Kyle's Journal

I wasn't expecting so much emotion today. It's been quite a journey. Today I graduated from Cardiac Rehab and it felt good. I still have days where I get pretty tired, but I am light years ahead of where I was when I started. I improved my 6-minute walk distance by 44% and my functional assessments by 300%. Anyone who is considering cardiac rehab…do it! You will not regret it. (Also, my sweet family even came up to the rehab gym to celebrate with me today as they handed me my "graduation certificate"-they are better than I deserve!) I have almost no pain except for an occasional "pang" when I lift something carelessly or turn around too quickly. My family has been overwhelmingly supportive and I don't know what I would do without them. My dad and brother have cut my grass all summer long and have come over numerous times to lift something or help me out with random activities. I am incredibly grateful. I am totally used to the sound of my valve clicking and am sleeping well again. My INR is still bouncing around but I hope to get my own INR monitor soon so I don't have to go to the Coumadin Clinic every other week. I'm adjusting to new normals. Before the surgery I took no medicines. Today, I have 5 pills I take almost every day. I have to check my blood levels every other week. I have to be a little more careful with lawn work and other activities because if I bump my hand or scrape my leg, I'll be holding pressure for 20 minutes trying to get it to stop. I have days where all of this doesn't bother me. I have days where it occupies my every thought. I have times where I think about how much I have learned about myself through this process. And, I have times where I grieve that my life has changed dramatically and feel that I have aged 15 years in the last 5 months. But more than anything, I have learned how to be thankful for every "click" I hear and every day I have to share with my family and friends. And to my healthcare team who has helped me and cheered me on along the way…you rock! I am proud to call you my colleagues. Thank you from the bottom of my heart.

Last week I hit the 8 week mark and I felt the best I have felt in a long time (maybe even compared to right before the surgery). I actually jogged from my office building out to the parking garage (a few hundred feet), and I didn't get winded! I started doing the rowing machine and lifting weights at cardiac rehab as well. My INR still seems to be jumping all around, but I think we are honing in on a good dosage and it is not worrying me as much. I still feel a little "fragile" and have to be careful, but I am feeling stronger each day. If you are freshly post-op and feel like you're never going to feel better-been there. But it does! Just be patient with yourself-you'll get there!

7 weeks post-op and I returned to work. I made it through the first week! I also started cardiac rehab the week before so I am really starting to feel better. I still feel "fragile" for lack of a better term. Everyone at work stated, "You look SO good!" I was pretty amazed at this since I have not heard this phrase too many times in my life (possibly never). So, I think this may be the result of one of two things: 1) The open-heart surgery drastically improved my looks and I should begin modeling, or 2) I don't look nearly as bad as they thought I would. I think I'm going to go with #1…I sincerely thank Dr. Cook for jump-starting my modeling career. My INR continues to jump all over the place, but my doctors all say that is pretty normal for the first 3 months. The other night, my gums spontaneously started bleeding at about 10pm at night and didn't stop until 1am after I called the doctor and held pressure for about a half an hour. My INR was 3.3 the next morning. My mind is starting to want to start running and riding my bike again (which is a huge improvement) but my body is saying, "hold-up"! I'm just learning to be patient and let my body catch-up.

My INR continues to jump all over the place. I have been incredibly intentional about trying to keep track of my Vitamin K intake but have quickly discovered it is nearly impossible…since Vitamin K content is rarely on nutrition levels. I've been moping around for the past few days, frustrated that I can't get my INR under control…but today I decided to turn to ACTION! I'm petitioning the President! Go big or go home! Will you sign the petition too? Thanks! :) https://petitions.whitehouse.gov/petition/require-food-producers-list-vitamin-k-levels-nutrition-labels-help-20-million-american-blood-thinner-patients

