Evan's Journal

This is just a flagship year for my family. I had open heart on June 13th. Then we had our third baby on July 6th, which gave us 3 kids in the house 3 or under during my recovery. My recovery has gone great, but this week we found out my wife has kidney cancer (at 34 years old). So to end the year with a bang, she'll be having her kidney removed in December. I suppose the good news is that with a $200k open heart surgery and who knows what for the baby c-section, my deductible and out of pocket maximums are already met for the year... On a side note, when the baby won't sleep I lay her on my chest, and the ticking of my mechanical aortic valve knocks her out every time.

I had my first appointment with my cardiologist Tuesday. They did an echo and there is zero leakage at my new valve. Heart rate was in the low 50's, so they're going to back down the metoprolol for a few months then try and take me off of it. INR was 2.0, which is about where it's been for the past month. They're going to hold me there for a few months, then let me come down to 1.5 for the rest of my life (or until the FDA approves on-x for use without anticoagulation). The doctor said she wouldn't go back to work earlier than I need to, but saw no reason I couldn't go back if I wanted to. For the most part there is no pain. I can sneeze all I want and don't feel a thing. The surgeon restricted me to lifting 40 pounds for 7 weeks, but that's up now, so according to him I'm free and clear. Since the new baby is only a month old, I'm going to stay out until august 22, which will be an even 10 weeks of recovery time. That'll let me help out some more at home, and I'll be sure to be good and ready when I return. Overall I'd say this ordeal hasn't been as bad as I expected. The anticipation before surgery may be the worst. The firsts three days post op are uncomfortable and kind of scary until you realize you're not going to bust open. After that the hard part is trying not to use your arms to move around in bed or get out of a chair. Knowing what to expect by reading all the info on this website definitely helped as well. It sucks having to take meds every day for life, but my 3 year olds already know the when daddy's watch alarms at 5pm every day, it's time for medicine. Getting used to the constant ticking wasn't so hard either. It bothers me more if I don't hear it, which is rare, but it's always a relief when I move a little or breathe and it starts ticking again. Oh, and the blood thinners aren't as scary as I had in my head. When I started them, I was paranoid about cutting myself or even brushing my teeth too hard. Well, about 5 weeks after surgery, I went to cut a peach, dropped the knife, and it went straight through my sock into my toe. It bled, but I just put pressure on it like I would normally. It seems like it took a bit longer before I could take the gauze away, but blood didn't just gush for hours like I'd convinced myself it would. Anyway, this is more of an entry to myself so that I can look back a year or more from now and remember what it was like. Oh, two more things. Got my insurance statement, billed from the hospital was $220,000. The negotiated rate was $86,000. I owe $0 since I'd already met my $500 deductible and max out of pocket for my family for the year. Thank you employer provided health insurance. Last thing. Maybe it's morbid, but something I'm glad I did was get a journal for each of my daughters and write to them the day before surgery. Yeah, risk is low, but with them being three, there were things I wanted to tell them that they wouldn't understand for another 10 or 15 years. Since everything went fine, now I can continue writing and give the the journals to them someday maybe when they graduate or get married. I only mention this because it did relieve stress before surgery. I wasn't as worried them not remembering me if I wasn't around. Keeping a journal for them was something I always wanted to do, but this was a good excuse to go do it. So long for now, and good luck to those still waiting. Waiting is the worst part...

Went into a-fib yesterday and my home health nurse had me go to the ER. My heart rate was bouncing between 65 and 150. They watched me for a couple hours, and with concurrence from my cardiologist bumped up my metoprolol from 50 to 75mg twice per day plus an additional 25mg as needed if my heart rate starts to elevate. It has been 4.5 weeks since surgery with no issues, so I was thinking about heading back to work. Think I'll hold off for a few more weeks now! I even sneezed for the first time a few days ago and had absolutely no pain. I didn't even have my pillow with me.

Had my three week follow up with the surgeon yesterday. Cleared to drive, lift up to 40 lbs, and start rehab if I choose to. Earlier today we added baby #3, Clara Rose, just 23 days after my AVR. Luckily she shows no indication she inherited any of my problems.

I honestly thought I'd be in worse shape than I am right now. My biggest problems are trying to keep from using my arms, and trying to stay motivated to keep walking around. It's too easy to lay in the recliner and watch tv while I'm off work.. My first day home I just walked laps in the house. Yesterday I got outside and did about a half mile on our street. Today I'll see if I can double it. I know I need to not get ahead of myself, but I think the baby that's due July 7 will be here any day now. My surgeon wanted to give me at least 3+ weeks to recover, but I think I'll be happy if I get one more week! We still have grandparents staying with us to help with the twins, and our awesome church started a meal train which is providing us dinner for about two weeks. My friends at work all chipped in and hired a lawn service to handle my yard (3 acres) for the rest of the summer. I don't think we could ask for better family or friends!

The great news is that I made it through surgery and seem to be recovering very well. The bad news is that before I woke up I had a coughing fit and tore a stitch between my new aortic arch and my old descending aorta causing internal bleeding. The nurses noticed it quickly and I was back in surgery just a few hours after my first one finished up. I've been getting greattteatmrnt by the staff and my family. The pain today is noticeably better than yesterday. I'm still having fairly consistent drainage, so I'll probably be in for another few days, but I'm looking forward to going home soon

All pre-op testing done, and staying at the guest house next door to the hospital so I can be there at 5:30 am tomorrow. Ready to get this done and over with. I'm most nervous about the arch replacement, but this isn't my surgeon's first rodeo, so I'm thinking positive thoughts. Camping with the girls was also a good way to spend the last weekend prior to surgery as well. This is probably my last entry until the flip side, best of wishes to everyone else around the world going through this tomorrow as well.

I got another call from the surgeon's office. They were able to pull my surgery up to the 13th to try and give me an extra few days of recovery time before the baby shows up. I'm working 72 hour weeks right now, so I'm going to go in to work next Monday to tie up any loose ends and take the rest of the week off to spend time with the family and go camping for a few days.

I got a call from the surgeon's office to let me know that due to a conflict, my surgery is being postponed 5 days to June 20th. My concern is that it gives me 5 less days to recover (17) before the newest baby arrives (if my wife goes full term). My wife made it full term with twins 3 years ago, so fingers crossed. Our c-section is scheduled for July 7th, so there may be some overlap where neither of us can drive. Will be fun times in my house with two 3 year olds, a newborn, a wife recovering from surgery, and me three weeks removed from heart surgery!