Pretty Good Day

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!

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!

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!

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...

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)...

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

Jon

Not for the Faint of Heart...

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!

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 :-)

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

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

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

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

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

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

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

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

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

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

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

Second Day - First Update

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

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

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

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

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

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

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...

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

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

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

Last Day at Work (For A While)

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

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

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

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

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

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

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

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!

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

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

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