Young at Heart

There are always two sides to every story and in this case I get to relate them both. So far I have been the patient, the main idea of this story if you will, but I could not have done it without my supporting characters. This segment of the story is about them....

While I was floating in outer darkness, oblivious to time, my family was waiting patiently in a room with fish. They survived the long day with an ipad and trips to the hospital cafeteria. As bored as they might have been, they stuck it out for me. I needed them there.

They spent their days strolling through the hospital, the kids especially enjoyed the children's wing. They had a little library there with a mini door for smaller visitors and a little Route 66 diner that I hear had soft serve ice cream. The cafeteria was a popular spot for them as well, especially the times they got ice cream!

One afternoon while Jason was tending to my every beckon call, my parents took the kids to Colossal Caves. They claimed it was pretty cool so I will just have to take their word for it.

My parents and the kids left me Sunday night and flew home to Vegas. I missed them, but I wasn't exactly the life of the party and I could not expect them to hang around the boring hospital forever. Lauren and Jace stayed with my parents until we flew home that Friday night. Besides Lauren losing her big toenail in a tragic bedroom door accident involving her cousin Hannah, all was well. They enjoyed swimming and playing with cousins all week- I am quite sure they did not miss Jason and I too much!

Heartbreak Hotel

6 nights and 7 days accommodations at the all inclusive University of Arizona hospital. It wasn't a cheap getaway but what I gained is priceless...

After the Ross Procedure was finished I was spoiled in the ICU. Everything was monitored and I felt protected. As I noted in my last post day 1 was pretty much a blur. I came to realize on day 2 that I did not realize on day 1 the simple fact that I had ultimately survived and had safely returned from the "nothingness" of surgery anesthesia. I will blame them pesky tubes and the morphine for my lack of acknowledgement for that blessing.

Day 2 (Saturday) became a treasure hunt of sorts. I knew about the two IV's in my arm, who could forget, and it was expected that I would have a large incision on my chest covering my broken sternum and newly stitched heart valves, but what were these other devices stuck inside of me? Here is what I found:

• not one, but two IV's in my neck: evidently one is a catheter that monitors how well the blood is flowing through my heart. So grateful those went in while I was knocked out.... there is NO way they would have succeeded if I were awake. Not happenin'!!
• catheter: this I did not mind because I didn't have to get up to pee.
• drainage tube: this tube protruded out of my stomach- about an inch below the bottom of the main incision. Pretty gross, but necessary to get all the extra fluid out.
• oxygen: this I liked. Pure, fresh oxygen delivered straight to my nose via lightweight plastic tubing. A breath of fresh air!!
•  A pulse monitor clipped to my finger. conveniently located on the same side as the IV's- who needs to bother using a left arm anyway??
• Electrodes: these I did not know I had until the doctor came and took them out on day 3. Here is their description- The Electrode-Set is a temporary cardiac pacing wire used to treat arrhytmias during and after open heart surgery. It consists of a twisted stainless steel, multistrand wire partially insulated with a sheath of blue or white polyethylene. Obviously they did not bother me while they were in, but taking them out..... ewwww!
• my heart pillow: not a device, but nevertheless it stayed attached to me. Remember how thirsty I felt? Well the first night out of sheer desperateness to quench my thirst I sucked down more apple juice than I should have. Tiny sips and pieces of crushed ice had been all I could tolerate, but I was so thirsty!! Two minutes later my stomach revolted against the advance of the apple juice. It came back up surrendering peacefully, not like a stomach flu heave, and covered my entire pillow in second hand apple juice. Needless to say the nurse replaced the soiled pillow with a fresh, identical one.

the nurses insisted that I go for a walk. With wires, drainage fluid and the mega-monitor in tow, I cruised the halls of the ICU in the hybrid walker wheelchair.

as expected I was awesome (haha) and when I returned to my room I lounged in the chair for a bit.

then I took a nap....

