One year "anniversary"

Three hundred and sixty four days ago I spent 10 hours in an operating room with my chest cracked open so that my congenitally defective aortic valve and several inches of aorta connected to my heart could be removed and replaced by Dr. Craig Miller at Stanford University Hospital with an "after market" upgrade. My heart was cooled to 50 degrees F, and if I'm reading the paperwork correctly my body or parts of it anyway were cooled to 70 degrees F! I was on cardiopulmonary bypass for 228 minutes. I now have a mechanical valve ticking away in my chest and I get to be on blood thinners for the rest of my life. I have an impressive scar down the middle of my chest and a fully healed sternum. But, I'm still here, I'm back to full health, and I've had no complications at all. I am thankful to be here looking back and seeing how well things went. Standing on the other side 365 nights ago was just a little intimidating! Tomorrow will be a much better day than September 18, 2009 was. I'm looking forward to having a celebration dinner with my amazing wife and my incredible parents tomorrow night. Last year I just wasn't up for dinner :-)

Jon

Deb Comes Home!

Finally, Deb comes home from the hospital. She is very happy to be back in her home and surrounded by familiar things. The cats are happy she is home as well.

Health wise, she is still experiencing high levels of pain and her mobility is pretty limited at present. She can get around once she gets on her feet, but the pain levels in transitions from sitting or laying to standing and vice versa are pretty high impact activities. She had a shower this evening and that helped her to feel a whole bunch better. Nothing like cleaning up to put a new spring in your step.

Barb, Dave, and Kevin Karsky stopped by to say hi and welcome us back home. Barb even ran to the grocery store for us -- very nice of her! Mom and Dad stopped by as well. We are all worried about the pain levels, but there doesn't seem to be much we can do except administer pain meds.

Since we just got home today and due to the continued pain levels and mobility issues, I will be working from home tomorrow so that we can get all settled into a routine and make sure Deb is settled. Depending on how it goes tomorrow, we may have Mom and Dad stay with Deb or at least stop by in the morning to check on her. We shall see how tomorrow goes.

Thanks for all the support and good wishes you've sent Deb -- she needed them and they helped. Keep 'em coming for a bit longer so we can get this pain knocked down and get her healing moving in the right direction.

Jon

Deb's Surgery - Day 4

Another no fun day for Deb. She was more alert today, but not much more. During last evening, she had a pretty high temperature and they ran the full gamut of tests on her to find out why. They checked for pneumonia with blood tests and a chest x-ray. They tested her blood for other infections. Turns out she had a urinary tract infection. They gave her some antibiotics and that seems to have taken care of it. She was up early this morning and called me to fill me on what she could remember. Another tough evening.

I arrived around 8:30 and she was somewhat awake, though still too groggy. Pain seemed to be under control, until she moved. She slept most of the morning until about lunch time. Just before lunch the occupational and physical therapy folks were by to see her. She took a very long walk down the hall the the physical therapy room to try out the stair climbing. We did it together to simulate her getting into the house at home and we passed with flying colors (we've done this before). She sat in the chair and we took another little walk before lunch. She had her food and then back to bed. Unless she is active and doing something, she is asleep. Even when doing something you have to watch her every minute so she doesn't nod off on you.

She received a beautiful flower arrangement from her group at work today -- that really brightened her day. Everyone has been commenting on how pretty it is.

Her nurse stopped in at around 2:30 to tell me that she wouldn't be going home today (which I pretty much knew anyway). She is just too out of it when she doesn't have pain and her pain is so high that it would hard for her to function at home. They will check her at rounds tomorrow and we will see if we can get sprung.

Dinner was uneventful, but she hasn't had much pain med today, so it is catching up with her again. The nurses are working carefully to ease her pain without knocking her out, but she is back to sleep again and still complaining of pain when she is awake. Wow, this is not going to be fun for her at all.

I need to head home for the evening, but I will be back in the morning. Hopefully we will be heading home sometime tomorrow.

