Cami's Journal

At my annual checkup this week, doctor confirmed my suspicions that all is not well inside my aorta. Had aortic valve replacement in 2014 and I've felt so much better. I've also been watching aortic coarctation closely. over the past 6-8 months i've been getting that familiar fatigue and taking shallower breaths and my blood ox measurement has steadily decreased from 98 to 95 and even lower sometimes. Anyone else had something similar or faced a second valve replacement surgery within such a short time?

So, six months and 18 days ago, I had my aortic valve replacement surgery. So far, I've participated in 2 5K races. Amazing. Last month, I ran the majority of the Color Run 5K, and finished in 50 minutes. Over the weekend, I walked the American Heart Association's 5K and pulled my 5-year-old in a wagon for the entire race and we finished in 58 minutes. My physical pain was related to pulling a wagon with a 45 pound load (should never have gotten rid of my stroller!), NOT shortness of breath or a pounding heart or sore legs, or any pre-surgery symptoms. I've learned two key lessons in preparing for these races. Number one, I can do anything I set my mind to. Number two, I never have to run a 5K again! I do not like to run any more because it hurts my knees and ankles. I am not 16. Give me a nice bike ride or a brisk walk and I am perfectly happy. I find that there are some days that I forget that I even had the surgery! My only lingering reminder is the lovely scar that runs down the middle of my chest and even that is fading. I say lovely on purpose because I love my scar. It reminds me that I got an amazing second chance and I'm working hard to take advantage of every day. Thank you to the University of Utah Cardiology department for giving me this second chance. My surgeon (Selzman) and cardiologist (Owan) are top-notch professionals. And special thanks to the U of U Cardiac Rehab team. They insisted I pick a goal for recovery and helped me reach it - thank you!! To my surgery class of March 2015 (Meredith, Yvette, Cassie, Mark), I hope you are all well, happy, and recovering. To all of you that are awaiting surgery, I hope this little community brings you hope, comfort, reassurance, and support.

8 weeks ago today, I was wheeled into surgery. Today I am going back to work. Unbelievable! Not that I am thrilled about the back to work part, but life is returning to normal. For those awaiting surgery - Matt, Cherilyn, etc. - you will not believe how fast the time will pass until you, too, are getting back to real life. For my surgery buddies - Meredith, Yvette, Mark, Cassie - can you believe we are this far out already? Yvette, you've had setbacks, but you'll rock this recovery. Your whole town is behind you!! Keep moving forward, walk frequently, do our cardiac rehab, and be grateful that we are able to fix our heart troubles. What a great blessing for us all. So, speaking of getting back to life, I have to go get ready for work now. The time off was wonderful, I think I want some more!!!

This is how my surgeon greeted me at my check-up yesterday. Apparently, my breast bone is healing well, my incision looks good, and my echocardiogram shows that my new Edwards bovine valve is working perfectly. I can drive next week, go back to work (part time) in 3 weeks, and "go live life," as he said. That means I can run a 5k by the end of summer. To go from no workouts in years, to training for a 5k is almost unthinkable! Wow. Just 3 weeks ago my life was so different. I could barely keep my eyes open, my legs ached, and I wasn't getting a wink of sleep. Now my legs ache from under-use only, I am not bone-tired, just recovery tired, and I'm sleeping so much better. Getting the valve replacement was the best thing I've done. The recovery is a challenge, to be sure, but it is worth it.

I will give the warning first, then tell the story of "My Lasix Overdose," it is funny - at least to me. Warning: it is not a good idea to think you can read and comprehend the many new medications and dosages the day after you are released from the hospital following major heart surgery. The story: got out of hospital on Sunday at noon. Spent a lovely day with my 5-year-old and husband and parents. Took my night time pills. No big deal. Monday morning dawned and I rose (far too early). Walked confidently to the pill bottle pile and took out the prescribed 4 potassium and 4 Lasix pills. Popped them and was so proud of myself. See, I said to myself, I can take care of my pill regimine by myself! I was using the restroom quite frequently all day, but thought nothing of it. My dad showed up early in the evening with a pill box and I began pills in it, and realized that I had taken 3 Lasix too many!!! The ratio was 1 Lasix and 4 potassium. Called pharmacy & Dr. Office and told take no Lasix till you visit your primary care Dr. on Thursday (today). Get into Dr's office, tell her the story and she gives me a urine test and sure enough, I am dehydrated. Takes blood tests to make sure I've not messed up potassium levels in my new heart, and then gives me a saline IV drip. In another post, I will explain how that IV stick that should take 1 second took about 30 (it hurt so bad, my toes curled). Blood tests said levels all ok too, so right now I'm ok. I'm feeling much better and go to surgeon on Tuesday just to be sure. Please, don't be an idiot like me, get help with all those new prescriptions! Feeling mostly good but tired and am using arms too much. Tomorrow is couch sleeping day while watching my fave girl movies. Yay!

