more awkward and nauseating. Again, quick and done thankfully. I now have a half inch horizontal wound healing there. A clip was installed to hold it closed. The clip was removed on my last day in the hospital, leaving a couple of small puncture marks around the larger wound. INCISION It wasn’t until I was in CSU that I got a good look at my incision, albeit via iPhone. A nurse gave me a sponge bath one day and I asked my wife to take a photo of my incision so I could see it. It’s 4 inches long. It hasn’t given me any trouble (referring to the external wound only). It looks a little crinkly and I’m hoping it smooths out over time. I’m not a beach body, so nobody is going to be seeing it anyway, so I guess it doesn’t matter. It’s a mark of survival as well. NECK CANNULA I have 2 puncture wounds in the right side of my neck. This is where a neck cannula was placed. It’s like you see on someone’s hand for IV access. There’s a tube that goes inside your carotid artery and it’s about 4 inches long inside you. On the outside, there were 3 receptacles through which they could draw blood or inject medication. So it’s sort of like a medusa device on the side of your neck. It’s cool that they have such ready access to your blood since they have so many occasions where they need it. This one gave me some trouble though. When I walked, I had to make sure that my gown and “heart hugger” vest (see below) were not conflicting with the cannula. I can’t imagine it would be a good idea to rip this baby out of your neck while you’re walking. I have a beard as well, so there was tape pulling on my beard and tape catching on the gown. This is an area to be carefully tended to. EKG Through my entire post-op in the hospital, I wore a portable EKG. The nurses said they could see the activity from my EKG at the nurse’s station. I never saw that of course, but it sounded pretty cool. So I had those sticky EKG leads stuck all over my chest. We’re all familiar with that; right? The wires came out of my gown and into a small EKG device. The EKG device was stored in a gown pocket or my heart hugger vest. Every morning, a nurse would come in and change the battery pack on the EKG. On my last day, the sticky tabs were removed. I was a little red and puffy underneath since those tabs had been stuck to me for a week. MOBILE EKG There was one day mid-through my stay where I was wheel-chaired to a chest x-ray. My EKG leads were removed from my little pocket EKG and plugged into an EKG machine that was attached to a wheeled pole. One person pushed me in the wheelchair while the other pushed the EKG pole. It was nice to go on a field trip through the hospital. OXYGEN When I was in ICU, I kept setting off breathing alarms since my breathing was too shallow. I learned when I heard the alarm, I could do a few deep breaths and turn off the alarm. Later when I was in CSU, I had one of those oxygen breathing tubes on when I was in bed. Out of bed, I did fine. CPAP I use a CPAP at home. We were directed to bring the CPAP on the day of surgery. Someone came and got it and inspected it. It showed up in ICU with an approval sticker on it. Someone from respiratory showed up every night to see if we needed any help with it. They attached the hospital oxygen to the CPAP so that I got an oxygen boost as well. PACEMAKER LEADS Just to the left of the draining tube wound is a small pair of punctures. There were 2 wires inserted here and sealed under tape for my entire hospital stay. These 2 wires were pacemaker leads attached to my heart. They would have been used if I needed an emergency pacemaker. Luckily, that never happened, so on my last day in the hospital, Dr. Castro’s PA removed the wires. He told me to cough. I knew that meant he was going to pull. I coughed and he held up the wires. They were out. He showed me the bare ends of the wires that had been attached to my heart. I couldn’t believe he was able to pull that out without me feeling anything, either in the wound area or especially no skipping a beat in my heart. Just another day at work for him, I’m sure. PILLOW I was given a small pillow to hold over my chest incision. I was told that the pillows are stitched by volunteers. I think that’s really cool. Mine is black with a baseball design on it. Thank you to whomever stitched my pillow! I still use it between me and the seatbelt when I ride in the car. HEART HUGGER Check out www.hearthugger.com. I was given one of these and told that some prefer just the pillow while others prefer the heart hugger. I loved my heart hugger! It can keep a cough in the 8-9 pain scale rather than blackout status. I would also hold it in place as I got in and out of bed in the hospital. INCENTIVE SPIROMETER If you google this term, you’ll see what this is. You exhale and then slowly inhale. As you inhale, you try to keep a steady flow and try for a maximum lung volume. My ICU nurse explained to me that areas of my lungs needed to be reopened after being on the heart-lung machine. Pre-op, I was at 3000. Post-op, I did 500 at first. When I left ICU, I was up to 1500. Over the next few days, I was up to 2500. Two weeks post-op, I’m at 2750. BLOWING TUBE I don’t know what the proper name for this thing was. It was Evil to me. It was about 8 inches long with a couple of tubes sticking out. It provides resistance in both directions as you inhale and exhale. I was directed to do 2 sets of 15 in/out pairs each hour with a cough between each set. The idea is that this device dislodges phlegm and junk in your lungs to help you bring it up and out. I was not a cooperative patient with this tool though. If I didn’t feel anything moving, I wouldn’t cough. That’s because a cough that brings up nothing is just as painful in your chest as a cough that brings up something. Why waste an 8-9 pain-scale cough on nothing? I don’t advocate being cranky about this device as I was, but I’m alive. URINAL After the urinal catheter was removed, I used a urinal. All of your urine is measured, all day, every day, for the duration of your stay. Get used to this happening. They want to make sure that your kidneys are functioning, you don’t have edema, your weight is ok, etc. So you pee in a jug and leave it for them to deal with.