Today marks two-weeks post-op my life-saving/changing surgery. Two weeks ago, I was scared to death. I entered the world of healthcare on the "wrong side of the bed rails." I placed my trust in a team of humans who I counted on to be attentive, compassionate, and skillful. I placed my trust in my Creator, who I hoped was somehow, someway, hearing the petitions of me and my family and friends to keep me on this Earth just a little longer. I entered an ultimate state of complete vulnerability. Two weeks ago my hair was shaved. My clothes were removed. I was anesthetized. Tubes were placed in every orifice and when they ran out of places to put them, they created a few more. My chest was sawed open. My heart was paralyzed. I was placed on several machines that replaced my heart and my lungs. My heart was cut open. A man-made valve was sewed in. My heart was shocked back to life…and life returned to my body. As I have re-engaged in "life" and social media this past week, my news feeds have been filled with confederate flags, rainbows, apocalyptic doomsday predictions, and misused Scripture. But I must say that I read these rants with a slightly different perspective than I did a few months ago. I read them now with a metallic click, click, click, keeping time softly in the background. With every metallic click after metallic click, I am reminded…I'm ALIVE! I'm ALIVE! I got to tuck my three gorgeous kids into bed tonight. I get to snuggle up next to my faithful wife tonight. I get to spend time with friends and family I love deeply. I get to sit out on my deck and feel the sun warming my skin. I have had the blessing of thinking deeply about my mortality over the past few months-an opportunity that is not often provided to many 32-year-olds. I have the privilege of being loved on by so many: Cards, phone calls, meals, and (very gentle) embraces. Gentle, yet powerful reminders that I am loved and cared for. ...Humbling opportunities for taking inventory of the blessings that fill my life. Introspective moments for considering what is important, what is immediate, and what should demand my time, energy, and commitment. The click-click-clicking is a powerful reminder of the preciousness of each moment. It is an audible reminder that each of us are not guaranteed our next, "click". And so, do we fill the time in between the clicks we do have with "woe is me" selfishness, tirades against people we don't even know, and worries about an earthly kingdom? Do we pledge allegiance to a temporary piece of multi-colored cloth? Or do we fill the time between the clicks with words of affirmation, hugs, kisses, thank you notes, and a spirit of gratefulness? Tonight, I choose the latter. Tonight, I sleep with a grateful and peaceful heart-a heart that happily clicks…clicks…clicks...

Today is the first day I can say I actually feel pretty good. I have had really bad headaches and have had trouble sleeping so the surgeon is going to take me off the Protonix (Pantoprazole) to see if that helps. My blood pressure has also been bottoming out (80s/50s) so we are cutting the Metoprolol doses in half. My INR today was 3.0 so we are finally leveling out where we should be. I walked outside for 15 minutes and got pretty winded but felt good. I follow up with my PCP tomorrow to get him back in the loop of things. I've lost 10lbs (and didn't have much to lose) so I am feeling pretty puny. Spending most of my time hanging out inside and writing thank you notes. It's been great to practice gratefulness. It's great to breathe deep and be alive!

