My Surgery Saga Day By Day

Day 1: Surgery Day - February 16, 2015: After 11 years of waiting and watching the big day arrived. The night before I had to wipe myself down with special anti-bacterial wipes. I repeated the process in the morning before leaving for the hospital to check in for surgery.

When we got the the hospital at around 6 AM, Dan and I were placed in a cubicle in the pre-surgery area. Then it was time for yet another body wipe. There was the possibility that I would need to undergo DHCA (deep hypothermic circulatory arrest) with cerebral perfusion (they basically cool the body down and shut it down but keep the brain supplied with oxygen through arterial connections.) Therefore, I had electro-encephalagram contacts glued to my head. I really looked like a Franmkenstein creation.

Finally, I was ready, said godbye to Dan and I was wheeled into the OR for my procedure.

Day 2: Tuesday, February 17, 2015: I woke up in the ICU at about 2 AM, again at 4 AM and yet again at 6 AM. I was still on the ventilator. I would remain on the ventilator for 17 hours after waking up, until 7 PM in the evening.

Dan

Stephen

Dan and our friend Stephen were bedside. I was awake much of the time and when I was I asked for pen and paper so that I could scribble questions and make requests. I was not in a great deal of pain, and my breathing was not encumbered by the ventilator tubes that were still deep in my throat.

My surgeon Dr. Grayson Wheatley at my bedside.

I had read somewhere that if you wake up post surgery and the vent tubes are still in, think of it like breathing through a scuba regulator. Since I am a scuba diver this worked well for me and I did not fight it or try to yank out the tubes. I couldn't have done that anyway since my arms were restrained. I was on the ventilator that long (17 houus) due to the length of my surgery (7 hours,) from 9 AM until 4 PM, and the complexity of the procedures performed resulted in the need for me to have an inter-aortic balloon pump installed to augment heart function post-surgery.

I felt generally pretty well for just having awaken from surgery, and I was finally taken off of the ventilator and the tubes were removed at about 7 PM.

Day 3 and Day 4, February 18 & 19th, 2015: I remained in the cardiac intensive care unit. Whie I felt good the day after surgery, I began to feel worse during this time. I was unable to get out of bed. I had zero energy. I felt like I was in declinbe and I frequently voiced my concerns about exhaustion to my caregivers.

Day 5, February 20, 2015: At 6 Am my nurses decided to have me get out of bed finally and sit in a chair. I tried as hard as I could with their assistance but I only made a few steps in the direction of the chair when I passed out cold. I awoke surrounded by a team of nurses with one of them using a breathing bag on me. It was clear that something was amiss. I was scheduled for a heart catheterizaton later in the day. After the cath it was decided that I would require a return trip to the operating room. I went into surgery at about 7 PM that evening for a condition known as cardiac tamponade, where fluid a clots develop around the heart post-surgery and prevent it from functioning fuly. Thankfully the procedure was relatively short and it was succesful. I was returned to my room in the cardiac ICU.

March 2, 2015 Just completed a 30 minute walk in the house sans walker. It wasn't that long ago that I couldn't even get out of bed. I have some puffiness in the ankles, but other than that I have no complaints at all. I haven't taken a pain medication in a week. If I can continue to improve a little at a time like this I'm optimistic that I'll be walking outside soon...if Old Man Winter will give us a break here in the Northeast. Day 13: Discharge To Home! Journal posted on February 28, 2015 My stamina all of a sudden leaped to the point where I can walk a lot and even climb steps! I never thought I'd get back to this point. So the insurance denial doesn't matter...the hospital has cleared me to go home later today! Tears of happiness I gotta tell ya. Day 12: Cardiac Floor Journal posted on February 27, 2015 Waited all day today for insurance approval to enter acute rehab only to be denied. So the next option is to enter sub acute rehab at a different facility maybe as early as tomorrow. I am medically stable and feeling good just not strong enough to go home. Day 11: Cardiac Floor Journal posted on February 26, 2015 My Afib spontaneously converted to normal sinus rhythm last night so I didn't need the dc cardioversion. May enter acute rehab tomorrow or Saturday. It's been a long, tough haul. Day 10: Cardiac Care Journal posted on February 25, 2015 Spent some time with physical therapy today. Bowels are working finally. Afib and high heart rate are issues the doctors are working on. Will be making arrangements to go to a rehab facility upon discharge. Sorry I cannot be as actively supportive of everyone here but you are all in my thoughts. Day 9: ICU Journal posted on February 24, 2015 Well,.tubes are out and I am medically stable, I think. The Afib that I developed when they took me off Amiodarone due to liver concerns continues to rock the boat and is very noticeable. I have zero strength and get winded at any activity. I met with physical therapy today and they are recommending discharge to a rehab facility. I know I can't go home in my current state if extreme weakness. Thanks everyone for the continued love and support. I am glad this thing is not ad bad for most of you as it has been for me. Day 8: ICU Journal posted on February 23, 2015 Thanks everyone for all of the support. My numbers are improving. Two chest tubes were removed this morning...two remain. My swan neck arterial line from Fridays second surgery is supposed to be removed today also. No appetite and taking meds to get my bowels to move. But slow progress is being made I think. Patience is necessary. Update Sunday Feb 22 Journal posted on February 22, 2015 Still in ICU day 7...trying to get heart function improved...outlook trying to keep positive...at least one more day then maybe I can try to sit again...thanks for keeping me in your thoughts Journal posted on February 21, 2015 Still in the ICU since Monday. Had a second full steroenotomy Friday to relieve fluid backup behind heart Original surgery was 7 hours valve, root, ascending and two cabg...been a tough week...hope I have turned the corner

Well, It's Time

PHOTO: Happy listening to the Wanamaker Organ

My surgery is tomorrow. It's been a long time coming. People often ask me "how do you feel?" Or they ask "how are you handling this?" Or, "how do you keep your spirits up, stay positive?" I usually respond that I feel fine and that having a wonderful husband, pets and a great life keeps me positive.

