Our Travelogue Through Life: Jon & Deb Spence

A "Heartfelt" Poem by Deb for Jon

2011-09-18T09:29:00.005-05:00

Second Chances and Restarts

For Jon

by Deb Spence

Two years ago we were told, if not surgery, Jon wouldn't have the chance to grow old.

So we headed to California to give Stanford a try.

We were scared shitless, Dad, Mom, and I.

Dr. Miller was our angel in white; it was comforting talking to him that last night.

Nothing from Guidant per Jon's request. Doc put in a Carbomedics Sorin, For Jon it was the best.

Huddled together just us three, we hung out in the waiting room, Dad, Mom, and me.

Waiting for the nurse to come and give us news, we hung on every word, sometimes worried and sometimes confused.

When Jon went off the heart lung machine, Dad knew that Jon had been through the toughest thing.

His chest was open and he needed a shock or two, but he came through as always like good Jon's do.

It's been two years since this fateful day, Jon is home and healthy, eating whatever he wants, come what may!

Jon, my love I cherish you, for you are my heart and that is for true. Please love and care for that heart, cuz going forward we don't want another restart!

Two year "anniversary"

2011-09-18T07:51:00.004-05:00

Two years ago today, at just about this time of the day, I was on my way to surgery to have my heart's aortic valve and a good piece of my aorta replaced and repaired. I'm doing very well physically and mentally (some might argue that point :-) today due in no small part to the efforts of a very dedicated and skilled surgical team under the direction of Dr. D. Craig Miller from the Stanford School of Medicine at Stanford University Hospital in Palo Alto, California. I spent 10 hours that day in surgery. During about 4 of those hours Medtronic equipment and tubing circulated and oxygenated my blood while my heart was stopped for the repair procedure. I have a nice zipper scar down the center of my chest. Surgery, recovery, and recuperation were all routine and without complication. This year my cardiologist said he doesn't need to see me for two years! I take the anti-coagulant coumadin every day (for life) to reduce the chance of blood clots forming on the valve. My coumadin dose has been stable since shortly after surgery with no complications or side-effects to date.

You can read all about what happened two years ago in this blog if you care to. I refreshed my memory of the events as Deb so carefully recorded them and I am very happy to be here looking back instead of where I was two years ago! This is one memory I don't ever want to repeat!

I have been extremely thankful throughout this entire chapter of my life. I am thankful this congenital problem was found before it made my heart very sick. Dr. Miller told my family when we met with him before surgery that, without correction, the chances were not good that I could have survived more than two years. I'm beyond that point now, so I've got a new lease on life today! I am thankful to have a connection with Dr. Stephen Oesterle, Medtronic's Senior VP of Medicine and Technology, who connected me with Dr. Miller. I am thankful to have the support of my wonderful family, friends, and colleagues. Most of all, I am very thankful to have my wonderful partner and wife, Deb, watching my back all the way. All in all, I'm a very thankful (and lucky) guy -- no doubt about it!

Dad, mom, Deb, and I spent Friday night celebrating. We started this journey together two years ago and it was fitting that we celebrate together all we've been through then and since. I thank all three of them for the support, care, and love they have shown me during this side-trip. Deb even wrote me a poem to mark the occasion. I have posted it separately here - it choked me up Friday night at dinner when she read it to us. She continues to amaze me every day!

Thanks to everyone who supported mom, dad, Deb, and I during this roller coaster detour through our lives. We felt your presence in so many ways and it truly helped us all get through it with smiles, laughs, and comfort!

Jon

One year "anniversary"

2010-09-17T20:56:00.003-05:00

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!

2010-06-06T22:24:00.003-05:00

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

2010-06-05T18:24:00.003-05:00

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

2010-06-04T21:48:00.002-05:00

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

2010-06-03T18:50:00.004-05:00

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

2010-06-02T15:53:00.002-05:00

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 :-(

2010-06-01T19:03:00.004-05:00

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

2010-03-17T18:11:00.005-05:00

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

2010-01-03T20:58:00.005-06:00

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

Merry Christmas from the Spence's!

2009-12-23T15:50:00.002-06:00

As we get older and older the years seem to speed by faster and faster; 2009 is no exception. This year has been a year of strengthening for Jon and me. This past Summer Jon found that he was born with a birth defect in his heart. His aortic valve which when normal is tricuspid (3 flaps), Jon's was bicuspid, only having 2 flaps and they were extremely calcified. So in September we (along with Jon's parents), flew to Stanford University in Palo Alto California and Jon underwent open heart surgery. Jon's recovery has gone extremely well. He does tend to get tired more easily but that in time should pass. I think for the rest of my life I will be watchful over Jon as he is my life and sole mate. I don't ever think I can thank Jon's parents for coming California to help Jon and I through this wrenching time in our lives. On the day of surgery, Mom, Dad and I sat together in the ICU waiting room. I drew strength from the both of them and cannot imagine what it would have been like if they had not been there. I also want to mention how touched are to have the family, friends, co-workers and neighbors we have. During Jon's surgery and recovery, everyone in our neighborhood and all of our friends, family and co-workers reached out in one way or another to help. We both feel very blessed.

We are bursting at the seams with pride as another grandson has joined the family. Henry Heiken was born 2:01 am on June 26, 2009 to his proud mom and dad, Jessi and Luke. I've said it before and I will say it again, grandkids are the best gig in the world. Henry has this incredible full body smile and when he smiles at me I am overjoyed. Jacob continues to bring joy to our lives as well and seems to be growing like a weed and smarter every time we see him. A few weeks ago Jon and I, Jessi, Luke and Henry, and Nikki and Jacob went to the annual Medtronic Children's Christmas party. What a great day it was. So much fun and we were so proud when familiar co-workers passed by to point out to them that these two fine boys were our grandsons. I really do believe that we have the cutest and smartest grandsons in the world.

Out yearly home improvement project this year was to put in a bar in the game room. A shout out to Kelly for her hand in this endeavor. In April we broke in the bar with a bar christening. What a great time was had by all. The bar is something Jon and I both wanted and we think that it adds some fun to our home. We love to have our friends over for cocktails and to chat.

This past year we lost our dear pet Sophie. She was a beautiful cat with a sweet disposition. She is dearly missed. We have added a new member to our family and have adopted Nikki and Jacob's cat Dakota. We love him very much; he is all male and brings a lot of love and laughter to our home.

Mom and Dad went back to Marco Island Florida in October and will be coming back to Minnesota in May. I find it very strange that the time between May and October goes so quickly and the time between October to May goes so slowly. We both miss Mom and Dad when they are in Florida. This year however, Jon and I will be visiting them in January which will make the time till May much shorter this year.

I have spent many, many hours this year working on canning and crafting and managed to make all of our christmas gifts for our family this year. Jon himself has taken up a new hobby or at least he's giving it a try. Last week he took his first electric guitar lesson. I always knew Jon was a rocker but I didn't know he wanted to learn how to play until a long car ride several months ago to Iowa. Searching my mind for something to say and keep a conversation going during the long ride, I asked Jon if he could do any profession in the world what would it be. He said, he wanted to be a guitar player in a rock and roll band. So, he's taking lessons. Good for him. Never stop learning and using your brain muscle.

As I draw this letter to a close, I am in my craft room looking out on the lake where a snowmobile is racing across the lake. I can't help be in wonder as I know that in about 3 1/2 months we will be putting the pontoon back in the water.

In closing, Jon and I would like to wish you all a very Merry Christmas and a happy and healthy New Year!

Jon and Deb Spence

Back to Work in the Ninth Week of Recovery

2009-11-22T11:58:00.007-06:00

I started back to work on Monday of this week for the first time since Sep 14. I'm working six hour days until Thanksgiving, and then I'll start full time work again on Nov 30. I worked Mon-Thu this week, took Friday as a vacation day, and felt pretty good all week. However, as the week wore on, I wore down a bit and by Thursday afternoon I was feeling the burn. Guess I'm not quite back to full speed yet, but nobody (except maybe me :-) expected me to be.

It was sure good to see old friends I haven't seen in so long and to reconnect with colleagues again. I'm slowly catching up with where my work team has gone since I left. Several changes and many new plans to absorb. I feel like I'm starting to get the hang of things again, but a lot has happened in the two months I've been on the sidelines.

I've fallen off the wagon a bit with my walking, but I got back on track with a 45 minute walk this morning. It felt good to be walking again with some of my aches and pains healed up.

Yesterday was a rough day for me. For some reason I woke up with a nasty pain in my back and my left arm. Don't know if I slept on my side wrong or what, but I was feeling pretty crappy. Spent some time on the heating pad and by mid-afternoon the pain was pretty much gone. Since I can't take aspirin or ibuprofen any more, I've had to find new and creative ways to deal with aches and pains. Tylenol has never been an effective pain reliever for me, so I can't really count on that for much. After the pain was gone, I was feeling pretty tired so I spent the rest of the day horizontal on the couch watching college football.

Deb made up a dinner for a friend of ours from the lake who had surgery this week. We delivered it to Charlie and his wife at around dinner time. Charlie looks like he is doing pretty well, though he and I both recognize that feel of being "lost" during our recovery. We were his third group of visitors for the day, so we didn't stay long, but we are glad to see him doing well.

I wanted to do some Christmas decorating and maybe even get the monster Christmas tree up in the great room this weekend because the weather was so nice. However, didn't turn out to be a good idea, so I'll have to do it later when I'm feeling up to it a bit more.