Post-Op Day 1 By the next morning at 4am, they began taking some of my lines out. First out was the Swan-Ganz line. They then took out my arterial line. My weight was up a little to 60.8kg and my INR was 1.4. The nurse got me up to the recliner and I walked a few steps with the nurse (literally about 5 steps) before I got really dizzy. The whole day was pretty fuzzy and I just drank a little of a smoothie from McDonald’s and a few bites of mac & cheese. I took a few more steps in the hallway with the nurse. Post-Op Day 2 Night nurse took out urinary catheter and chest tubes. Neither of these hurt really just felt a little uncomfortable. Weight dropped a little back to 59.1kg and my INR was at 1.39. Started 2.5mg of Coumadin that evening. My family said that my color was finally looking normal and I started having an appetite. I was able to walk around the CVICU twice but was really tired. My heart rate was staying rather high (110s-120s) so they increased my Metoprolol to 25mg twice a day. Blood sugars were being checked hourly while I was on an insulin drip but were under control and so they decided to stop the hourly checks. Post-Op Day 3 The night shift nurse took out my internal jugular IV in my neck which allowed me to feel much more comfortable. I finally felt up to taking a shower though it took everything I had to finish the shower. Afterwards, I took a nice long nap. I was able to walk 3 laps around the unit today (very slowly). Felt like having some visitors so visited with some friends. Post-Op Day 4 My INR jumped up a little and so Dr. Cook thought I might go home the next day. I was able to walk 4 laps around the unit and walk up a small set of steps. I had a good strong appetite and ate pretty well. Numerous staff came in (dietician, pharmacists, etc.) to work with me on what taking Coumadin would be like. Post-Op Day 5 INR was up to 2.4 so they felt they could send me home. Had about an hour of discharge teaching they went through with me and then wheeled me out to the car to go home. It was a little overwhelming thinking that I wasn’t going to be under the close watch of the ICU staff and felt a little tearful at different times during the day. The 30-minute car-ride home was exhausting and we arrived at my mom and dad’s home around noon. I slept the rest of the afternoon. That evening after it cooled off a little, I walked about 50 feet in the back yard to get a little exercise and it wiped me out. Post-Op Day 6 Sunday-Father’s Day! My wife and kids got me a really cool print for my office at work and my brother and his family hung out at the house much of the day as we got to hang out with my mom and dad as well. I’m trying to cut back on my Oxycodone and have it spaced-out to every six hours – down from every four hours. I also have tried to cut down the Colace by increasing my fluids and eating bran flakes every day. So far, it’s worked. Last night, I woke up feeling really uncomfortable and so took an additional Oxycodone and eventually went back to sleep. I’m not in a lot of pain – just feeling really uncomfortable and restless. I also have been feeling really cloudy-headed so have been trying to cut out the drugs as well. I’m still using my incentive spirometer about 4 times (10 breaths each time) every day. Home Health came out today as well and admitted me to their program. Nothing big to report. Post-Op Day 7 Monday-The Home Health nurse came out again today. I was a little disappointed that my INR dropped a little back down to 2.2. I knew it was not where it should be when the nurse pricked my finger and the blood didn’t come gushing out. I have been working really hard to keep track (using an iPhone app) of my Vitamin K intake and it really made me feel like it was all a waste. Oh well. I’ll pick my self back up and try to figure this thing out. I’ve also been feeling hot and cold flashes all day and night. One moment I will be burning up and have a fan on me and the next minute I will freezing cold with teeth chattering, asking for another blanket. I don’t have a fever and my wound doesn’t look infected – I have seen other people on the site mention that they have felt this as well. Post-Op Day 8 Tuesday-The week is creeping by. Today I walked a few hundred feet and felt a little better. My blood pressure was really low when I got back 84/50 so I rested and drank a lot of water. I’ve just felt really zapped and think I might still be a little anemic…it sounds like a great excuse to eat a steak! ☺ Melissa has graciously offered to take-out a 8-oz sirloin from Outback Steakhouse and is on her way back home shortly. I am also starting to write some thank you notes to friends, family, and co-workers who have been so gracious with visits, calls, and meals. I feel like I have plateaued a little bit and it’s a little frustrating. I also lost a few pounds and have been down to my lowest weight in years which is making me feel puny. It also hit me that I am taking 7 different pills every day. Before this I just took a little Ibuprofen if I had a headache- that was the most meds I ever really took. Just ready to start feeling good. Having to work really hard to not get in my head and start feeling sorry for myself. There are lots of folks that are much worse off than me and I am trying to be grateful! Onward and upward!