Day 3 & 4 (Sunday and Monday)

Sunday night I managed to eat half of a grilled cheese, up until then I just wanted to quench my thirst and let my throat heal from the irritation of the awful tubes. My parents and the kids flew home Sunday night, I would miss them but I wasn't exactly a ball of fun. I was just grateful they could be with me through those first difficult days. The nurses took out the arterial IV in my arm and the catheter, so now I had to get up to pee. Dr.Teodori and his partner Dr. Ross paid a visit and decided to take out the drainage tubes and electrodes. There was no special protocol, I simply sat in the chair while he pulled them out. Mind you I was not fully aware of the electrodes even existing and when he pulled I could feel them slinking through my cells like one of those alien worms that you see in the movies crawling under the skin of it's victim. Next was the tube, it was like pulling out the alien worm's supreme leader, all bulgy and plump fighting it's way through my fat cells. Once it was out Dr.Teodori pulled shut the wound with the pre-fab stitch that was strategically placed there awaiting this time. Finally, it was time to eradicate the nuisances in my neck. I had to lie down flat while they were pulled out and the nurse had to hold pressure there for 15 minutes to ensure that it closed up ok and I didn't bleed all over the place. Slowly but surely over those two days I had become almost tube and wire free!!


My dad and me. Is he napping or seriously bored??

The downside of freedom was my transfer to a humdrum average recovery room. I crossed my fingers that it would be full and I would be able to stay nestled in my security blanket, the ICU, a wee bit longer. No such luck! Late Monday afternoon my gurney was rolled out of the ICU and into reality. The only device that remained was my ordinary IV and when I arrived I was hooked up to a wireless EKG machine that monitored my heart. That first night I was lucky to have an empty bed on the other side of the curtain but that wouldn't last.....

Day 5, 6 & 7
(Tuesday, Wednesday & Thursday)

By now being a hospital patient had lost it's luster. Unlike the ICU, over here I had to swallow pills, have my blood pressure taken at all hours, be woken up early to be weighed, have blood drawn, and take a water pill early in the morning, then go back to sleep only to have my bladder wake me begging for release. It was alot of work.



Jason would accompany me as I walked the halls, by now I'm a pro and need nothing more than my pillow to make the trek. We even got permission to leave the floor and dine in the cafeteria- a treat when you have been corraled up in a hospital room. The prognosis was good that I would be checking out on Wednesday, the nurse even had the paperwork ready. Dr. Teodori came by to evaluate my condition, thought my lungs still sounded a little wet, and determined that I would need to stay for one more day. Bummer.
Thursday morning became Thursday afternoon and Jason and I waited with bated breath for Dr. Teodori to arrive and give us good news about leaving. He and Dr. Burt finally stopped by around 5pm. I passed the test and was cleared to leave. It was bittersweet though. I felt I would loose my mind and go stir crazy if I had to spend another second there BUT I enjoyed the secure feeling I had with the doctors and nurses monitoring me.

 



Finally leaving! Thank you Dr. Teodori & Dr. Burt!!

Then I was out.
We spent that night at the hotel. It wasn't so bad on the outside. I did just fine.
Now we just had to focus on getting home.....

 

My Achy Breaky Heart

August 10, 2012

Surgery Day

                       5:45am. Too early to think rationally: the only possible reason I am not high-tailing it out of the surgery waiting room. My kids are here, my parents, my husband. I am just ready to get this all over and done with. They call my name, Jason and I go back for surgery prep. I put on the hospital gown and am suddenly aware that I am now a patient. I am interrogated by nurses asking what I ate and when, along with my history of health. Dr. Teodori, my surgeon, and his P.A. Dr. Burt pay me a visit. I feel confident and ready. Then SHE comes in. The dreaded anesthesiologist. (I am not afraid to admit that I am a sissy when it comes to needles.) I look away and squeeze Jason's hand while the sharp metal pierces through my skin and into my vein, leaving behind an IV. It is done. I feel the relief and start to relax... prematurely. Evidently when you have major surgery, one torturous IV will not suffice, they insist on two. One is a normal IV in your vein, the second one; it goes in your artery. Same arm just six inches away, she takes a stab at the artery, but gets a vein. I am not looking but I feel something drippy. I ask if I'm bleeding, she tells me it is just the antiseptic. Jason later tells me it was blood but they were protecting me from freaking out. True. A second stab at it and I now have an arterial IV. She shows Jason the difference in color between artery blood and vein blood, one is darker than the other. Swell.  

        The wheels of my bed begin to roll. It is time. In the hallway I see my family, hug them, and don't want to let go. This was the worst part. I hoped for a favorable outcome but one can never be certain until it is achieved. The wheels started again, towards the surgery room, but I was out before we reached it. The next eight hours do not exist for me. I now love the anesthesiologist.

I was warned about the throat tubes.