I did get out for one event this weekend. Deb and I and Matt and Theresa P. had planned to attend a meat raffle at the Stacy Bar the week I started back to work, so we lived up to our plan this week. We were joined by our friend John E. and we all had a good time. Matt and Theresa won three times, and Deb and I won twice. Before we left, Gene H. from work stopped by and we found out he lives near Stacy, so we consider him one of our neighbors as well. We plan to all get together and do this again soon. On the way home, we stopped at Dave's and Barb's house to say hi and visit for a short time. After that it was home, some supper, and then to bed.

Looking forward to the short work week ahead and then Thanksgiving. We are having our Thanksgiving with our daughters and their families on Saturday. Looking forward to the full house, playing with grandsons, and the good food everyone is bringing!

Working to return to full speed.

Jon

Eighth Week of Recovery

2009-11-12T11:58:00.008-06:00

This eighth week since surgery marks my last one away from work! On Monday, Nov. 16 I am returning to work. My doctor cleared me to return with no restrictions or limitations. I will be easing back into the swing of things with shortened work days until the Thanksgiving holiday. This will be my next big transition in returning to 100%. My new 100% should be well above my old pre-surgery 100%. So far, I feel like I've past that old high water mark, but we'll see how it goes once workdays are back in the mix.

I finally finished writing all my thank you cards. Now I just have to distribute them. Many will be coming to work with me next week, some go to our neighbors, and some need stamps. It feels good to have this job behind me!

I've continued my walking and my doctor has let me know that just because I'm back at work is no excuse to give up on the walking and healthy diet habits. Looks like I'll have to dust off the old elliptical machine for those bone chilling winter days ahead!

My blood clotting ratio (INR) is holding steady at 2.3, which is within my acceptable range, so they've moved my next check out a full month and my warfarin dosage remains the same at 8 mg per day.

Deb and I made an unplanned trip to my old home town in Iowa this past Tuesday and Wednesday to attend a funeral. My dear friends from high school (and two of Deb's new dear friends), Brian and Claudia, lost Claudia's mom to brain cancer last week. We went down to lend whatever support we could and to help them mourn and celebrate Norma's wonderful life. We were glad we were able to be there for them! As a nice side benefit, Deb and I were able to catch up a bit with another of my dear friends from high school, Kurt. He had some great stories for us about his sons and their journeys through life -- it was great to connect again even if for just a short time. The trip involved 8 hrs of driving in just over one full day and while we were tired last night when we got back, we both survived the trip. I feel like I passed another hurdle toward full health. I drove both ways and experienced no ill effects from it.

Next update should be with some work experience under my belt. We shall see how that transition goes!

Jon

Seventh Week of Recovery

2009-11-08T14:47:00.004-06:00

This seventh week of recovery since my surgery has been pretty uneventful. I've stepped up my daily walks to 45 minutes for the first walk of the day and then 25 minutes for a second walk when I can get it in. I've continued to walk at a pretty brisk pace and I've started tracking my heart rate during the walk. I've been maintaining about a 110-120 beats per minute rate during my walks. According to what I've read, for cardiac rehabilitation I should be keeping my heart rate between 100 and 117, so I'm operating in the right range. I've had no real issues with this level of effort (except for the usual aches and pains of a 53 year old couch potato :-).

We did get some bad news this week. We just found out that my best friend from high school lost his mother-in-law to cancer. I went to high school and junior high with my best friend and his wife and we've stayed in contact throughout our lives after high school. We will be traveling back to my old hometown in Iowa for the funeral this week. Deb and I will be leaving Tuesday afternoon and returning Wednesday evening. We are extremely sad for Brian and Claudia and we really hope that we can help them some little bit just by being there for them.

This trip to Iowa should be a pretty good test of my endurance! I'm going to share the driving duties on this trip, but don't expect any complications. I'll be rescheduling my doctor appointment to sometime just after we get back from Iowa so that my doctor and I can factor my level of fatigue from this trip into our decision about my coming back to work on Nov. 16. I still feel like I'm on track and ready to start with somewhat shortened days to get back in the swing of things. We will have to see what my doctor thinks about that idea.

I also have another checkup on my coumadin and anti-coagulation levels this week. I will be moving my anti-coag appointment to sometime before we leave for Iowa so that I can adjust my prescription before we travel if necessary.

Saturday this weekend was another busy day. I accomplished several tasks around the house that need to get done before winter. Our youngest daughter, Nikki, and our oldest grandson, Jacob, came to visit on Saturday. Jacob helped me with some of my tasks and he also helped grandma pick apples at the neighbors house. He even chowed down on a couple of the apples he picked! We watched the Alvin and the Chipmunks DVD and we played some. Then grandma and grandpa needed to have some downtime so we could rest up for an evening of fun with friends. We met at our house and then went to dinner in Forest Lake and then back to our house. We had good conversation with good company. I was pretty tired at the end of Saturday, but it was a very good day in every regard!

I've failed in my efforts to catch up on my thank yous, so this next week will require me to focus on this task. I know I can get this done - wish me luck :-)

This next week will see me preparing myself mentally to get back to work. I'm looking forward to getting back in the swing of things, but this is the longest I've been out of work since I was about 16 years old. I'm just not sure how rusty I'm going to feel when I start back. I have a feeling next weekend will be a pretty quiet weekend for me as I pre-charge by batteries.

Last week away from work (probably) coming up!

Jon

Deb's Halloween Costume

2009-11-03T09:32:00.003-06:00

Here are some photos of Deb's Halloween costume. She put this together this year for a contest at Grand Casino in Hinkley. She didn't win a prize, but I think she should have!

Hope everyone had a Happy Halloween!

Jon

Sixth Week of Recovery

2009-11-03T06:26:00.005-06:00

Wow, six weeks since surgery already! I can't believe how fast the time has passed and I'm very happy for how uneventfully it has passed -- I couldn't have asked for a less stressful recovery.

This week I resolved my issues with disability leave and salary continuation. I am now cleared to be out of work until Nov. 29. Based on the way I feel and how well I'm recovering, my current plan is to return to work on Nov. 16 if I am cleared by my doctor next week. I don't expect any issues with getting clearance, but I won't know until I meet with him. I plan to see him on Wednesday, Nov 11 if he is available. I expect to start back for some short days (6 hours) and for only Mon-Thu the first week. The next week is Thanksgiving week, so only a 3 day week there. Then back to full time, full week the week of Nov 30. That is the plan at this point.

I have maintained at least one 30 minute walk a day for most days this past week. The weather was pretty nasty one day, so I only managed one 20 minute walk between downpours that day, and I believe I missed walking completely one day. My walks are pretty brisk and it is nice to get out for some fresh air every day. My endurance seems to be coming back pretty well, but I still need some "breaks" during the day to gather my steam back up.

I made very little progress on my thank you notes this past week, but I did get a couple done. I'll have to put some focus on this soon as I run out of time to get it done.

Deb and I had a very "full" weekend. Friday, Deb attended a Halloween costume contest at Grand Casino in Hinkley. She spent a lot of time on her costume and it was great. She went as a flapper from the 1920s. She was all decked out in purple from her head to her toes. She didn't win, but she had a fun time and she was happy with her costume. On Saturday, we had our friends Dave and Barb over during trick-or-treat time. After that, we all went out for dinner -- my first time out for dinner in quite a while. On Sunday we had a visit from my oldest daughter, Jessica, and our newest grandson, "little" Henry. Henry is only four months old, but he is the size of a sixth month old (or older). He is one cute kid and even though he seems to be working on his first tooth, he was in pretty good spirits and he sure helped my spirits as well! Then we were invited to our neighbor, Mary Joe's, house for the Vikings-Packers game. We had a pot luck there and enjoyed the company of our neighbors and the success of the Vikings. Deb and I stayed until just after half-time and then it was time for me to calm down and take it easy for the rest of the game. We left at just about the time the Pack started to get the momentum back, but once we arrived back at home I was eerily calm about the Vikings chances to get everything back under control and it played out that way. There is just something calming about having Brett Favre on your side of the ball!

That's about it for this week. The upcoming week will be more of the same -- walking, thank yous, stretching myself to gain more endurance, and starting to catch up on work in preparation for getting back in the flow of things.

Counting down the days until I get back to work,

Jon

Fifth Week of Recovery

2009-10-25T18:08:00.004-05:00

Last week I said I had some goals for this week. They were "catch up on my thank you notes, call Stanford to discuss my return to work plan, work up to three walks per day, and to continue to recover as best I can. I'm also trying very hard to avoid the H1N1 flu bug and hopefully I can get a shot from my clinic as soon as they have the virus injections on hand."

I made some progress on my thank you notes. Still have a long list to work through, which I will continue this week.

I did call Stanford and the Hartford to discuss my return to work plan and to try to confirm Hartford's understanding of my leave time and disability salary continuation. I understand that Stanford submits everyone who has the sort of surgery I had for twelve weeks of time to recover, but the Hartford somehow had me shown for only six. Looks like we have some work to do and Stanford is working with the Hartford to get me an extension. I will not be ready to return to work one week from tomorrow (Monday, Nov 2). I have been recovering well and there are no major obstacles in the way other than building my endurance back up, which is coming along well. I will be getting this resolved this coming week and make sure all the "paperwork" is in order so I can continue to get better.

I did work up to three 20-minute walks this week and then I shifted to one 30-minute walk for a couple of days when the weather cooperated and then today I made it to two 30-minute walks. As long as the weather cooperates, I expect to stay at this level for a while.

I am continuing to recover pretty well. No real setback days this week. Sleeping is getting a bit better, but is still not as sound as I'd like. Hopefully increased activity this week will help that. My anti-coagulation check went well this week. At 8 mg Warfarin per day, I reached an INR level of 2.1 (my goal is 1.5 - 2.5). One more weekly checkup at 8 mg and if we are in the right range we will stay there and they will bump me out to a check every two weeks instead of every week. I'm starting to spend more time reading again and other diversions that aren't on the television. Daytime TV is just bad, and watching news channels all day is really depressing me :-) My appetite continues to improve and my digestive system seems to be returning to normal. I still have a ways to go, but I'm snacking more during the day, so it looks like things are definitely getting better.