Dan points out that this whole thing, finally getting to the point of needing surgery, hasn't happened the way we thought it would. We figured I'd get progressively weaker and symptomatic, and that one day I would collapse like a friend did when his aortic valve went bad. But that didn't happen in my case. I think of my experience as more than a little surreal. This is because, with the exception of my serious episode last December 9 and a few lesser episodes over the moths and years, I usually feel just fine with minimal symptoms. I can still lift heavy things, walk five to six miles a day, and in short, do just about everything I want. I get a little winded once in a while climbing steps, but other than that I feel perfectly normal. So yes, it feels like I'm in some sort of surreal dream wherein I'm fine, a dream that never ends ... but I have to get this heavy duty operation anyway, that will rob me, (hopefully only temporarily,) of the strength and conditioning that I've worked so hard to maintain into my senior years.

There's a hill that I climb every day on my morning walk on my way back to the house. I've always said to myself that the day I can't climb this hill will be the day that I need to have surgery. But that's not the way it worked out. I can still climb the hill today but I won't be able to do it (for a while) after surgery. So now I say to myself, the day that I'm able to once again climb that hill...that will be the day when I'll feel recovered.

Made The Top Of The List!

All by myself...scheduled for Monday. The other photo shows the hand shower device and shower seat that I got to make life a little easier during recovery.

Eleven Years After Diagnosis: I'm Still Here!

PHOTO: Underwater selfie in St.Barth

I am in a great place (mentally) all set for Monday...no worries, bring it on. I have a busy weekend with a social event Friday evening, and Saturday and Sunday performances to attend. And I can drink my Sake until Saturday evening, how great is that? Finally, my weight...194.2 down 2.0 since last week and I made my target weight for surgery of 195.0. I have asked Dan to take many photos on Monday and Tuesday and to bring me my laptop as soon as I am out of the ICU. But who knows what condition I'll be in or whether I'll want to deal with it. We'll see. It's been quite a ride these past 11 years since my diagnosis. But like Sondhiem wrote ....I'm still here.

Household Preparations

We've tried to prepare for the next month or so by stockpiling groceries, especially heavier items that I won't be able to lift for a while after surgery. I also rented a power lift medical recliner to rest and sleep in. I won't be able to use my arms to push out of a chair, so the chair lifts you up half way to where you can stand without using your arms. Having the reclining function should aid with rest since I won't be able to sleep in my side, my usual sleeping position. Dan has also arranged for animal care help and he is looking into hiring a housekeeper so that the household burden will not be on him alone. It won't be a picnic but we should be able to manage the situation.

Intense, Busy Day With Pre-Op Testing

PHOTO: "Sternal Lok Blu" Rigid Sternal Fixation

Today was pretty intense. First I met with my surgeon's right hand man, a nurse-practitioner named Bill. Bill has been very helpful since I first met with him. Today he answered the follow-up questions that I had such as about the total number of incisions I would wake up with post surgery (7 or 8 including three or four drainage tubes, two regular IVs, an arterial IV, and a neck incision for a cardiac catheter!), what medications I would be on, probably at least six including a water pill, something for my bowels, a pain killer, a beta blocker for blood pressure medication, aspirin, and coumadin. I also asked Bill about the relative complexity of my procedure. On a scale of 1 to 10 with 10 being highly complex, my procedure a "Button Bentall" is an 8 or a 9. That's why you go to a major university center like Temple or Penn, a heart center of excellence, to get this type of surgery. Bill also explained the timings that my husband Dan can expect for my procedure. The operation will last between six and eight hours including prep time and post surgery housekeeping before I will be transferred to the ICU. If my procedure starts as scheduled early Monday, Dan can expect to get a report from my surgeon Dr. Wheatley sometime between about 1 PM and 3 PM. Bill also commented on the general anesthesia used. Two different agents are administered. One knocks you out and the other paralyzes you.

After meeting with Bill I met with my surgeon Dr. Wheatley. By this point in the process most of my questions had already been answered. I did disucss the possibility that I might require a permanent pacemaker post surgery. Dr. Wheatley told me that there is only about a 10 percent chance of that. Since I blog about BAV disease and aneurysms and my own situation, I might want to write further about it at some point. In this connection i asked Dr. Wheatley if he planned to take photos of my procedure. He indicated that he did not do this routinely but he would try to make some media available for me.

After meeting with Dr. Wheatley it was time for pre-admission testing. This included an examination by a nurse-practitioner, blood work, and chest X-rays. I got anti-bacterial body wipes that I must use the night before my surgery and also on the morning of the surgery. I also asked if I could see the cardiac intensive care facility and the step down unit, but apparently Temple Hospital does not allow casual visitors to these facilities.

Finally, Dr. Wheatley asked me if I would be interested in participating in an evaluation of an alternative sternal closure device, "Sternal Lok Blu," which are metal plates screwed to the sternum instead of wires. Dr. Wheatley feels that this method is superior to the wires. I agreed but since it is a study only half of the participants will receive the rigid sternal fixation devices and the other half will get the usual closure with wires. I'm hoping to be one of the lucky recipients of the Sternal Lok Blu closures. I won't know until after the study ends, though, in about a year.

So now I have only four days before surgery happens. The train has left the station and I'm on board. There's no getting off now.

Health And The Weather

One genuine concern leading up top surgery is how to keep healthy and avoid getting a cold, or worse, the flu. So I wear a face mask at cultural events and wash my hands so often that they are dried out. The weather is another concern, Luckily, the most severe weather seems to have headed well to the north of Philadelphia.