Hello, Cami asked me to keep you updated on her progress after the surgery. The surgery was a success. This morning the old calcified value was removed and replaced with a bovine valve. The surgery was completed by noon and Cami was transferred to the cardiovascular ICU by 2:00 pm. Her progress since then has been better than we could have hoped for. They have removed her breathing tube and her heart is on its own. She is slowly coming out of sedation. She is communicating with pen and paper and has let us know that she is thirsty and too hot. The plan is to have her up and walking around tomorrow. Which I find tremendously encouraging. I wanted to thank you all for the support that you have given Cami in recent weeks. She has taken great strength from your friendship, stories, and the bond that you share. When you or a loved one face heart surgery it can be a very lonely feeling, there is uncertainty and anxiety about the road ahead. Your willingness to share your experiences and friendship has made the journey easier for Cami and for me and for this I am deeply grateful. Thank you Jared (Cami's husband)

It is 3:17 am, and my hospital check-in time is at 6:00 am. A more sane and rational person would be asleep at this time, especially when facing major heart surgery in 4 hours. I, however, cannot get a wink of sleep. Ugh. I don't know if this is medically accurate, but I swear, insomnia is one symptom of my specific aortic stenosis. I am counting on this valve replacement to help solve my insomnia!!! How I hope this will happen. The good news is, in less than 4 hours, I will be placed in a deep sleep and my brain will finally get some much needed rest. As for my poor, tired heart, it will get a much needed tune-up, but not much rest. As I face the surgery, I am calm and confident. I draw so much strength from my faith, my family and my friends in times of crisis or uncertainty. So, I spent the weekend giving my daughter a birthday party and had a big family dinner tonight and talked to all my out-of-town siblings. Crazy busy? Yes. Tiring and exhausting? Yes. Worth it? YES! Finding this site and reading all of your stories is also a great strength builder. I begin this journey with much knowledge and confidence as well as a vast support network. I could not ask for more. Meredith, Yvette, Mark - my best to you all this week. You'll be in my thoughts and prayers and I will draw on your strength today. I've had the craziest song running through my head all night. It comes from all the daily Dodger Baseball broadcasts I listened to as a kid. When the game was just about to start, you'd hear the following song - "It's a beautiful day for a ballgame, for a ballgame today. The fans are out to get a ticket or two, from Walla Walla Washington to Kalamazoo..." Tonight, it's a bit different in my head - my version goes like this: "It's a beautiful day for my heart valve, for my heart valve today. My surgeon's gonna cut the o-old one out and put a new one in and then I'll run about..." Hilarious or delirious? Don't answer that! I go now to try and get a little nap in before I go to the hospital. I will check in as soon as I am able. Thank you all!

This morning I reminded my daughter that daddy and I were headed to the hospital to talk to the doctors about my surgery. I asked if she had any questions for them and she said yes. Here they are in the order of importance: 1. Can mommy have sprinkles in the hospital? 2. Can mommy have frosting in the hospital? 3. Can mommy have sprinkles and frosting together in the hospital? 4. Can I come visit mommy at the hospital and bring her some sprinkles and frosting? 5. Can the doctor take a picture of my broken heart parts and also a picture of my heart when it is opened up so that we can be sure hearts are red? 6. I will bring you pink frosting and sprinkles. Luckily, the Dr. said that yes, I can have sprinkles and frosting and that of course she can deliver to me in the hospital. I got no firm commitment on the pictures though. I'm going to push for that on Monday morning! Not knowing what to expect today, it turned out alright. The only hitch was that the nurse had not put paper in her printer, so she thought I had no Dr. orders and made us wait for 45 minutes. Weird. Turns out this should be a textbook procedure, there are no surprises and I'm eligible for the less invasive sternotomy. Scheduled for Monday at 6 am - good thing I will be getting sedated soon, I'm not a very good morning person! I have all the confidence in the medical team, the hospital, and my body's ability to heal. To all my fellow surgery buddies with procedures next week - we can do this! Be strong, be well and be peaceful and we will all do just fine - there is strength in numbers, for sure! And if you need a little boost, find someone who will deliver you some sprinkles and frosting. I hear they work wonders on broken hearts.