So far I've managed to avoid the H1N1 virus and I am trying very hard to continue avoiding it. No virus shot for me, so I'll just stay away from people as much as I can.

My youngest daughter and her son, my oldest grandson, came to visit us yesterday. Jacob simply wore me out, though we all had a lot of fun playing pirates and swords and reading books and decorating a halloween gingerbread house and just generally doing "papa", Grandma, and Jacob stuff. Even though it wore me out, I wouldn't have had the day go any other way -- what great therapy it was!

So for this week, I need to continue to work on thank you notes, my return to work plan with Stanford and the Hartford, my walking, my reading, and my continued recovery by raising my activity level and endurance. Surprisingly the days are passing by quickly and my daily to do lists are getting longer and more difficult.

Looking forward to another week of good progress,

Jon

Fourth Week of Recovery

2009-10-18T19:22:00.005-05:00

Not much new to report this week, except more good progress and no significant setbacks.

I'm up to two 20 minute walks per day now, weather permitting (and sometimes this week NOT!). Saturday and Sunday allowed me to get two good walks in each day. My goal this week is to reach three 20 minute walks per day at least once or twice.

I continue to work with my local anti-coagulation clinic to titrate my warfarin levels. My INR (the ratio of my clotting time to an average person's) is supposed to be in the range of 1.5 - 2.5. Last week I dropped to 1.8 and this week it dropped further to 1.6 in spite of an uplift in dosage. The pharmacist says this is normal as activity levels go up and as I've stopped taking pain medicine. This week we up it to 8 mg per day and we will check it again on Wednesday. Based on the pharmacist's calculation, moving up to 8 mg per day should boost my INR by about 1 point, but my activity level continues to climb so I expect to be somewhere over 2.0 at my next check. Diet is also a potential contributor.

Speaking of diet, my appetite does seem to be coming back. I've also started taking Activia and other yogurts with bifidus regularus to see if I can re-prime my digestive system to start working better and to reduce constipation. So far I think it is working and that part of my recovery seems to be improving well. My food intake is up a bit, but my weight is still down a bit more. I'm now registering below 195 pounds some days.

I'm still not sleeping extremely soundly, but I am getting adequate sleep for my activity level it seems. I've got several books to get through, and some puzzle books, and some DVDs to watch, so I've got plenty to distract me. This week I should start putting a dent in the pile. I've also got a raft of thank yous to write and I've been very poor about getting this done.

Today, our good friends on the lake, Dave Karsky and his son Kevin, came by to pull our dock out of the lake. We managed to get enough pulling power with my SUV and once we got everything arranged and tow straps in place, we had it out of the water in about 10 minutes. It took 30-45 minutes of preparation, but it is very nice to have this fall chore out of the way. I think we can handle any kind of weather mother nature throws at us now!

We had several visits from friends and coworkers this week and another of our neighbors delivered lasagna dinner to us on Thursday evening. On a down note, we had our last dinner out at the Log Cabin restaurant with Mom and Dad. They leave on Tuesday morning to drive back to their winter home on Marco Island in Florida. We will miss having them so close by -- they have been a great source of comfort and help to both Deb and I during this journey. We wish them a safe and uneventful trip home. We plan to visit them in January or February and we look forward to their return in the spring! I passed my cane on to my Mom who is having some knee problems that she will have looked at in Florida. I'm doing well enough that I no longer need a cane to get around.

My goals this week are to catch up on my thank you notes, call Stanford to discuss my return to work plan, work up to three walks per day, and to continue to recover as best I can. I'm also trying very hard to avoid the H1N1 flu bug and hopefully I can get a shot from my clinic as soon as they have the virus injections on hand.

The cats are getting very used to having me around all the time and I think I'm becoming one of their favorite napping spots during the afternoons :-)

The recovery continues,

Jon

The people I met in California

2009-10-15T20:35:00.002-05:00

As you all know, I haven’t updated the blog since we left California. Sorry about that. I’ve been consumed with taking care of Jon and returning to work. I have been meaning to blog about the people I met during our time in California, so here goes.

I spent no time thinking about what I would be doing, where I would be waiting and what I would encounter while Jon was in the OR. My first impression walking in the ICU waiting room was surreal. As I mentioned earlier, there were 3 groups of people sleeping when I arrived. In retrospect I find it interesting that when a group of strangers are under emotional stress they form a bond with others who are in the same stressful state. I met 6 different groups of people during those first few days in the ICU waiting room. If any of them mentioned their names, I don’t remember. However, I do remember their stories and who and what brought them to the ICU.

The first person I met was waiting for her aunt who had hip replacement surgery. She had been in the ICU waiting room for several days because her aunt’s hip wouldn’t stop bleeding after surgery. Her aunt who was elderly had 16 units of blood transfused into her system since entering the ICU. The woman was very worried about her aunt and she told me she considered her aunt to be more of a mother. She had lost her mother early in life and her aunt raised her. The woman was blond and about my age. She lived in Napa Valley and had just retired from their family printing business. Their business was designing and printing wine bottle labels for Napa Valley vineyards. I guess I never thought about wine bottle labeling as a business, I just like to drink the wine behind the label. I thought what very cool and interesting business to be in and wished I had asked more questions.

The woman’s aunt was moved to a regular room the day after Jon’s surgery. I saw her once more in the cafeteria. She said that her aunt was doing very well and would be leaving the hospital in a few days. The woman was happy and as we spoke she had a bright smile on her face. As the women’s stress was diminishing I could see that she was quite an attractive women, she kind of glowed from the inside.

I'll post again about the others I met soon (I promise).

deb

Third Week of Recovery

2009-10-12T18:02:00.003-05:00

On Friday, Oct 9, I completed my third week of recovery since surgery. I had an up and down week and struggled with some abdominal discomfort that appears to have been constipation related to the pain meds and other medications I'm currently on.

I went to the doctor on Thursday and checked in on a bunch of questions I had about various things related to my recovery. I received advice about managing my constipation better. I found out that as soon as the H1N1 virus shot is available I need to get in to get it. I found out that I should be trying to stop taking my pain meds if I could tolerate it. Turns out I have been able to tolerate it pretty well and I haven't taken any since I went to bed on Saturday evening! Some minor discomfort in the area of the breast bone and incision and some back spasms, but essentially no pain to speak of. I wanted to check on my dosage of beta blockers for blood pressure because it seems my blood pressure is often pretty low. I found out that we really want to keep my blood pressure as low as I can stand, so I'm staying with the current dosage for now.

I've been working hard on walking and my breathing exercises. The weather has been pretty crappy for walking, but today I walked around the "block" that our house is on and it took my 20 minutes (in the snow and all :-). That is the longest continuous walk I've taken so far. I was moving right along and had no issues with balance or fatigue. I'm just about to give up the cane and get back on just my own two feet!

My appetite is still pretty weak and my stomach is pretty messed up with all the drugs I've been on as well as just recovering from surgery I imagine. My weight is down about 15 lbs now and seems to have stabilized. I haven't weighed this much in many, many years. I wouldn't recommend this as a diet plan, but I can tell you that the unintended consequence is that it is one.

The cats are very happy that I am home all day and they love coming by and "snuggling" with me as I watch TV or snooze during the day. Daytime TV is pretty bad and I'm not yet reading real strong, so the days can be pretty long some times. I've got one book I'm working through and others on tap, so I have no shortage of reading material to get through.

Deb has been working early days and taking an hour of vacation each day so she can get home in time to spend the afternoon with me and make me some lunch. It is nice to have her around when I'm feeling crappy and when I'm feeling good. She has been a real trooper -- doing all the household chores, hers and mine. She's pretty worn out most of the time! She even hosted a couple of get togethers this weekend of friends, relatives, and well wishers. I don't know how she does it all!

I'm not sure how much recovery I have left. By the current date that the FMLA folks have I have three weeks left, but I need to check in with the folks in California to see what they have to say and to figure out how we are going to make the determination of when I can go back. It seems like things are progressing extremely well, in spite of my minor setbacks, but what do I know -- I'm just the patient not the doctor! I'll check in with them this week.

I had great intentions of coming to the Medtronic Mounds View campus on Friday for a short visit to the last day of the S&T conference and to say hi to my colleagues, but I thought better of it. I decided it was best to forgo that visit and just stay away from all the people and potential sources of illness I might pick up. I need to keep my recovery on track so I can get back to work full time as soon as possible.

Thanks to everyone for everything. I'm running behind on my thank you cards, but I have started working on them. Hopefully I'll catch up this week.

Continuing to recover at home.

Jon

A Recovery Weekend

2009-10-04T15:42:00.005-05:00

I had a nice first weekend of recovery at home. Still feeling very good and everything seems to be working properly and recovery seems to be still ahead of schedule.

On Friday, we had three visitors. Jeff Rouleau stopped by to say hi and he brought us a nice plant with a fall theme. Jeff replaced me as chair of the Science & Technology conference at Medtronic this year due to my unexpected absence. Jeff thought he was going to be co-chair this year and learn the process of leading and programming the conference. Surprise, he finds himself completing the work I started so many months ago, and still looking ahead to chairing next year's conference! Jeff tells me that things are coming together very well with a few loose ends to tie up. We discussed the chances of me attending the conference for a short visit. Assuming I'm feeling well enough on Friday of this week, I will try to do just that. While I'm at Mounds View, I'll stop by to say hi to some other folks as well. Don't expect to be able to visit for too long, but it will be nice to see some folks I haven't seen in a while!