Eight days ago at this time I was on the heart-lung machine. Today, I am recovering at home (actually my mom and dad’s). Today is the first day I actually feel alive and somewhat normal again. The moral of the story is…YOU CAN DO THIS! Now, I will step back to the beginning of this journey and bring you up to present. October, 2015 – Was seeing my cardiologist for my annual check-up (for my Wolff-Parkinson-White Syndrome) and told him that though I had been exercising and working-out, I just felt that my heart was pumping harder than it should and I just felt out-of-shape. He totally brushed me off and said I was “young and healthy and my EKG looked fine” and come back in a year. He didn’t even listen to my heart. I thought this was an important thing for my cardiologist to do (understatement) so I switched doctors. I wasn’t overly concerned but I know my body pretty well and wanted to go with my gut. November, 2015 – Went to my new Cardiologist (Dr. Richard Henthorn, Mercy Hospital) and he listened to my heart for 10 seconds and told me that I had a “huge murmur” and that this was probably why I felt my heart was pumping hard. He then sent me for more tests. Meanwhile, I had got a gym membership and began working out 3 times a week. Still, I just was feeling really out of shape. December, 2015 – Completed an Echocardiogram and it showed “severe aortic regurgitation”. The doctor called me about the results and told me that I may need a valve replacement in the future but wanted to run some more tests. January, 2015 – Completed a Transesophogeal Echocardiogram and it also showed a “functionally bicuspid aortic valve and severe regurgitation”. Surgery was recommended “sooner rather than later”. I began really struggling with anxiety and so my PCP put me on Paxil. I took the first dose and I had a melt-down and started hallucinating. I will never take that medicine again! Also, at the same time, I got a really bad bursitis of my elbow that sprung-up over night. My PCP put me on two antibiotics and I had a big allergic reaction to the meds complete with swollen lips, and rash. Took a trip to the ER for steroids, Benadryl, and further evaluation. That night, when I took the steroids again, my heart rate sky-rocketed up to 120bpm. I called my PCP and he just advised we stop everything if the rash was going away. After that, I resorted to chamomile tea, yoga, and guided imagery…yes…I got rather crunchy…but it worked. February, 2015 – Being a former ICU nurse, I knew the nurses would know who they would want cut on them. So, I went to the couple of hospitals in my health insurance network and talked to the nurses in the CVICU. They all recommended Dr. William Cook at Mercy Fairfield Hospital and one of the nurses actually had her son-in-law have an Aortic Valve Replacement with Dr. Cook several months ago and he did really well. I figured if a nurse who works with his patients every day would send her own family to him, that said a lot! Also, they invited me to talk to an 80-year old patient who had just had an AVR two days ago. I went in to talk with him and he was so encouraging. He told me that he was terrified but it wasn’t that bad and that he had only been taking Tylenol for pain. He was sitting up in the chair and flirting with the nurses. That was enough for me. Dr. Cook it was! March, 2015 – I set-up my appointment to visit with Dr. Cook and when I was sitting in the waiting room, ironically, the patient I had visited in the ICU was in the office as well – doing great! Melissa (my wife) got to meet him and his wife and it again was very encouraging. Dr. Cook spent over an hour talking to be about my options and we left with a surgery date: June 15, 2015. The valve would be mechanical due to my age, and the approach would be traditional open-heart. He was so kind, compassionate, and calming. I felt good but anxious about my decision. April and May, 2015 – The tests continued: Heart Cath to make sure all the heart vessels were clear (which they were). I was nervous about the procedure but it was pretty easy but was pretty sore afterwards. The procedure was on Thursday, I took the Friday off and went back to work the following Monday. They also discussed performing a cardiac ablation to fix my WPW problem (wiring abnormality) since it would be much more risky after my surgery when I am on blood thinners. But after a very long discussion with my EP cardiologist, we decided not to. June, 2015 4th – Went to the dentist to get a thorough cleaning and oral check-up. Oral health is so important in heart health. I also began flossing daily and rinsing with scope 3-4 times a day. I was not a good flosser previously. 9th - Pre-Op Testing was completed which included chest x-rays, ECGs, carotid dopplers, blood and urine tests, and a general orientation to the pre-op area and what we could expect on the day before surgery. 10th and Beyond -Began listening to a guided imagery/relaxation CD called “Preparing for Surgery” every night as I went to sleep. It was very helpful. -Practiced doing sit-ups and crunches daily to strengthen my core for when I have to move around without my arms. -Bought an incentive spirometer from a drug store to begin practicing to expand my lung volume in hopes of extubating more quickly after surgery. Did this every night leading up to surgery. -Kept talking with my friends and family and leaning on them for support and prayer. -Wrapped up everything at work and handed-off the projects I had remaining to my boss and coworkers. -Arranged for childcare for my kids during the week of surgery and for lawn help afterwards. -Cut out all caffeine in diet and worked to only drink water with meals. -I have a very high metabolism so I lose weight very easily (and don’t have much to lose) so I started drinking 4-5 Ensure shakes each day to build up my reserves. -Purchased a recliner and had it delivered to my parents’ house for after surgery. -Bought some extra HibiClens shower soap (more than what I had been given by the pre-op folks) and took a number of showers using it leading up to surgery. Night Before: -Had a great dinner with friends and they all prayed over me. -Drank lots of water all day. -Delivered our three kids to their respective family members who agreed to watch them. -Took my HibiClens antiseptic shower and making sure I had brand new clean towels and wash cloths. -Shaved my face and neck very closely. Surgery Day: I was obviously really nervous and Melissa drove me to the hospital. We arrived at 5am and registered and the pre-op nurse came and got me. She started my 16 gauge IV in my left forearm and the surgical tech shaved my legs in case they needed my veins. I had a bunch of friends and family all there with me who waiting in the waiting room while they got me ready. I was weighed in at 59.8kg. Dr. Moeller was my anesthesiologist. Before we knew it, they allowed me to give hugs and see-you-laters and gave me the Versed “sleepy medicine” at about 6:30am…and that’s the last thing I remember… From what I was told, I was taken back to the OR and the nurse called every 90 minutes to update Melissa. The first time they called was telling her the surgery was beginning. The second was that I was on the heart-lung machine and the valve was being replaced. The third call was that I was off the heart-lung machine and the valve had been successfully replaced. The fourth call was that the surgery was finished. Dr. Cook came out and met the family in a private consultation room and said that they were actually able to have put in a bigger valve than they expected (a 22mm) and it would provide for greater performance. I had no rhythm issues other than a short run of ventricular tachycardia but he was able to take care of it. After looking at the valve, he thought the valve damage was probably congenital. I was moved to a room in the CVICU and then the family was brought back. I had some trouble extubating due to some blood gas problems but was finally extubated by about 6pm. I didn’t rest really well that night due to some nausea and vomiting. My family said my face was very puffy and white and that was a shock to them. I wasn’t in any real pain at that time.