I knew that they would still be in as I regained consciousness and they were. I would wake, they would gag me so I chose to try to sleep until they were out. I threw up while they were in and I heard the nurse telling me not to lean forward because I had just had heart surgery. Obviously I could not respond vocally but my mind asked her if she rather have me drown in my own vomit- it had to come out, natural instinct takes over. My plot to sleep out the tube time was foiled. The nurse kept insisting that I needed to stay awake for a time before the treacherous tubes could be removed. Through my fuzzy brain I would yell inaudibly at her that I was not going to stay awake until they were out!! I conspired within myself that if I could just reach up and pull them out just a smidge it would feel so much better. My efforts were in vain. My nurse was over me like a hawk; circling, watching for any movement to strike me down. I was not going to win this.

Then she tied my hands down.

I was DEFEATED

Panic grasped me now. Didn't they know I was claustrophobic? I turned my wrists every which way but they could not be loosed. Where was my family? Why were they not telling these people not to tie me down? A dry erase board appeared and the nurse told me to write on it what was wrong. I wrote: CLAUSTROPHOBIC

or so I think I did because I really wasn't awake enough to see and my brain was too cloudy to spell.

Then I was out again. Morphine sleep, where tubes dare not tread.

I do not recollect anyone pulling the throat gagging, torture laden tubes out- thank goodness. I was just awake and they were no longer there. Sweet relief.

I asked Jason later why he had not stopped the madness. He said that they were only allowed to see me after surgery for a minute then they were pushed back out to wait. I had asked him to video and take pictures of me after surgery, but they wouldn't allow any of that until I was coherent. I went into surgery around 7am. Jason figures I was out about 3pm, when they got a sneak peak, and they were finally allowed back into my room around 5pm, once the tubes were out of my throat. I do not remember much of that night thanks to the fabulous drugs that kept me comfortable.

And I was thirsty, really thirsty........

Driven by my Beating Heart....

It all seemed so simple, like it was someone else. Surgery was necessary and therefore must be done.But there was a glitch; it was not someone else, it was me and every time i realized that fact again, I felt the surge of panic regurgitate upward, inside my soul. My body felt healthy but a machine and a screen begged to differ. So I gave in. I had the Ross Procedure. This is my story.....

The Day Before...
August 9, 2012

The plane descended into Tucson, finally coming to a halt at the gate. Jason, myself, the kids, and my parents exited into the airport, then emerged into the Tucson heat. While Jason and I went to my pre-op check in, my parents and the kids checked out the hotel. Afterwards we drove the streets of Tucson and ultimately ended up at Trail Dust Town and had dinner at Pinnacle Peak Steaks. While there we watched a old west gun show, walked the streets of the old town, checked out some shops, and Jason and Jace went on the train ride.

For dinner I ordered the ribs. While I was eating Jason asked "how are your ribs?" My dad replied, "Ask her that tomorrow!" We all got a good chuckle out of that. Probably not the best idea to order up some tasty BBQ ribs the night before you are going to have yours cracked open......

That night Jason and my dad gave me a priesthood blessing. I was going to be OK. I didn't sleep much that night, just tossed and turned; but that made it easy to get up and be at the hospital by 5:45am.....

Summer Thus Far.....

Ahhh, the lazy days of summer....

no schedules to keep, sleeping in til your eyes refuse to stay shut, and lounging about until you feel like getting dressed. Well for the most part.

Even though we did not have any great vacation plans for this summer, we have been trying to squeeze in a bit o' fun.We celebrated the 4th of July at the Pisciotta's house with friends, carne asada, swimming, and fireworks. As usual we had a lot of fun.....



Lauren trying to parasail...





Jace shoots.... and he scores!!



We had lunch with a celebrity...

Ronald McDonald

 

Honed our bowling skills...

and thanks to the automatic rails, no one had to hang their head in shame because of a gutter ball

Jace was Rigby, he would want me to rub that in....

Of course there was a trip to the Galleria Mall...

They had some familiar looking mannequins in the window

Of course we had to check out the Hollywood rec center's new swim park

The kids had fun with their cousins and I saved a little girl from drowning.... all in a days work.

The Sunday before girls camp, Jason signed up for fire watch. So we decided to make it a family event. Our family and the Monson's (the other that signed up) went up to camp Stimpson and checked out the rope bridge, played games, chased chipmunks, found Lauren's tent, and made dutch oven chicken and potatoes. Everyone had a fun time!!