Also on Friday, Mohamed Kone and his wife stopped by to say hi. Mohamed brought us one of the Bellatore pizza's we really like. We had a very nice visit with both of them. Later on Friday, our good friends from the lake, Dave and Barb Karsky stopped by to reconnect with us. We have missed seeing them since we've been gone and it was good to share a drink and conversation with them (even if I can't drink myself :-)

On Saturday, my manager from Medtronic, Lori, stopped by to say hi and to drop off a card signed by my co-workers and some money my work group collected for us to use on my recovery. Lori filled me in one where my work team was headed and how things were going and I let her know how well things were going for me. We talked about my surgery and our time in California. Both of us want me to get back just as soon as I'm really ready to do so!

Also on Saturday, my sister Kelly and her partner Molly stopped by to catch up with us. Mom and Dad stopped by to visit at the same time. We had a nice visit and it gave us a chance to thank Kelly and Molly for the wonderful basket of fruit they sent us. Saturday ended on a good, and tiring note.

And, if that wasn't enough, Deb and I celebrated our 11th wedding anniversary on Saturday! We decided to shift our "celebration" of the day to some time after I'm back to work and really up and around again.

Sunday has been a day just for Deb and I, as Deb prepares to start back to work full-time tomorrow. She has been busy making apple butter, taking care of chores around the house, and just generally wearing herself out. She's catching a quick nap right now and we will order dinner out later. I'm watching football and the Twins and generally taking it easy. I've taken two walks today already and plan to take one more before dark. My strength is coming back and other than my low blood pressure because of the dose of beta-blockers they have me on, I'm feeling very good for someone just over two weeks out of open heart surgery!

And the recovery goes on!

Jon

A Visit With the Family

2009-10-01T19:16:00.006-05:00

My daughters, their families, and their grandparents came to visit us this afternoon. Deb and I really enjoyed their visit. Our grandsons were in fine form today.

Jacob (3 1/2 yrs) brought a collection of his "guys" to play with and then proceeded to get out a lot of his toys we have here for him. He had to make sure "papa" showed everyone his scar, just in case anyone didn't know he'd had surgery. He thought it was a pretty good looking scar :-) He was an active boy and gave us lots of chuckles during the afternoon as his imagination worked for all of us to see! Grandma and Jacob played lots of games and Jacob kept grandma on her toes all afternoon.

Henry (3 months) was a cutie pie, as always. He became the pass around pack for most of the afternoon. At one point between feedings he fell asleep in grandpa's arms while I rocked him in the chair. I'm convinced the way he was laying that he could hear grandpa's new "ticker" and found it soothing and relaxing. He slept for a good 1/2 hour or so -- it was a special time for grandpa.

Grandma baked chocolate chip cookies for everyone and set up milks all around for us -- yum, yum!

GG (great grandma) and great grandpa just marvel at Jacob and Henry and just have a lot of fun with them when they are around. Jacob entertains and Henry charms.

It was good for Deb and I to see Nikki, Jessi, and Luke again, on this side of our adventure. We are all relieved to be back together under nearly normal conditions again. No more big adventures anytime soon, we hope!

Deb and I are both tired from our visit, but we wouldn't have it any other way. It did our hearts good to be back in the company of family again!

We received a cute card and gift from the Medtronic CRDM Core Product Development VP and his staff. We also received dinner last night and tonight from my System Engineering group at Medtronic. So many blessings we have -- it is beyond humbling and very therapeutic!

Jon

Pretty Good Day

2009-09-30T17:10:00.003-05:00

We had a pretty good day today. My abdominal pain seems to be back under control with more careful control of the timing between pain meds doses. I'm taking 1/2 doses every 4-5 hours and that seems to have put everything under better control. I'm also doing better with fluids and exercise. I got a 15 minute walk outdoors in this afternoon -- what a fantastic day! Hope to take another stroll before sunset.

Saw my local doctor this morning and got all set up with the anti-coagulation clinic to monitor my blood thinner dosage.

Found out it was our neighbors, Wally and Carole Ostlie who put the banner up on our garage door -- very nice to come home to!

Today we received a big batch of Chicken Teriyaki from the Good Earth from my work group, and a big "bouquet" of fruit from Kelly and Molly. Very nice!

Received and answered several nice e-mails.

All in all, a pretty good day I'd say!

Jon

Home, Sweet, Home!

2009-09-29T20:43:00.003-05:00

We just arrived safe and sound in our home! We stopped on the way home from the airport to have dinner with Mom and Dad at the Log Cabin. Flight was uneventful and smooth and ahead of schedule.

Discomfort levels have been rising the last two days, not sure why. Have a doctors appt. with my family practice doc tomorrow morning, so we will talk about it and check it out then. Could be that the pain medicine effects are wearing off, or maybe the healing process is reaching a "normal" point. Discomfort is not with the incision or heart related, but rather abdominal and feels like tight muscles. Maybe I need to use some ice and/or heat to keep things loose (and maybe that last touchdown on Sunday cost me more than I realized :-)

Libby and Emma are very happy to see us. Dakota comes home tomorrow from his "extra" care place.

We had a great, big banner on our garage door when we arrived home welcoming us back. We understand Kelly and Molly may have been behind this one, but we need to confirm. There was also a collection of fruit and other food products in the kitchen and refrigerator as well as some nice flowers. We aren't sure who to thank for these, but we will find out.

Also, Wally and Carol Ostlie left us a nice plant to help brighten the place up.

It is truly a blessing to once again be at home!

Thanks everyone for getting us this far down the road -- you are all the very best friends and family we could have ever hoped to have!

Jon

Good To Go!

2009-09-28T20:14:00.005-05:00

Deb and I just got back from the medical center and Dr. Miller and his team have given us the green light to go home. We have everything set for tomorrow and should be back on the ground in Minnesota around 6:00 PM tomorrow evening! Neither of us can wait. California is beautiful and everyone here has been just fantastic, but we need to get home. Mom and Dad are picking us up at the airport.

I have an appointment with my family doctor right away Wednesday morning to transfer care responsibility to him for the remainder of my recuperation. Return to work date was set today at 8 weeks from the date of surgery. This puts me back Nov 16 on a part time basis as tolerated. I'm looking forward to getting back, but I'm also looking forward to recuperating at home and letting my sternum heal up good and solid.

Dr. Miller told me to take it easy, and he knows that will be tough for me, because he said when they tried to cross-match my blood they found out my closest match was mule :-) Apparently someone has been talking out of school about me!

One big hurdle left to jump and them we settle into, hopefully, a bunch of small ones in friendly confines of home.

Thanks everyone -- can't wait to catch up with all of you in person at some point in time!

Jon

Vikings Win!

2009-09-27T19:53:00.002-05:00

OK, so I know I probably shouldn't have watched the game, and I admit it looked pretty much like a scripted Vikings debacle plenty of the game, but even when the Vikes gave the ball back late in the game I couldn't give up on them. Brett Favre was still in the game and Bernard Berrian had even started catching something once in a while. Of course, when that final touchdown happened I might have gotten a little excited, in spite of doctors orders not too :-) After that lunch and a little nap and then breathing exercises. Deb "practice packed" the suitcases just to make sure we could get everything home on Tuesday and it looks like we are good to go. Now we can relax a bit, keep up on the Colts game and look forward to Monday!

Way to go Vikes!

Jon

Good Morning...

2009-09-27T11:15:00.006-05:00

I'm delinquent in keeping up my end of the bargain on this blog. I may have a reason to be a bit tired, but that isn't really an excuse. I'm feeling very well today, even better than yesterday which I think has been my best day so far since the surgery. My vitals are rock solid, I've lost 12 pounds since I left the hospital loaded with water, and I'm sleeping pretty well. My appetite is definitely off, which explains the weight loss, but I'm getting 3 squares a day thanks to Deb's efforts. Hasn't she just been great through all this. I know I owe her a huge debt of gratitude for putting up with my crap as I recover, sometimes crabbily. She did a fantastic job with the blog while I was out of circulation and I will encourage her to keep posting her side of the story as we continue to move forward on this detour through life.

The one problem I still have, that is a known side effect of this surgery, is that my vision is extremely muddied right now. I don't know what the cause is, maybe heart-lung machine, maybe anesthesia, who knows (I'll look it up online later). No matter, I can't wait for this effect to fade so I can get back to reading at my normal glacial pace.

We are waiting to catch the Vikings-49ers game this morning and looking forward to a wonderful and relaxing Sunday in CA. Tomorrow we go see the surgeon for my wound check and to get our "walking papers" back to MN. I am really looking forward to getting back home and settling into the rest of this recovery. Not sure what setbacks may be facing us, but so far so very good! Tomorrow I should find out when my tentative "return to work" date is and we will work toward that. Conventional wisdom says 6-8 weeks minimum from date of surgery for the sternum bone to heal. That would put us somewhere in the Nov 2 - 16 timeframe for at least a part time return to work.

We are looking forward to catching up with Mom and Dad and thanking them profusely for their fantastic support of both of us during the first week of this journey. We are also looking forward to a visit from my daughters and their families. We have really missed them and we want to see our wonderful grandsons, even if it is just a short visit!

Have a great day everyone. I know I will never be able to thank you all enough for the good thoughts, prayers, and energy you've all sent our way and the help it has given us in getting through this!

Thanks,

Jon

Not for the Faint of Heart (Round 2)...

2009-09-25T18:51:00.003-05:00

Here is that better picture we promised, hot off the pixels :-)

Jon

Not for the Faint of Heart...