March 3 is coming up fast! From the time of the dreaded "you need to call a heart surgeon" to my actual surgery day is not even 2 months. Life moves quickly sometimes. My parents arrived this weekend and have settled in for the duration. My daughter is beside herself to have them here, they are so much fun! I feel like I can go into surgery/recovery mode without any worries about my house or family - they are in good hands. My parents rock. Besides awesome parents, I have some pretty awesome siblings. While they all can't be around for this, just knowing they are supporting me at this time with good vibes, prayers, etc., is quite comforting. At a time like this, I consider myself one lucky gal to have all those sisters and brothers-in-law and nieces/nephews. There is strength in those numbers, I know this first-hand. My husband and I had a good conversation about the pending events yesterday and I replayed it in my head all day and all night. This morning I realized that rather than fear or dread for the surgery, I am actually excited for it. I can't wait to have a fully functioning heart so I can do things I used to and love to do. I love to run and want to do a 5K before the end of this year. I love to hike and ski and I live near some beautiful mountains that I can soon explore to my heart's content. And I can only hope that some of my insomnia will be alleviated and I can learn to love sleep, maybe even as much as my husband does! The hard part has to come first, the pain and recovery. But, as I read other stories, I see that in the scheme of things, this pain part is but a small moment of time. After that comes the good stuff that far outlasts the pain. Bring it on!

So the cath went very well. They went through my neck and wrist (looked at right and left ventricles) and found no surprises. Looks like a straight valve replacement. From what I remember the Dr. saying, through my post-anesthesia haze, the coarctation is minimal. I am also suffering from terrible insomnia. Whether it is self-induced or not, I cannot tell. But, if I do not get some sleep soon, I will be the crankiest heart patient ever. I just don't feel good about taking NyQuil or Benadryl to get to sleep every night. And, while ever-so-grateful that the cath results are so positive, I am freaked out about the expense of this sudden surgery. And the lost time at work, which could mean missing a payday or two. Tonight this seems like a heavy load to bear. It is my daughter's fifth birthday and I spent most of my mental energy worrying about the coming weeks. I tried to be in the moment today, but it was a challenge. We did enjoy a morning of birthday pancakes, Cinderella, and Little Mermaid. That was sweet. I know that things will look better tomorrow, but today, I can only see the hard part. If I get a good night's sleep, I know I will feel better tomorrow.

This week is my heart catheterization procedure - on Valentine's Day, ironically. Then I meet with my surgeon on Tuesday, Feb. 18, and I hope that I have a more clear understanding of both the surgery and the recovery. Both Jared and I are coming up with more and more questions; the majority of mine are related to insurance costs. Of course, my employer does not do benefits in the normal way. Our benefit year runs from April to April and this year, they are dropping my provider! Of course, this falls right in the middle of my recovery and so now I have to get as much info as possible to my new provider so that my case doesn't get lost or buried in the transition. Annoying... Physically I am very tired. My legs are starting to hurt whenever I walk up a flight of stairs and my eyes feel heavy with sleep. I am fighting a cold, but seem to be on the mend, as I slept a good deal of yesterday. Sleeping at night is still pretty elusive. I am a restless sleeper - sometimes I get leg cramps and my hands/feet get tingly if I don't sleep on my back. Good thing we have a new comfy couch! It is getting harder and harder to explain to Ellie that "no, I can't play with you right now because I need to take a nap." I tried really hard this weekend to do as much as I could with her so we can keep February as normal as possible. Sadly, our Valentine's celebrations will be minimal. I will have to miss her Valentine party at school. We also won't celebrate Valentine's Day as a family because I have to be at the hospital so early on Friday morning. She will get to celebrate with Erin and Kyle and Collin, though, as Ellie gets to go to her first sleep-over with them. Thanks, Erin! Work is even harder - I have ZERO concentration. Luckily, everyone is pretty understanding and I'm just wrapping projects - they're not assigning anything new. I'll update after my procedure on Friday.