When I awoke in ICU after the tubes were removed, I told my wife "It's my birthday!" In this context, I meant my re-birth day...a day of new beginnings, new heart valve, extra life. I posted a photo earlier of my old heart valve lying lifeless on the table after it was removed from me. I am so happy my surgeon let me have a photo of it. For me, that's a profound moment in my life. All of my life up to then was affected by that valve, either physically or mentally. When I was 11, I had a few fainting spells. Then in middle school, I was sidelined into "adaptive" P.E. (meaning chess most of the time), which made me "different", which I hated. I moved into regular P.E. in high school but my valve kept me from getting an ROTC scholarship to college. Over 40 years, there were so many trips to the doctor. Every new doctor would exclaim "you have quite a murmur!" How would my life have been if I hadn't had that valve? Would I have been more active? Who knows. So I looked at the photo with a sort of wistfulness. The valve was out of me now. It's over. I'm 52 years old and I have a porcine valve now. What will life be like with normal blood flow? I don't know. But that day was my re-birth day and I'm on the road to find out.

When I was released from the hospital, I was given an Rx for Tramadol. I last took Oxycodone in the hospital. For several days, I took 2 Tylenol, 2 Ibuprofen and 1 Tramadol. After 4 days, I stopped the Tramadol. Now at the 2-week mark, I've stopped the Tylenol. Taking either Tylenol or Ibuprofen is enough to keep me from being tight in the chest. It keeps things flexible I think. I used to take 100 mg metoprolol for tachycardia that started in 2012. In the hospital after surgery, they set that to 12.5 mg twice daily. After seeing my cardiologist, I'm back up to 25 mg twice daily. We'll see how that goes. Heart rate is in the 70s now on 50 mg. I took losartan for blood pressure pre-surgery. Post-surgery, this was discontinued. My BP was normal for the first couple of weeks. It may go up again so we're watching it. At this point, I'm still not taking losartan. I have a walking treadmill in my living room, so I've been using that for my walking. I saw my local cardiologist a few days after I came home. She said all looks well. I was worried early on about a bump or knot at the top of my incision. I thought maybe I knocked a rib out of place or something. She said it's normal and the swelling will go down soon. I later noticed in my surgery binder that there's a notation there to expect a bump there and not to worry. I found that getting in and out of my bed at home was much easier than the hospital bed. The first couple of nights, I felt like it was hard finding a good position. I'm a side sleeper, so those nights were hard. I wasn't ready to sleep on my side. I felt like it was hard to breathe sometimes in bed on my back. That lasted only a couple of nights though. To get through it, I piled a bunch of pillows up and sort of slept upright holding a pillow pile. But now at the 2-week mark, I'm sleeping on my side. Yay! Some days, I'm feeling normal. I've had thoughts of going back to work. (I get the side eye from my wife on that one though.) Then there are other days where all I can think of is I need a nap. So I take each day as it comes. I'm still out of breath going upstairs. It's worse now than before surgery. Apparently it will sort itself out over time. I've had a couple of friends over. They said you'd never know I just came home from open heart surgery. It's amazing how quickly you can recover. I went grocery shopping with my wife about a week after I got home. I was thinking as I walked through the store, wow, last week I had open heart surgery and now I'm wandering through the aisles at the supermarket. It can be a little surreal. In the pre-op phase, I was thinking about getting legal papers in order "just in case". All of your focus is on the surgery. Then the surgery happens and your life continues. In some ways, it feels like a new life. My heart was going to run out, so this is indeed extra time I'm enjoying. It's a really odd feeling. Hard to describe. Thank you to this community for what you've given me. I hope these journals today will help guide someone else through the process.