2009-09-25T15:13:00.002-05:00

Here is a cell phone quality, slightly blurred phone of my scar before I left the hospital. I think you will get the idea. We will get a better one today and send it out later.

Getting better and strong in CA outside the hospital walls!

Jon

Look out, Jon has busted out of the Big House!

2009-09-24T15:23:00.000-05:00

Hi Everyone! Just a quick note to let you all know that Jon is out of the hospital and has made it to the Stanford Guest House safe and sound. Overnight Jon was able to drop 2.2 pounds of water which made his doctors happy, so they let him out. We are both going to be a bit germaphobic until we get home and Jon will be wearing a mask when he goes out and when we are at the airport next Tuesday. We will also be using hand sanitizers often. Jon is feeling very good and I worry that he's going to try to overachieve at his recovery, thank goodness, I play the "Nurse Ratchet" roll extremely well! Jon's Mom and Dad are flying home today. Mom called when she got to the airport and warned us to get there way early as it was a traffic nightmare for them. I'll be sure to do that because we have to wait for the plane somewhere, might as well be at the airport and it will be less stressful on Jon. This afternoon I will be running to the grocery store to pickup food that fits into Jon's new "lower salt" diet and to pick up a bathroom scale (he has to closely monitor his weight because of fluid build up), and we need one of those pill case jobbers so it will be easier to keep track of Jon's meds. Now I'm going to warn you. In my next email I plan on sending a couple of pictures of Jon showing his chest. If you don't want to see the photo disregard the email from me with the subject "not for the faint of heart. hehehe, do you get the pun? deb

Missed it by that much :-)

2009-09-23T16:12:00.003-05:00

Well, I didn't actually get sprung from stir today :-( But, not to worry we aren't (yet) moving the return to Minnesota date. I have a bit too much fluid around the heart and in the lungs still today, so they are bumping up my Lasix dose to move the fluid out. We will reassess tomorrow morning with another echocardiogram and hopefully be back on schedule! We were idling the engines ready to go when the last minute wave off happened. We didn't come all this way to do this halfway or ignore our doctors recommendations, so we continue to do the "right" thing even if we don't want to!

Love everyone - starting to come back fully online!

Jon

Fifth Day - Second Update

2009-09-22T19:01:00.001-05:00

Greetings everyone! So here's the skinny on Jon. He will be released from the hospital tomorrow afternoon. We have his follow-up appointment with Dr. Miller on Monday at 3:00 pm. We will be flying home on Tuesday. How great is that!!!! Things have gone so well it makes me a little frightened. I think someone is looking out for Jon. Today has been very very busy. Jon's been up several times walking, he has had his CT scan (I was confused about that, he has his echocardiogram tomorrow, not today). We have met with a cardio rehab nurse and learned a bunch from her about what's good, what's not good, what he needs to start doing and what he needs to stop doing. One thing I know he will struggle with is stress as he is a chronic over achiever. We also met with a neutrtionionist (the heck with it, I can't spell!) and Jon will be on a "no salt added" diet for the next 6 weeks to 3 months. We also had a surprise visit today from Dr. Miller who stopped for a few minutes to chat with Jon. He is just the most amazing doctor I think I have ever met. He really cares about his patients and their wellbeing. We are so blessed to have been under his care, steady hand and engineering mind. Jon had the wires removed today as well. This was kind of cool. They leave in 2 wires that are placed under the first few layers of his heart and run them down through his skin coming out a little bit above and to the right of his belly button, they are called pacing wires, so that if Jon's heart needs a little electrical help, the wires are already there. Anyway, to get them out the nurse simply gives a little tug and pulls. It doesn't really hurt much just feels weird. They Jon has to lay in bed for 1 hour before getting up. He is just finished with his hour and I believe he and Dad are taking a little stroll along the hallways. By the way, Dr. Miller said that Jon's CT was "perfect"! Well, I better get going. Mom and Dad are going to drop me at the hotel. I need to pack everything up and be ready to move into the larger room tomorrow. Then I plan to call the airline and talk to them about changing our tickets to next Tuesday. It's going to cost us to change our return date but we don't care, we want to come HOME. As Jon said earlier today "I am so ready to be done with this". Then I will have to talk really sweet to the airline to ask that we get handicapped seating so Jon can stretch his legs out. It's not good for Jon to be cramped up right now and being 6' 3" in a regular airline seat, his knees are darn near in his arm pits. I'll write more later. Thanks to everyone. deb

Fifth Day - First Update

2009-09-22T11:23:00.001-05:00

Hello everyone! I wanted to pass along some crazy great news, Jon may not even have to wait till Thursday to break out of the big house! They may let him out tomorrow! I am overwhelmed with emotions going in every direction at once. I am so grateful to have such good family and friends and positive vibes coming from everyone. I cannot thank you all enough. Today Jon will be having another echocardiogram to better seen how his factory reconditioned heart is doing. Also, Jon is getting really bored which is a good sign too. I made arrangements last night to move to a bigger room tomorrow, just in time it seems. I will write more later. deb

Forth Day - Third Update

2009-09-21T23:12:00.002-05:00

Hello All!

Jon's chest tube was removed today at 1:30. The tech told Jon it would feel like someone kicked him in the gut. Jon didn't feel anything. In fact, Jon's pain is so minimal he commented "Shouldn't I be having more pain?" Like he thought something was wrong. The nurse said that some people are just very lucky and don't have a lot of pain from surgery. Dang surprising when you think of it but hey, as surprises go, we'll take it! Jon's blood pressure at 2:00 today was 105/70, pretty good I'd say. Jon is sporting a lovely Holter monitor but other than that he has nothing connected to him.

Jon's Anasthesiologist (Dr. Mora), stopped by for a visit today. Jon calls her the "Sand Man". He had wanted to speak with her before the surgery but was put under before that could happen. It was very nice of her to take the time from her schedule to visit Jon. She walked in and said "You may not remember me Mr. Spence but I will never forget you". They chatted for a few minutes about how Jon was doing and she talked a few minutes with Mom and left. How nice was that!

I washed Jon's hair today with this funky weird cap thing. Oh well, it worked and Jon doesn't feel so grungy anymore. He'll get to have a proper shower tomorrow.

He sat up this evening to watch Monday night football, some things just don't change. Jon/football.

Jon got to speak to Jessi and Nikki tonight. He was so happy to be able to do that. Just to hear their voices is so healing for him.

Want to hear some great news?

Jon could be breaking out of the hospital either this Thursday or Friday! Can I hear a big Whooooo Hoooooo!

And finally, here's a few words from Jon:

"I'm doing good and feeling all the positive energy and I'm so happy to have lots of people on the journey with me."

More tomorrow.

deb

Forth Day - Second Update

2009-09-21T15:47:00.000-05:00

Greetings from California! Today has been pretty eventful so far. Jon's catheter has been removed already and his chest tube will be removed in a little while. When I asked him how he felt about his catheter being removed he said "ouch". Don't think having a catheter removed is a fun experience. Jon's lungs are clear and he's been doing his breathing exercises. He ate all of his breakfast which consisted of scrambled eggs, coffee and juice. He is on 25mg of Lassix (sp?), a baby aspirin and atenenal and his nitro patch has been removed. Jon has gone for x-rays and has been up for a little walk. He is having some trouble with dizziness. They are switching his pain medication in hopes that it will ease his dizzy head a bit. The bandage covering his incision has been removed and he is going to be sporting one dozy of a scar but it's not really so bad. I looked at it and wasn't grossed out. Jon's Mom and Dad stopped by this morning for a visit and then they gave me a lift to Sears as I needed to pick up something. Then we went back to the hospital and had a quick lunch. Mom and Dad decided to head back to the hotel for a nap and I'll hang out here for the rest of the day. The folks will be back later. For lunch today Jon has had apple sauce and ice cream and I'm hoping he'll eat a few grapes later on. His nausea seems to be pretty much gone now, thank goodness. Tonight Jon's daughters are going to call. Jon is really looking forward to hearing from them. Well, I'm going to head back into Jon's room. I'll write more later. deb

Forth Day - First Update

2009-09-21T09:47:00.001-05:00

Hi Everybody!

I'm on my way early this morning as I don't have to wait until 10 to see Jon. I'll tell him hi from everyone and will write again later. Thanks everybody for your emails, it helps us both feel connected back home.

Third Day - Second Update

2009-09-20T23:21:00.002-05:00

Hi Everyone,

Today was a different day than the last few. Since I was in Jon's room all day instead of short visits every 2 hours I was keenly aware of what was going on with Jon and could ask questions about medications, comfort levels, nausea and his heart rate.

First off, the nausea is getting better. He still has some issues but I think/hope he is over the worst of it. Jon has eaten some food, not a lot but a little. He is now getting a pill form of pain medication which lasts longer and helps him sleep. He is still getting nausea medication when he gets his pain medication. Jon told me he didn't sleep much if any last night and he had been running a low fever which is gone now but was a bit of an issue last night. Another thing that is concerning me is his heart rate which is running 117-120 bpm. Jon's Dad was concerned as well and said something to the nursing staff. They had already noted his heart rate and it could be just that Jon had just had surgery but they decided give Jon a beta blocker and a drug call albumin which is a protein that will take the fluid that is built up in Jon's tissues to his blood vessels and hopefully it will lower Jon's heart rate. The medication was started at 6:00 pm and by the time I left an hour later his heart rate was down to 107-110. Jon is also sporting a nitro patch which is a vaso (sp?) dialator that helps make it easier for Jon's heart.