From Melissa, the wife ;) It is amazing what they do in the first 24 hours after surgery. Some of Kyle's blood gas numbers weren't exactly where they wanted him after surgery, so they needed to keep him on the ventilator a few extra hours yesterday. That part was not fun, but once his numbers got to where they wanted them, they took the breathing tube out and he was able to talk to me a little. He had one nurse assigned only to him the first 24 hours, so the nurses encouraged me to go home and sleep that night. It was a difficult decision, but I'm glad I went home to get rest. When I came in to see him this morning he was sitting up in a recliner and had already walked a few steps with the nurse. He is still in quite a bit of pain, but they are regulating it pretty well. He was able to eat part of a smoothie for breakfast and a few bites of chicken noodle soup for lunch. It is becoming apparent that recovery is going to be a long process, but right now he is meeting all of his goals. You truly do have to take this day by day and celebrate the small victories.

Hello everyone! This is Melissa, Kyle's wife. I wanted to report that Kyle's surgery went very well, and we are waiting to see him. Thanks to all of you for the prayers and kind words.

Awesome Nurses Bob and Debi who will be the friendly faces in the OR with me Monday. A combined 98 years of nursing at this hospital! ...both there since the hospital opened! Pre-admission testing and orientation. Chest x-ray, blood work complete.NURSES: Never forget the power you have to put your patient at ease. These kind professionals surely did! Makes me proud to be a nurse. Surgery Monday!

Today I was reminded that medicine is not an exact science. After a long talk with my Electrician (EP Cardiologist), we decided to not do the ablation. I won't bore everyone with the many risks and benefits we discussed but the bottom line is that we weighed all the options and outcomes and decided the benefits of not doing the ablation now outweighed the possibility of maybe needing it later. So, back on for keeping the repair work with the plumber only.

Well had my last surgeon appointment today and found out that they want to do an ablation to fix my wiring problem (Wolff-Parkinson-White Syndrome) before my open heart because of the risk associated with the procedure if I have to have it done later when I am on blood thinners (Coumadin) which I will need to be on for the rest of my life. Still need to talk with the Electrician (EP doc) but right now, they are anticipating doing the ablation on Friday the 12th, staying in the hospital Saturday and Sunday, and then having the surgery on Monday. Thanks for your prayers...just ready to be done with this!

The Cath was done and the doc reported all my coronary arteries were clear. He said he could tell my regurgitation was bad though so he was glad the surgery was scheduled for sooner rather than later. Next up: Pre-op labs and one last physical with the surgeon...then surgery on the 15th.

Got my heart Cath tomorrow. It's starting to get real. 19 days until surgery. Feeling my anticipation getting greater and greater. It's not as much anxiety now as it is anticipation. I just want to get it done and move on to the next stage of life. I'm also feeling more tired - probably a combination of stress and a more incompetent valve. At the end of each day, I seriously feel like I could go to sleep at 7pm. I really appreciate your prayers. Let's do this!

One month from today I will be going under the knife to become part machine (AKA Aortic Valve Replacement). I know some of you are saying to yourself, "What?! But you already are! I've seen your athletic prowess! You already ARE a machine!" Well my friends, don't let those skills fool you. This human specimen is in fact purely human. Just imagine my skills when I have a mechanical valve... ;)