On August 3rd we celebrated my grandma's 81st birthday. You would never know she was that old!!

Happy Birthday Ma!!

Jason went to camp Arrowhead for a week in June with the Boy Scouts in our ward. Lauren went to girls camp at Camp Stimpson. Not to mention having friends over practically everyday and swimming whenever you want. So even though we did not get out of town we have still had some fun!!

My Heart Will Go On......(and on)

I abhor making decisions...

so of course I would have to make a major decision concerning the future of my heart and its desperately important job of pumping blood...

and not just two options, but four, for my mind to mull over.

Deciding on a replacement for your aorta valve is no simple task.

The first option: The Mechanical Valve

which would change my status to-

Half man/half machine, a cyborg if you will...

I could live with that.

A mechanical valve provides great durability, lasting 20 to 30+ years, I would be a grandma by the time I had to get it replaced. But like all superheroes, it has a weakness. It needs Coumadin (blood thinners) forever. That means monthly monitoring and increased risk of internal bleeding etc..

The second option: A Pig Valve; also known as a porcine valve and a bioprosthetic heart valve.
which would change my status to-

let's just face it..... Miss Piggy
would I still be comfortable eating a ham sandwich or would I then be considered a cannibal? If someone calls me a "ham" is it because I'm showing off in the spotlight or because they know I'm part pig? Would I begin to snort when I laugh? If someone says "Hey Babe" is it because they think I look hot or are they referencing the movie?


the best part about the pig valve is that there is no need for blood thinners, you can go about your life with no worries that your brain may be bleeding after you hit your head opening the cupboard. There is, however, a dirty side to the pig valve. They lack longevity, and only average 8 to 15 years of pumping your blood, at which point you are heading back to the operating room for another valve replacement surgery.

The third option: Human Homograft
which would change my status to-

Bipolar/ Split Personality
Would I develop new characteristics, tastes, or loves. Who knows.

The homograft is a valve removed from a donated human heart, preserved, antibiotic-treated, and frozen under sterile conditions. The good part is that they are well tolerated and require no blood thinners. But like the fatal flaw of being human, they do not last forever. Their shelf life is like that of the pig valve; about 15 years, especially in younger patients, which as far as open heart surgery goes, I consider myself to be.

The fourth option: Ross Procedure
which would change my status to

Mixed up and confused
switching important heart parts around just sounds confusing. Who would want to end up with two distraught valves when they were only born with one. Crazy talk. My heart won't know whether it is coming or going.

Step 1: Measurement of the aortic and pulmonic valves

Step 2: The aorta and pulmonary artery are opened and the aortic and pulmonary valves are carefully inspected to determine if the Ross is an appropriate procedure.

Step 3: The diseased aortic valve is removed. Then, the pulmonary valve (autograft) is removed and placed in the aortic position.

Step 4: The autograft in sutured in place and the coronary arteries are re-attached.

Step 5: A pulmonary homograft is attached to the right ventricle outflow tract.

Step 6: The aorta is attached to the autograft and the pulmonary artery is attached to the homograft - the procedure is complete.

The Ross procedure is usually performed on patients younger than ages 40 to 50 who want to avoid taking long-term anticoagulant medications after surgery. During this procedure, the patient's own pulmonary valve is removed and used to replace the diseased aortic valve. The pulmonary valve is then replaced with a pulmonary homograft.
The downside it that it is a longer and more intricate surgery that requires an enormously skilled physician and you are technically replacing two valves instead of one. Overall, 85% to 90% freedom from reoperation at 10 years. Approximately 75% to 80% freedom from reoperation at 20 years.The pulmonary autograft valve has a good chance of being a life-lasting solution for the aortic valve.

THE FINAL DECISION:

So which would you choose? Every choice has its pros and cons with no choice being the "perfect" choice. In the end I decided to go with the choice that my two highly skilled cardiologists recommended for me:
The Ross Procedure
I will be flying to Tucson, AZ for the surgery which will be performed by Dr. Michael Teodori on August 10th. I know it will all turn out great because there are a lot of things I still need to do like:

-hearing George Gray say, "Chandra Robb, come on down, you are the next contestant on The Price is Right!"
-Feeling dwarfed in the shadow of a Redwood tree
-Getting my picture taken in front of The Salford Lads Club in England
...just to name a few. Recovery won't be easy but lots of people have done it and so can I.