Jon got up to sit in his chair. No big deal getting up and moving to the chair but he got very dizzy and couldn't stay up very long, only about 15 minutes. Getting back in bed is very painful. It hurt him so bad that he broke out in a cold sweat and was very pale. There was a nurse there helping Jon and made sure he was ok. The pain was very bad. Jon said that Dr. Miller was right, he never wants to go through this again.

All in all Jon is doing very well and I will be by his side bright an early tomorrow morning. The nurse told me I can come anytime I want. She said that Jon does much better when I'm there in his room.

I am hoping Jon gets moved to a private room in a day or so. Jon's roommate has had a lot of company and I wish they would talk in softer voices, they keep waking Jon up. I'm probably being silly but I think Jon will be more comfortable without so many people coming and going and talking so loud.

I will write more tomorrow. Who knows, maybe the next blog update will come from Jon himself!

deb

Third Day - First Update

2009-09-20T14:54:00.001-05:00

Hello Everyone, I'm happy to report that Jon has been moved out of the ICU into the IICU. Everything is going well. Before he was moved he was given a unit of blood. He is still having nausea problems and hasn't had anything to eat since Thursday evening. The nurse (don't know her name yet), will be trying to get Jon to try Jello or maybe a saltine. The thought is that if he gets something in his stomach the nausea will go away but he's just not wanting to eat anything so the nurse is going to really encourage him to try something anyway. Worse thing that can happen is he would vomit and that's nothing new, he's done that already several times. To me, nausea is almost worse than pain. Jon has also had the big IV in his neck removed. Not as many machines connected to him anymore. I'm with Jon's Mom and Dad and we're waiting for Jon to get settled in his new room. I am also working on having Jon moved to a private room. There was one private room available but the gentleman that had the double lung transplant got first dips on that, can't argue with that logic. We're hoping a private room will open up tomorrow. Mom and Dad are going to take a little shopping trip this afternoon. They're going to see if they can find Jon a robe and Dad wants to find Jon a new tie died shirt. We saw one in the cafeteria today and I mentioned that Jon would like it. Dad said that if he can find it, he's going to pick one up for him. Jon sends his love to Jessi and Nikki and their families, hugs and kisses all around. Jon also wants to say "Hi Everybody!" I'll write more later. deb

Second Day - Third Update

2009-09-19T21:58:00.001-05:00

Hello everyone, Jon has sat in his chair today which is great. He is still having a lot of trouble with nausea and is getting anti-nausea drugs when he gets his pain medicine. Good news, Jon will be moving out of the ICU tomorrow. He will be moving to the IICU which is Intermediate Intensive Care Unit. As I mentioned before, Jon's Dad was a surgical nurse in the service and he said that the best thing for Jon right now is for him to rest so we kept our visits to 3 times today. It was very hard for me to leave because I didn't want to leave Jon there alone but I knew that Dad was right and we need to do what's best for Jon. I will be catching the shuttle the first thing tomorrow morning and will see Jon at 10:00 am. On another note, it's going to be crazy hot here the next few days. They are predicting temps in the upper 90's to low 100's. Thank God and Greyhound for air conditioning! Jon sends his best to everyone and when he is in a regular room out of the IICU I am planning on reading him all of your emails. Thank you all for your good words and thoughts. Will send more updates tomorrow. deb

Second Day - Second Update

2009-09-19T15:02:00.000-05:00

Hello everyone, Jon's vitals are looking pretty good. His blood pressure is 117/62 and his heart rate is running between 90-100. Jon only has 2 lines left in, one is saline and the other is for dopamine, this is good, originally he had 6 lines in from surgery plus a few extra ones just in case they were needed. Jon was so very thirsty that he drank too much water too quickly and upset his stomach so he had to have some anti-nausea medicine and Vicki decided to wait before getting him in his chair. The sooner he gets into sitting up the better as it is better for his lungs to expand and clear themselves out to prevent infection. Jon was having pain and when his doctor stopped by (Dr. Capennelli (sp?) I mentioned that I was concerned about Jon's pain. The doctor said that of course he's having pain, we cut his chest open! hehe, I knew that but I thought Jon would be kept at a certain level of medication so pain wouldn't be an issue. I talked with Vicki and what's happening is that Jon will fall to sleep when he gets his pain meds and then when we come in for our visits Jon wakes up and the medication has worn off so he's in pain. Now I understand what is going on and I feel much better. It will be better when Jon's nausea is under control so he can take his pain meds in pill form as they last longer. The pain medicine he is on know is called fentenal and it must be some really good stuff because about 2 minutes after Vicki shoots it into Jon's IV, Jon's eyes start to droop and close and he relaxes. I will get to visit with Jon in another hour, if there is anything to report I'll write more then. deb

Heparin

2009-09-19T13:11:00.001-05:00

Sorry people, I didn't mean Jon was having heparin for pain.

Second Day - First Update

2009-09-19T13:09:00.000-05:00

Hello Everyone! Good news all the way around. Jon is awake and alert. For my niece the nurse (Selena), Uncle Jon's first words were "Hi, how are you?". He has a big smile and says he's feeling pretty good considering. He had some water and juice this morning. He said the apple juice was the best he ever tasted. He also had some Jello but couldn't keep it down. He said he's very hungry which is a good sign. Jon hasn't required a lot of pain medicine but while we were visiting he started having some pain issues. They must have been bad because Jon was starting to shake. His nurse Vickie was busy with another patient who had a double lung transplant a few days ago. I flagged her and asked for Jon's pain medication. Jon is on Heperrine (sp?), he can have it once an hour if he needs it. The nurse will get Jon up today and sitting in a chair, around lunch time. He can then start on pain medication in pill form which lasts longer. Vickie said that they will begin removing some of the lines this morning. Jessi and Nikki, your Dad sends his love to you both. When Jon's Mom and Dad dropped us at the hotel Wednesday night, we were all pretty much done in and Jon forgot to give his Mom a hug which bothered them both that they forgot. Jon made it a point to give and get a hug from his Mom this morning. More later, deb

Fifth Update

2009-09-19T00:55:00.000-05:00

We were able to see Jon one last time tonight at 10:00. He is coming out of the anesthesia (I'm not really sure I'm spelling that correctly, sorry), and was fighting and trying to pull the breathing tube out of his mouth so the nurse had to put him in restraints. She assured me that his response was normal and he would be ok. As we were leaving they had started the process of removing the breathing tube which will make Jon much more comfortable. They want to get the breathing tube out as soon as possible to avoid an infection in his lungs. I started to talk to him and tell him that he did great and that everything was ok. That his girls and everyone else in our lives were pulling for him and were sending good thoughts his way. He quieted down. I think he knew I was there. Jon's Dad said that he was surprised that Jon's vitals were so good (Jon's Dad was a scrub nurse in the service when he was younger). While Jon is in the ICU, we can only visit him for 1/2 hour every 2 hours starting at 10 am and the family waiting area filled up to capacity today so I plan on being at the hospital tomorrow morning by 8:30. I feel better being close to Jon, even if it's in a waiting room. It was very hard leaving Jon there tonight. Signing off for tonight deb

Forth Update

2009-09-18T19:28:00.001-05:00

Hello everyone, Jon is on his way to ICU. All went well. Dr. Miller did a transverse arch and ascending aortic replacement and new mechanical valve from Cardiomedics Sorin call the "Top Hat" as the St. Jude was too small. Dr. Miller decided that being Jon was a big guy, the St. Jude valve was too small at 21mm and chose the Top Hat which was 25mm. Jon's heart started up by itself but there was some gunk and his heart started to flutter a bit so he had to have a couple of small shocks but is ok. He will have a pacemaker connected to him for the next 24 hours or so. Dr. Miller says he's got the heart of a bionic man and was very VERY glad that Jon chose the mechanical not the tissue. Keep us in your prayers friends. I'm going to go see him now. deb

Third Update

2009-09-18T18:30:00.001-05:00

Hi everyone, We just got word that Jon is off the heart lung machine and they are in the process of finishing up and closing. It will be about an 1-1/2 hours before Dr. Miller comes out and talks to us. We have to wait another 1/2 after talking to Dr. Miller before we can go and see Jon in his room in the ICU. Getting off the heart lung machine is a big thing. Judi, Jon's operation coordinator said that things are going well. deb

Second Update

2009-09-18T16:48:00.002-05:00

Hello everyone, . Just got an update. At this point the surgeon is connecting everything back together. The next step is to get Jon's heart beating again. The doctor believes once the warm blood enters Jon's heart his heart will resume beating on it's own, if it doesn't, a shock will be necessary. Since Jon is so young and healthy, they don't think a shock will be necessary. Then the next step will be to get Jon off the heart/lung machine. Dr. Miller will be out in about 1 1/2 hours when he's finished to let us know how things went. Up to this point everything seems to be moving along normally. deb

First Update

2009-09-18T12:59:00.001-05:00

Hello everyone,

We just got our first update. At this point Jon is ready to switch to the heart lung machine. He was on anesthesia about an hour before the doctors began opening up Jon's chest. The surgery will take about 8 hours and our next update will be at 12:30 our time.

deb

Here We Go

2009-09-18T09:24:00.001-05:00

Hi everyone, Jon has just been taken to the OR. We have been reassured by everyone that Jon is in good hands, those hands being Dr. Miller's. Jon, I and Jon's Mom and Dad had a long informative talk with Dr. Miller last night. Dr. Miller is very straightforward doctor which we all appreciated. Dr. Miller strongly recommended Jon get the mechanical valve and after hearing that the amount of Coumadin would be very low, surgery would be simpler and chances of having to have another open heart surgery in his lifetime low, Jon decided to go with the mechanical valve. Just having that decision took a load off of Jon's mind. Jon and I were up at 3:00 am this morning, we caught a cab at 4:30 and were at the hospital at 4:50am. We were the first to arrive to the patient registration area. Jon was taken to the prep area at 5:15, and I was able to join him at 6:05. The nurse that took me back to him was very nice and commented that Jon was her favorite patient this morning as he didn't much if any chest hair that needed to be shaved off. His first line was put in at 6:40 and they had a bit of trouble getting it going. Jon's veins were being shy this morning. Jon was in good spirits. He asked me to give his Mom and Dad a big hug and told me what he told his daughters Jessi and Nikki last night, we will be the last thoughts he has before his surgery and the first thoughts he has once he is awake. As his doctors came to wheel him into surgery I gave him a kiss from all of us to take with him. I am now in the NICU waiting room. I was startled to see several people sleeping on the floor. I bet they had a tough night. The rest of us are trying to keep ourselves together and we all seem to share the same look, we all have the watchful eyes of the scared spitless. Jon's Mom and Dad will be keeping me company today. I will write more later and will post this email on our blog. Thank you all for your support and prayers. deb__

My Last Post For a While...