Keep the good vibes flowing her way -- she really needs them!

Jon

Deb's Surgery - Day 3

Today was definitely NOT a good day for Deb. She called this morning early and wanted me to come and get her because they weren't doing anything for her pain at the hospital. I then called down to the floor at the hospital and suggested that it was time to get the pain specialists involved in this case because so far nothing was working. They assured me they would do that and by the time I got down the hospital (about noon), they had gotten involved. They had Deb on Oxycodone, Valium, morphine, vistaril, and gabapenten. Since they had already had her on Oxycodone and Valium before, I guess they must have upped the dosage this time. They had put an IV catheter in so they could give her morphine. They only gave her anything by IV once while I was there today, and then they realized the IV needed to be replaced! Anyway, once they got her medicated, she basically slept the entire day, and did she ever sleep hard. Since surgery, she thinks she has gotten only a few hours of sleep, so she was way overdue for a good snooze.

She had several visitors today. Our favorite barista from the Caribou Coffee in our Medtronic Mounds View campus, Tiffany, stopped to see her. And, Deb's niece Chane stopped to see her as well. They were both there around noon, when Deb was still awake so they all had a nice visit.

I went to lunch around 1:30 and Deb was sleeping deeply when I came back. She was due for pain meds at 2:30, but we couldn't wake her enough to give them to her, so we decided to wait until a little later. She finally got something around 5:00 again. She ate her dinner at the same time. She would put her fork in something and fall asleep. Then I would wake her and she would take the bite. Then I would wake her and she would chew. And so on, and so on.

Nikki, Jacob, Jessi, Luke, and Henry stopped by to visit, but I am sure that Deb has no idea they were even there. She opened her eyes a few times and smiled big every time she saw the grandsons and kids, but then right back to sleep. We all kept up a pretty active conversation and Jacob and Henry were very active and vocal as well, and she just didn't wake up for any of it. She was out. The kids and grandkids left around 7:30.

I decided to go home around 8:00 and discussed it with Deb's nurse. Then, we went to the room to see how she was doing. Her O2 saturation numbers were very low, so the nurse put her on oxygen. I tried to wake her enough for her to register that I was leaving, but I don't think I was successful. She doesn't seem to have any pain in this state, which is good, but she isn't actually there in this state either! Damned if you do, damned if you don't I guess.

Anyway, I'll go back down tomorrow morning sometime and see how things are going. Hopefully they can begin to wean her down without the pain getting ahead of her this time and we can get to the business of healing and getting her home. Right now it is possible that she may not even get home before Monday unless some things turn around real quickly.

Good night everyone, more updates tomorrow.

Jon

Deb's Back Surgery - Day 2

Well, Deb won't be getting out of the hospital today. She is really having a lot of pain and has a ways to go yet before they will green light her to blow this pop stand.

She has been sitting up in a chair and she did go for a walk earlier. However, she went a bit too far and almost passed out getting back to the room. The PT tech had to check her blood pressure and everything to see what happened. We think she just had too much pain and her body decided to start shutting down unnecessary functions, like standing and walking, to save itself. Anyway, we got her back to bed and she took a little siesta. So did I.

She is sitting in the spine chair again and just finished dinner. Now, she is waiting to go for another walk - not so long perhaps and not without a nurse or aide in tow. After that she will be back to bed and I'll be heading home for the evening so we can both get some sleep.

Tomorrow she has to work on climbing a few stairs and more walking. She bet Dad five dollars that she would be out of here tomorrow -- so she is worried about the $5. I told her I'd cover her losses :-) She will either be heading home tomorrow or Saturday. Hard to tell at this point.

Keep wishing her the best and send her good vibes for resolving this nerve pain she continues to have!