I recovered in a private room (yay!) from mid-day 5/12 through mid-day 5/16. With one exception, I had fabulous nurses and many, many other wonderful caregivers. My wife got to stay in the room 24/7, for which I am very grateful. She was a wonderful advocate for me. She's also a medical professional, which is a bonus. I'm so lucky that she was with me. I don't want to dwell on the negative, but I want to bring this to every patient's attention as something to be aware of. The standing orders for me were for scheduled Tylenol with as-needed Tramadol and Oxycodone. I had one experience where my nurse would not give me anything other than Tylenol on her shift. I reported it and I believe it was dealt with. The nurse later apologized, citing a misunderstanding. As I mentioned in the ICU post, I was blowing 1500 in the spirometer when I left ICU. After my first few hours in my regular room with only Tylenol, I was back down to 500 due to extreme pain. I managed one walk during that shift and was supposed to try for another. I just couldn't do it. After we took care of this situation, things got back on track. The staff at Sequoia was outstanding. I think there was some miscommunication and I don't think it's indicative of their care overall. After this point, everyone was on board encouraging me to stay ahead of my pain. With sufficient pain medication, I was also motivated to work my spirometer to regain my lung capacity as well as achieve walking goals. I was determined not to get pneumonia or a collapsed lung or blood clots or anything that was in my power to avoid. I had nurses who would put walking goals on my white board. I took great pride in checking off the boxes one by one. I was a machine! So these days in the hospital were blowing into the spirometer, walking, eating hospital food, sleeping when I could, getting weighed, using a bed urinal and measuring urine. Your life really zones into all of these things, such as did you have a bowel movement? (A requirement for getting out of the hospital...so I made sure to check that box!) The biggest challenge while in the hospital was getting in and out of bed. They teach you techniques beforehand. Until your chest is cut open though, it isn't real though. I could do everything pretty quickly except getting into bed. That one really stumped me for a while. My wife finally showed me by getting into my bed in the way I was supposed to. I got it. With her help, I had it down. Of course, this took a few painful days. You think your chest is clicking and opening during these bed transfers. There's some clicking to be sure, but really your chest is fine. Another interesting thing is that some people (like me) have hot flashes after surgery as a reaction to the anesthesia. My first ICU nurse brought in a floor fan for me. I don't remember requesting it. She must have noticed my sweat. In my regular room, we kept the temp at around 68. My wife was a good sport about it. My nurses would comment how cold it was in my room, but I asked one nurse if other patients were like me. She assured me that it's common. This hasn't been an issue since I came home. So on Monday, 5/16, I came home.

On surgery morning, I woke up and repeated all of the steps mentioned in the previous post regarding the chlorhexidine shower. We arrived at Admitting. Off to a waiting room for a few minutes. Escorted to surgery. More waiting. After about 15 minutes, I was called in. Clothes came off. Gown on. Vitals. Questions. Met the anesthesiologist. He looked in my mouth and noted it was small. I was relieved recalling my bedtime worries from the night before. He said not to worry. He would be prepared. Then the fun began. The clipping lady came. She had an over-the-shoulder vacuum attached to a pair of hair clippers. She proceeded to clip all of the hair from chest to ankles. Curiously, not my arms. But she went everywhere else. She was very gentle and thorough and respectful, but it was tedious and I was glad when it was over. Then I was off to a shower room to repeat the chlorhexidine shower routine again. After showering, I was given some wipes, which I believe contained chlorhexidine or similar. One for each extremity. One for the chest. The nurse used one on my backside. Back to my little bed cove where I was reunited with my wife. There were a few more questions and then the anesthesiologist appeared. Ready to rock and roll. He gave me a "cocktail" as I called it. I remember waving to my wife as we started for the OR. I don't remember getting to the OR or anthing thereafter until I was in ICU. I believe I left my wife around 10:30 am and opened my eyes in ICU around 5:00 pm. Jump back to pre-op for a second. The nurse on that day took a moment to describe to me what waking up in the ICU would be like. She said you'll open your eyes and you'll still be connected to the ventilator. Don't be alarmed. This doesn't mean anything is wrong. You'll go back to sleep and wake up and everything will have been removed. She said to think in advance about how that moment will be so that when it happens, you'll know that everything is ok. That's exactly what happened, and I'm so glad she took that time to prepare me for that moment. My wife tells me I was not too happy when the tube in my throat was removed. I have absolutely no memory of that. My memory is as the nurse described: I woke up, knew I had tubes in me, went back to sleep and woke up without tubes. In my mind, that happened all about the same time. I have small snapshot memories of ICU. I remember putting my had up over the bedrail to hold my wife's hand and my daughter's hand. I remember my daughter leaving. The nurse brought in a fan. My wife said goodnight to me. But these are all fleeting quick snapshots. No continuous memories. At about 2:00 am the next morning, I woke up and joined reality again. I realized I had a great nurse who was flitting about checking machines and connections and being super quiet. When he realized I was awake, he started explaining things to me regarding what was going on. At some point, an x-ray technician came in with a portable x-ray machine. I was raised forward to a sitting position in bed. An x-ray plate was laid on the bed. I was laid back down. An x-ray machine came over me and they snapped an x-ray. They said it was good. My nurse explained the importance of the spirometer to me. It hadn't occurred to me previously that by stopping my heart and putting me on the heart/lung machine that my lungs would go unused for a time. He explained that blowing into the spirometer would open up closed portions of my lungs and get my capacity back. In pre-op, I blew about 3,000. In ICU, I blew about 500 to start. By the time I left ICU at 11:00 am, I was up to 1500. 24 hours after surgery, I moved from ICU to the CSU, which I believe is the Cardiac Support Unit, essentially a nursing floor for cardiac patients.