2009-09-17T20:32:00.003-05:00

We are back at the hotel for the evening. Mom, Dad, Deb, and I just met with the surgeon. Dr. Miller still thinks mechanical is the wise choice and Medtronic Freestyle is definitely out (not safe for a re-operation). Medtronic Mosaic is the best tissue option, St. Jude mechanical is the best overall option (for long term surgical outcomes). Long term durability of transcatheter is still uncertain. I have until tomorrow morning to make my final decision, but based on everything so far I'm back to leaning toward the mechanical. I can't imagine having to go through this again in 10-15 years (I don't want to do it this time!). The dosage of Coumadin I have to take is very low and about as minimally problematic as it can get. The clicking of the valve is something to consider, but less of a problem than it used to be. I have some stuff to sleep on.

Haven't heard anything from the hospital to indicate I can't have the surgery tomorrow (blood tests, etc) so the roller coaster is just about to the top of the first massive hill. We have to be at the hospital by 5:00 and surgery begins at 7:30 AM Pacific time. Dr. Miller is clearly the right guy to do this and his team is also very good and reassuring. Here we go!

We have heard from many of you and we appreciate all the good thoughts, prayers, and well wishes. This is all pretty much out of our hands now. We are counting on your continued support to keep the energy wave coming our way! Keep it up and we will catch up with you on the other side. Look for updates from Deb for a while. She gets to carry all the load for now!

Thanks,
Jon

Thursday Morning

2009-09-17T09:50:00.002-05:00

We're up early today to catch the shuttle from the Stanford Guest House to the hospital. Today, Jon goes through all of the pre-op preparations. We meet with the surgical admission team at 9:00 here/11:00 your time. Then at 1:00 Jon is scheduled for an echocardiogram. Then we're hoping to hookup with Mom and Dad to go get a late lunch before meeting with Dr. Miller. Jon wants to get in a really good meal before the surgery as he's not sure what his diet and desire for food will be after his operation. Jon does love his food :). Jon is almost sure what valve he wants but wants to talk face to face with Dr. Miller before making his final decision.

I think we are in the smallest hotel room ever! One of us needs to leave just so the other can change their mind! The tiny room is nice and while Jon enjoys his deluxe accommodations at the hospital the mini non-deluxe accommodations are fine for me. Once Jon leaves the hospital we are upgrading to a larger room.

I'll write more later. Love to you all.

deb

Arrived in CA

2009-09-16T14:35:00.002-05:00

Arrived in California safe and sound. Checked in and settling in. More later.

Last Day at Work (For A While)

2009-09-14T18:00:00.006-05:00

Today is our last day at work, for a while. Deb will be off for three or four weeks and Jon will be off until approximately Thanksgiving. Very strange feeling walking out today and thinking about what is ahead of us next. Our routine has been seriously disrupted and won't get back to anything resembling normal for quite some time. We are staying home tomorrow to pack, make sure we have everything to take with us, and have an opportunity if we've forgotten anything important to still have a chance to recover. Have to drop off one of the cats (Dakota) at a kitty kennel so he can be watched to make sure his urinary issues are truly solved and don't flare up again. Have to make a quick trip to Mounds View for Deb to drop off some StampIn Up stuff at Medtronic. While we are there we will meet with one of the program managers for Medtronic tissue valves to get one more shot of data to help us make our final decision. Dinner tomorrow night with Mom & Dad and then home to bed so we can get up bright and early Wednesday and trek to the airport with Mom & Dad through rush hour traffic (oh goody :-) Our level of anxiety is climbing rapidly, but we know we've done everything we can to eliminate as many unknowns as possible. We have that one last decision about which type of valve to select, but we are closing in on that decision quickly. The journey continues ...

Jon

Picnic in the park

2009-09-14T06:04:00.002-05:00

Had such a nice picnic today. Jessi and Nikki invited Jon and I and Jon's parents to a picnic at Central Park in Roseville. Jessi made egg bake and a tomato, goat cheese spread with these little squares of toasted bread, yum yum! Remembering her dad's love of Rice Crispy treats, Nikki brought enough to make Jon smile. Jon and I both enjoyed the time we got to spend with Henry taking the opportunity to take him on a short walk. He is one handsome grandson! Jon's mom and dad were very happy to have some alone time with Nikki and Jessi. Jacob hasn't been feeling well the last few days and has run a fever so he couldn't join us. Jon and I and his GGs were bummed but as soon as we get home from California we hope that the girls and their families will come to see their dad. It was sad when we left the park. The girls both know what is coming this week and gave both of us extra long hugs.

Fun Saturday Evening

2009-09-12T22:39:00.000-05:00

Hello Everyone,

We had a very nice day. Spent the afternoon with Mom, Dad and Kelly, Molly. Lots of conversation. As this is the last weekend before Jon's surgery, life seems surreal. We know in our minds what is coming but emotionally, it seems we are in some kind of flux. After Mom and Dad, Kelly and Molly left for the evening, Jon and I hooked up with Barb and Dave Karsky. Again, lots of good conversation and exchanging of ideas. The give and take between Barb and Dave and Jon and I is stimulating. Barb and Dave's garden is producing tomatoes at an alarming rate. Funny thing is, Barb is the only person in the Karsky household who enjoys tomatoes. So, I showed Barb how to freeze her bumper crop and she graciously is sharing her crop with the Spences. The coming winter is going to be filled with wonderful soups, stews and lasagnas. I'm hoping that everyone that reads this blog has had the same amount of fun and fellowship as Jon and I did on this Saturday evening.

By the way, would you be interested in purchasing a cookbook? My group (Deb's) at Medtronic have come together to create a cookbook for Camp Odayin. All proceeds, I mean ALL PROCEEDS go to this wonderful charity. Camp Odayin is a camp for children with heart disease and their families. The cookbook contains recipes from a broad cultural background. It contains over 200 recipes from staff from the Medtronic Programmer Software and Verification group. Each cookbook goes for $10.00 and as I said before, ALL PROCEEDS go to Camp Odayin. Won't you do something for someone else, pay it forward. It feels great!

If you want to purchase, 1, 2 or more, shoot me an email at: debora.spence@medtronic.com

One Week and Counting

2009-09-10T17:56:00.000-05:00

One week from tonight, we will be in California preparing for surgery in the morning. We will have our meeting with the Dr. Miller next Thursday evening where we can ask all those last minute questions we have about the procedure. Hopefully, Jon will have decided whether to go with the mechanical or the tissue valve at this meeting. Final instructions will be confirmed. Barring any extraordinary circumstances, the journey through this curve ball of life, will be all but at our doorstep. Trepidation is rising, but that seems somehow normal. If something like this doesn't scare you, something else would probably be wrong with you :-)

My parents are traveling to Stanford University with us and will be with us for about a week. They will be a comfort to Deb during her hours of uncertainty and waiting. I'll be a bit preoccupied, so they will have lots to talk about. Once I wake up, I'm sure we'll have some wonderful conversations that I won't remember anything of. Hopefully, they can share them with me after my lucidity returns (maybe it will increase over it's present level?).

Three work days left for Jon, two for Deb, and one more weekend. Dad and I put the pontoon into storage for the season on Tuesday this week. The to do list is getting shorter, which is good because there isn't a lot of room (or rather time) on it for many more items.

Wow, time is really flying by now!

Jon

Scheduling Valve Replacement Surgery

2009-09-07T22:07:00.001-05:00

We worked with Dr. Miller's staff and we now have a scheduled date for Jon's aortic valve replacement surgery.

Surgery by Dr. Craig Miller (http://stanfordhospital.org/profiles/physician/D_Miller/) will take place at the Stanford University Medical Center in Stanford, California on Friday, September 18. Deb and I will fly out to California on Wednesday, Sept 16. Pre-surgery tests and consultation with Dr. Miller take place on Sept. 17. At present our return to Minnesota is planned for a worst case contingency of Oct 6. Hospital stay is expected to be 5-10 days, with an average of 7. At that point, we could fly home when discharged, but they need to see me once after the surgery. So, we are going to hang around in Silicon Valley for our follow-up appointment with Dr. Miller. Deb will be staying at the Stanford Guesthouse during our time in California (I will have accommodations for most of my stay and will join her at the Guesthouse following my discharge :-)

Surgery plan is still uncertain regarding mechanical vs. tissue aortic valve replacement, but best advice says mechanical and that means a St. Jude mechanical to boot. Not a wonderful pill for a Medtronic guy to swallow :-( But, they clearly have the best product on the market at this time when it comes to mechanical valves. I'm still exploring tissue valves, which would be a Medtronic product. No easy answers here! Expecting some repair or replacement of the aortic root and the ascending aorta as well. Surgery will require a full open-heart procedure including the split sternum and heart bypass during the procedure. I will have to talk to my friends in perfusion to make sure we have all the good Medtronic hardware there for the heart lung machine!