Jon

Deb's Day in Surgery

Here is a rundown of Deb's day in surgery:

• Woken at 3:45 AM by the alarm clock.
• Arrived at Fairview Riverside Hospital in Minneapolis at 5:15 AM.
• Checked in for surgery at 5:40.
• Deb went back for pre-op prep at 6:00.
• Deb is nervous and her pain has been stronger lately. It is probably time to have had this done. We are hoping for some real relief.
• I got to go back to the pre-op room Deb was in at 6:30. She had acquired some new wrist bands and a snazzy new gown with built-in heating bladders heated by blown hot air -- very cozy and comfy for her.
• Surgery is scheduled from 7:30-9:40.
• Dr. Schwender stopped to see Deb at 7:20. He says the actual surgery takes about an hour or so.
• Deb leaves for the operating room at 7:30, right on time.
• At 9:16, I spoke to Dr. Schwender. Surgery is over, everything went well. Rods and screws came out without complication. We have them in the room. You need to see the size of these screws sometime when you are visiting -- I suspect you will be surprised at how large they are! Dr. says the nerve was being pressured and he was able to relieve the pressure. I hope this helps relieve her pain.
• Deb went to recovery and then on to her room on the 10th floor of the East building.
• Mom and Dad arrived at about 10:30.
• We all got to visit Deb in her new room at about 11:30. She was in a lot of pain when we arrived and they were trying to get her pain pump adjusted and get caught up with the pain.
• Mom, Dad, and I went to lunch at Davanni's. Deb had lunch delivered to her while we were away and she actually ate a fair amount of it. Goulash and peas and a chocolate chip cookie -- yum, yum! No nausea, just pain so far.
• Mom and Dad headed home, Deb trying to nap and relax -- she didn't get much sleep last night for some reason :-)
• Deb is scheduled to dangle her legs over the bed tonight and hopefully stand up by the bed for a while. Pain is blocking her from doing it right now, but hopefully later. I'm sure the nurses will keep after her.

All in all, in spite of the pain, Deb had a pretty good surgical outcome and is well on her way to recovery. She has some significant hurdles to get over, but she is motivated to get out of here as soon as she can -- no offense to the hospital or the staff!

Deb says "Hi everybody and my back hurts like heck."

More later,

Jon

Deb's Turn In The Surgery Barrel :-(

Here we are preparing for another surgery in the family - this time it is Deb's turn. Not fun for either of us, but definitely harder on her than on me this time (maybe last time as well!)

Deb is having back surgery tomorrow (June 2) at Fairview Riverside in Minneapolis. She is having a nerve coming from her L5 vertebrae area decompressed to hopefully relieve some serious and unrelenting pain she has been living with. While he is in there, Dr. Schwender will also remove the rods and screws from her fusion which is fully healed and looks like a total success, structurally. Recovery is expected to be much easier than the fusion -- we sure hope so! Her doctor's current plan is for her to be off work for six weeks this time (it was 3 hard months last time).

I will be posting periodic updates here and links to them on Facebook so that you can keep up with what is happening.

Wish Deb the best - she needs it! She already has one pain in her posterior (me!) and I think one ought to be more than enough for anyone, don't you :-)

Jon

Six Months Post Surgery

March 18, marks sixth months since I had open-heart surgery to replace a congenitally defective bicuspid aortic valve and a portion of defective and bulging aorta. I wanted to update everyone on how I am doing. Executive summary is that I don’t know how I could be doing any better. I have more energy today than I had before I was diagnosed last July. My color is so good that I can’t count the number of people who have commented on it - enthusiastically (I wonder just how pale I looked before surgery!). I continue to exercise, more than I have in a long time. Ia primarily walk outdoors when weather permits. I am surprised by how much my condition affected me and amazed at how much better I feel these days!

Medically, I’m on beta blockers twice a day to control blood pressure (was once a day prior to surgery). I’m also on Coumadin (Warfarin) permanently. My Coumadin dosage stabilized very rapidly after returning to Minnesota after surgery. I think I’ve been on the same dose since mid-October and my INR is typically in the 2.1-2.3 range (my goal is 1.5-2.5). I have to go to the clinic about every six weeks for a 10 minute blood test. My sternum healed without complication and I’m able to do anything I need to without significant pain or deficit. I do occasionally feel a slight twinge or pull when I overdo things.