Hi Everyone! My surgery was two weeks ago. I had such great intentions of posting a running journal to help others. Didn't happen. Hopefully this series of summary posts after the fact will do. I live about 350 miles from my surgeon. My local cardiologist recommended him. As I would learn later, he's well-known and regarded by everyone I would meet along the journey. That was a great comfort. In addition, our best friends in our small town are the ones that recommended my local cardiologist when I moved here two years ago. The husband also had a double valve replacement from Dr. Castro, so I got a preview of what my surgery would be like. A couple of days before we departed for the Bay Area, they witnessed by Advance Directive for Healthcare and other legal documents. They also watched our dogs while we were gone. Such amazing, priceless friends. My wife and I arrived in the Bay Area a night early to take it easy and enjoy some San Francisco time before the surgery. We had dinner at our favorite restaurant and stayed in a motel near the beach. It was nice and a very non-stressful way to ease into the surgery days. On May 10, we arrived at Sequoia Hospital for an afternoon of pre-op appointments. The first stop was to meet Dr. Castro. He put us at ease immediately. He had time to talk and answer anything. He said based on my chart, he would have recommended waiting more than 3 more months. Good that we were there now. He showed us in videos from my angiogram how sloppy my valve was. Lots of blood backing up on the beats and not being expelled. He also said my aorta seemed enlarged and might need to be reduced. In my angiogram, my aortic valve was so tight that the probe couldn't get through to get a better look at the aorta. No worries, he said. It only adds about 10 minutes to the procedure to snip it tighter and reinforce it. I was glad he could take care of this at the same time. I received a 3-ring binder from his office regarding the entire surgery and aftermath. I wish I'd had that beforehand to study, but it's a great resource that I'm glad to have now. Next stop was a carotid artery ultrasound in the main hospital. (Dr. Castro's office is in an adjacent building.) All clear at the ultrasound. The next stop gave us a conundrum. It was back in the same building as Dr. Castro at 3 pm. At 3 pm, we could pick up our key for the hospitality house from the info desk in the main hospital...which is where we were at 2:30 pm after finishing the ultrasound. It would have been nice to get the key then since it was 90 degrees outside and the parking and reparking was taking its toll. But rules are rules. Have to wait until 3:00 pm for the keys. I said we won't go to the room until nearly 5:00 since we have another round of appointments at another building. No dice. Come back after 3:00 pm. OK. The next round of appointments were all sorts of registration steps and labs and x-rays. The phlebotomist nailed my vein supremely well. I was impressed. I'm usually one of those that they need to check both arms and hands, etc. Not for her. She nailed it. We were in a room with a nurse for quite some time. Lots of questions about health history. I got my wristband at this time. By then it was about 5:00. Headed back to the main hospital. Parked. Walked to the info desk and checked into the hospitality house. After getting to our room, we went out for dinner...me with my hospital wristband on. haha! What can you do. Back to the room. During pre-op, I'd been given a bag of goodies for 2 pre-op showers. I can't recall the name of the soap. I think it was chlorhexidine. It was a nearly clear bodywash. I was to use half tonight and half in the morning. They said to wash everything below the neck except the genital area. This sounded to me like an instruction to heed well! There was a combo brush (on one side) and sponge (on the other) to wash my nails with. There was a small plastic tool to scrape under my nails. I was to use the chlorhexidine while using these implements as well. All done. I was in clean clothes and ready for bed. Not too ready for sleeping. My mind was racing to find some things to worry about. I have an overbite and a small lower jaw. I worried that they wouldn't be able to intubate me and I'd suffocate. So that's what it was like falling asleep that night.

Day before surgery. Several pre-op appointments. Tucked into the hospitality house for the night. I'm nervous, yet I feel good about Dr. Castro. Today we decided on the porcine valve. Happy my wife is with me through every step of the way. I'm very lucky.

I've been reading stories on this site for several weeks after I found out I was on the path to an aortic valve replacement. Today it got real. I'm on the schedule now: May 11th. I got a little jittery and nervous after I got off the phone with the surgeon's office. But I've been seeing a hypnotherapist in the lead up to the surgery in order to center myself and mentally prepare, so I calmed down as best I could. Now I have about 2 weeks to tie things up at work. When the surgery date was suggested, I opted not to try to control it and just let it happen. I figure it will never be at the greatest time and it's best to just get it over with. Less time to worry about it and just move forward.