Recovery time is expected to be approximately 8 weeks.

Information about my condition (bicuspid arotic valve disease) can be found at:

http://stanfordhospital.org/healthLib/greystone/heartCenter/heartConditionsinAdults/heartValveDiseases.html

http://bicuspidfoundation.com/Bicuspid_Aortic_Valve_Disease.html

We know many of you are worried and concerned, and we expect that many of you have no idea what to say. Don't sweat it. We're worried and concerned as well, but we're looking forward to me feeling better somewhere on the other side of all this. We also have no idea what to say except thanks for all the good thoughts, prayers, and wishes we've received already and the ones we know we will continue to receive. Deb and I thank all of you for what you have done already and for what you may do over the next 3 - 4 months. We can't do it without you all!

Thanks,

Jon & Deb

Finding a Surgeon

2009-09-07T21:44:00.000-05:00

As I said in my last post we were at a loss as far as selecting a surgeon for this procedure. Nothing in our experience told us how to proceed. It turns out that several of the dear friends we had informed, who also work at Medtronic, had contacts and they weren't afraid to use them. Within 24 hours we had executives in the Cardiac Surgery division working on our behalf to help us find candidate surgeons. We also had a very important guardian angel working on our behalf.

In addition, someone at Medtronic apparently forwarded my information to Dr. Stephen Oesterle, Medtronic's Senior Vice President of Medicine and Technology, who I believe was on vacation in the Atlantic at the time. Prior to joining Medtronic, Dr. Oesterle has served as Associate Professor of Medicine at the Harvard University Medical School and as Director of Invasive Cardiology Services at Massachusetts General Hospital, Boston. A teacher and innovator in the field of cardiac catheterization, he has also developed and directed interventional cardiology programs at Good Samaritan Hospital, Los Angeles; at Georgetown University; and at Stanford University. This was definitely someone I needed to listen to and take advice from. Dr. Oesterle e-mailed me as soon as he heard and immediately scoped out my condition and what I knew about it and started working my behalf to find the best person he could for my surgery. He quickly put me in contact with Dr. Craig Miller at Stanford University in California.

I talked to Dr. Miller on the phone and he explained his approach to my case and we discussed tissue vs. mechanical valves. We talked about the potential re-operation that tissue valves would require for someone my age (8-15 years life expectancy for current tissue valves). Dr. Miller assured me I wouldn't want to go through what I was about to go through twice! I was concerned about the mechanical valve and the fact that coumadin would be required for life to thin my blood and prevent the build-up of platelets and clots on the artificial mechanical valve. There are other technologies on the horizon that Dr. Miller and I discussed, but he wasn't ready to bet my life on them just yet though they have great promise. In the end, he agreed he would do what I wanted, but strongly encouraged me to consider mechanical as the best first choice. In the end I had a good feeling about this particular surgeon and Dr. Oesterle pointed out that this wasn't the kind of operation that just anyone could do with great skill and experience. We decided to work with Dr. Miller's staff to see how soon we could get on his schedule and have this operation done.

The results in the next post.

Jon

Spreading the Word

2009-09-07T21:26:00.000-05:00

We had several people to share this new information with and we looked for the best possible avenue to do so. For immediate family, we went to the phone and then we met face to face with the closest - my parents and my daughters. For friends and remaining family members we used e-mail. E-mail is wonderful and tragic at the same time. Telling someone who cares about you something like this by e-mail seems equal parts quick and lifeless. However, Deb and I wanted to get the word out fast and keep dealing with all this ourselves. At work, I also used face to face for immediate supervisors and our department head. For my work team, I tried to find a time to get everyone together, but it didn't work out, so I resorted to e-mail for them as well. Deb sent e-mail to a group of our work friends and others.

I had one other major complication to deal with. I was the chair for Medtronic's annual Science & Technology conference in 2009. This conference is held in the fall each year and this year is going to be our 28th edition. Medtronic's Technical Fellows are responsible for organizing and selecting the content for this conference and we were in the middle of accepting abstracts for potential topics. We were just about to start our review process and then quickly thereafter to begin building the program so we could open registration. My co-chair didn't know what was about to hit him. I had an opportunity to warn him face-to-face as soon as I knew this could potentially sideline me at any time, but the last thing he expected is that he would have to host the conference this year. Co-chairs watch and learn one year and then become the chair responsible for the conference the next year. This year, it was very likely that my co-chair would have to step in to replace me because I would be facing surgery. I let the entire conference planning committee and Technical Fellow community know my situation via the conference committee blog. We were close to having notified everyone we needed to.

Now we needed to focus on finding a surgeon and getting this scheduled. Where do you start something like this? We had no idea how to proceed. Luckily, we had another guardian angel we didn't yet know about who would be instrumental in helping us move forward.

Jon

What Did the Cardiologist Report

2009-09-07T15:24:00.000-05:00

So, I met with Dr. Brian Ip, Minnesota Heart at Fairview Southdale on July 28. Dr. Ip informed me that I did indeed have Bicuspid Aortic Valve Disease and that I had a severe aortic valve stenosis. I had no idea I had this congenital condition until July 28, 2009 -- some 53+ years since I was born with it. Apparently it is very common for people to "discover" this condition in their 40s or 50s. I'm right on schedule. Typically, symptoms are pretty severe, and in my case, other than the fatigue I was largely asymptomatic.

Dr. Ip continued to explain my situation. Severe stenosis exists when the valve opening area is less then 1.0 mm square. My reading was estimated at 0.8 mm square. Normal is greater then 1.5 mm square. I wasn't getting a lot of blood through this important valve, the one between the left ventricle and the "alaska pipeline" feeding fresh, oxygenated blood to my body. No wonder I was so tired! Dr. Ip ordered a CT angiogram to verify the condition of the valve, the aortic root, and the aorta itself. This disease I had is a connective tissue disorder that often affects the valve, the root, and the ascending aorta. Sometimes it even involves the aortic arch. The angiogram confirmed the valve was badly calcified, the ascending aorta was bulging and I was going to need a valve job and relatively quickly at that. I made sure to get a copy of every piece of information about my condition right away so I could use it to consult with a surgeon, as soon as we found one.

Now the big question was who would we find to do the work, where would we go, and when would we be going there? And, how would we start letting our family and friends know about what was facing us?

Jon

Our Big Surprise!

2009-09-07T15:11:00.000-05:00

I had my echocardiogram the morning of July 24. I asked the clinician who performed the test if she saw anything I should be worried about, and she carefully informed me that, yes she may have seen something "interesting" about one of my valves, but she would have to have a radiologist review the information to see if it was anything to worry about. I left my appointment convinced we hadn't found anything to help with my diagnosis here. Turns out I was wrong. By early afternoon, the clinic had called home and scared the spit out of Deb by telling here I needed to contact them to see a cardiologist immediately. She called work, had me pulled out of a meeting I was in, and the big surprise began to come into focus. When I called the clinic, they told me I had aortic valve stenosis and I needed to be seen by a cardiologist within the week. I didn't have any idea what they were telling me, but I set up an appointment for July 28 with Dr. Brian Ip at Minnesota Heart at Fairview Southdale. In the meantime I started researching what aortic valve stenosis was. I quickly found out it wasn't good and there were several different kinds of it. One kind was caused by poor eating habits and bad lifestyle choices. Another kinds was caused by a congenital condition known as Bicuspid Aortic Valve Disease. Neither of these seemed possible since I wasn't in poor health or was I aware of any genetic condition in my family related to BAVD. As I reviewed more, it appeared highly likely that the only "treatment" for this problem was an aortic valve replacement procedure which required open heart surgery, bypass, and all the associated complications. Waiting from Friday to Wednesday for my cardiologist appointment was a long, scary few days. Many bad scenarios passed through our imagination and nothing looked too encouraging for our long term options. We had no idea if this was an immediate problem, or something that could wait, but based on the urgency of the clinic, we figured this wasn't a wait several months sort of problem. The cardiologist was up next.

The Start of a New Journey

2009-09-07T14:50:00.000-05:00

I have been having some fatigue issues for a while now and on May 20 of this year I went to my doctor to see if we could find out what was causing it. This was not your garden variety 53-year old type of fatigue, but neither was it an urgent, scary kind of fatigue. Just somewhere between and persistent and concerning enough to embark on what was expected to be a tough diagnosis. There are only many 100s of things this could have been and nothing obvious was standing out. My doctor started eliminating the obvious things. Blood tests were ordered, nothing serious showed up. One possible reading was worth throwing some drugs at, but after seven weeks, no significant improvement occurred. During the follow-up appointment on July 15, Dr. Thompson (Fairview Lakes, Wyoming, MN) performed another exam. In the process of checking my heart again, he thought he heard a faint murmur though nothing obvious. So, an echocardiogram, along with a rheumatology appointment were ordered. The echocardiogram was scheduled for Friday, July 24th. This is when everything came into clear focus and changed our journey through life permanently!

Jon

Welcome to Our Blog

2009-09-07T14:35:00.000-05:00

Welcome to a blog about the life of a dynamic duo, Jon & Deb Spence. We are partners in life and love and we are each others' biggest fans. We have our ups and downs, just like everyone, but together we are a powerful force -- and, we have a lot of fun in our lives. Our families and our friends are precious to both of us and we couldn't do it without all of you. We wanted to provide a place where we could share what is going on with us with our family and friends, and this is that place. We hope you enjoy sharing in our lives. We certainly enjoy sharing in yours!

Love,

Jon & Deb