Now, a few more “frequently asked questions” and their answers.

Where did you go for your surgery? Stanford University Medical Center, Stanford, California.

Why did you go to Stanford? Long-story short, Medtronic’s senior vice president of Medicine and Technology, Dr. Stephen Oesterle, M.D., became aware of my diagnosis and offered to help us find the right surgeon for the job. He highly recommended Dr. D. Craig Miller at Stanford. I talked to Dr. Miller by phone and read excellent reviews of his work. With Dr. Oesterle’s high recommendation how could I go wrong so Stanford became the place to go. Dr. Miller made all of us, including my mom and dad, feel at home in his office at Stanford. Our confidence in Dr. Miller was high going in, higher after meeting with him before surgery, and my outcome has cemented our confidence in his skills and the care he took with my case. Dr. Miller is an outstanding surgeon and a genuinely caring human being. We clearly made the right choice for our situation!

How long were you out of work? I returned to work 3/4 time 8 weeks after surgery and returned full-time just after Thanksgiving (10 weeks).

What type of valve did you pick? Going into surgery, I was torn between tissue or mechanical valve. Medtronic does not have a competitive mechanical valve offering and tissue valves were only expected to last from 8-12 years in someone of my age and activity level. In the end, I picked a mechanical valve so there would be a low likelihood of future open heart surgery. I expected to wake up with a St. Jude valve, but due to anatomy and other factors, Dr. Miller selected a Carbomedics TopHat for my case.

Can you hear your mechanical valve? Yes, I can when it is quiet around me. There is an interesting combination of a higher pitched tick and a lower pitched thunk. It does not disturb my sleep or keep me from falling to sleep, nor does it disturb Deb’s sleep. The clicking provides me a built-in audible bio-feedback mechanism I use to tell if my heart rate is slowing or speeding up.

Are you on a restricted diet? I was on a modified salt diet after surgery and I have to be careful with certain green vegetables (they can interfere with Coumadin). The problem is not so much green vegetables as an inconsistent diet of them. I’ve never added much salt to my meals, so my daily salt intake didn’t really require much modification. Otherwise, my diet is essentially the same as it was pre-surgery. My condition was not diet or lifestyle related and, while I am taking better care of myself post-surgery, that is simply a bonus outcome not dictated by my disease -- thank goodness.

How much younger do you feel now than before surgery (Dr. Miller asked me to answer this question for him)? I’d have to say for sure I feel at least five years younger than I did on September 17 (probably at least 10 years younger than I felt on Sept 19th :-) We moved into our current house in July 2005 and I’m probably feeling as good as I did then, if not even better. It is surprising just how poorly I was feeling.

I am thankful to have discovered this heart defect and found a wonderful surgeon who could so skillfully correct the defect and put me not just back on my feet, but back on my feet much improved. I am thankful to all of you who sent your good thoughts and prayers our way as we went through everything. I am thankful to my mom and dad who travelled to Stanford with us and who made sure Deb had a support system while I was down and out. And, of course, my wife Deb is simply the best -- she kept all of you up to date on what I was going through, she kept me positive and sane, and she handled much of our household load for the eight weeks when I couldn’t lift anything, drive, or work. She made recovery as pleasant an experience as it possibly could have been. There is a special place in heaven, and my heart for my wonderful wife!

Thank you everyone!

Jon

Christmas 2009

I've posted several photos from the Christmas 2009 celebration with our children and grandchildren. We had a marvelous time. Deb outdid herself on everything and she made sure we all had just a wonderful day, especially me! We all received many gifts, not the least of which was the time we spent together enjoying each other's company.

Here is a link to the photos on my Facebook page: Christmas 2009

Hope everyone had a wonderful Christmas 2009 and a Happy New Year 2010!

Jon