Mark's Heart Valve Journal

So I breezed by the 5 month mark and am feeling pretty good. My longest run up to this point is 6 miles on Thanksgiving weekend. I've been pretty busy with my daughter participating in 'Journey to Bethlehem', so I've slowed a bit this last week. I have, however, decided to run in the LA half marathon on January 13, 2013 (http://www.131losangeles.com/). I'll be running for World Vision with funds raised going to help provide clean water for communities in Africa. Please checkout my page at http://support.worldvision.org/site/TR/TeamWorldVision/TeamWorldVision?px=1280928&pg=personal&fr_id=1820. I've never participated in a marathon before so please keep me in your thoughts and prayers as I train over the Christmas break and through New Years.

OK, it's been awhile. There hasn't really been too much to report. On Oct 1 I stopped taking the blood thinner (Warfarin), so I'm free of any prescription medication. Just taking low dose aspirin, which is indefinite. Today I saw my PCP for a 3 month post-surgery check-up (a little late). He doesn't see the need for any restrictions and to 'listen to my body' when exercising. I asked some specific questions about symptoms that I wasn't too sure about and mainly I just need to let my heart and body continue to adjusting to the new, healthy heart valve. Additionally, one of the 'symptoms' is likely due to the weight loss and fact that I'm exercising more consistently now.

On a side note, I've been torturing myself running and have worked my way up to just short of 3 miles in one continuous run. I have a few more weeks to decide if I want to attempt to begin training for the LA half marathon so I can run to raise money for a good cause. More to come . . .

This last week I had an echo completed Monday morning and then saw my Cardiologist on Tuesday morning. Based on the results of the echo and a general evaluation of my health (consistently good blood pressure, wound is healed, no other specific ongoing issues) he doesn't want to see me again for a year. I have to keep taking the blood thinners until October 1st and not do anything strenuous to my chest (push-ups, bench press, etc) for another month. I am good to exercise otherwise as I would like, so I think it's time to start training for a marathon. :)

I'll probably post something here and there, but for the most part I'm out of the woods and likely won't post very frequently going forward. Thank you all for your support and I hope this blog has been helpful for everyone to keep up on what's been going on. In ~15 years when I have to do this again, hopefully they can replace my valve without cutting me open, but I have ~15 years to worry about that.

Well, I returned to work last week on Aug 2, just a bit over 5 weeks after surgery. I think the timing was good so I didn't get too used to having everyday be a 'home maintenance and chores' day. I'm actually feeling great. A little tired with the longer hours working and taking Noah to football practice every night, but he's enjoying football and his coach made him the defense example last night with his extensive defensive background, so he felt pretty good about that. I've been 'power' walking and squeezing in some jogging over the last week and that's worked out pretty well so far.

Next week I get a baseline echocardiogram done and then I should get one annually after that to monitor the valve and eventually define the timing for another replacement (~15 years from now).

It's hard to believe it's been 4 weeks, but that's where I'm at (it seems longer). I'm certainly feeling much better than I expected at this point, but not completely out of the woods yet. Noah starts football practice late next week so I've been trying to throw the ball around with him, but given all the warnings (and not wanting to re-break my sternum) I find myself stepping out of the way of the ball so it doesn't land squarely on my chest. Maybe I'm just being overly pre-cautious, but just a few more weeks and I can let up a bit. Deep breaths are still causing chest discomfort and I'm hoping that's everything still healing and not because of the wires holding my chest together. The wires could optionally be removed later if I determine that they're bothering me. And lastly, there's still some lightheadedness when standing, but it's worse when I bend or squat for longer than 15 seconds or so and then stand up.

I guess I missed the 3 week mark yesterday, but it wasn't all that interesting. Today we went to see the cardiologist for the first time since before the surgery. He was very pleased with my progress and the sound my heart is now making. It didn't take much to convince him to take me off the blood pressure medicine, so that's no more (yea!!!). Now I'm just down to the blood thinners and that'll take a bit more time to be rid of. I also still have a few strings that haven't disolved completely yet where the tube holes were, but with some time these will be gone. Lastly will be the baseline echo in mid-August. This will be the second look at my new valve and we'll use this echo as a baseline to monitor my valve going forward to make sure it's healthy and working properly and monitor for the future.

So, you might wonder what was the worst part of the entire surgery experience (assuming that it's all downhill from here)? Well, I've thought long and hard about this and have a few candidates.

First, one might think it was knowing that your heart has been stopped and being on a heart and lung machine and then a ventilator, but I don't remember either of these at all and just had a sore throat as a token to remember this, so I don't think I can use these.

Second - Apparently I was quite out of it in the ICU and making unreasonable demands, like wanting to go to Disneyland, asking for a soda and demanding that I go home now. Again, I cannot remember this part of the ICU so I think this has to get thrown out as well.

Third, there's the breathing. Wow, who'd of thought that a three hours in surgery would lead to needing to learn to breath all over again. And a walk that's just 100 feet (with a walker) would be completely exhausting and lead to a naptime. As bad and uncomfortable as that was I don't think that get's the prize either.

I could mention the hospital food (at least I was told it was food, but I don't remember it tasting like anything I would eat on purpose - er maybe it was the drugs changing the taste of the food?). But, hospital food is just too obvious.

Then you come to it. Something so horrific that I found myself sitting in the sun on Monday still dealing with it. Maybe gasoline or kerosene would take care of it more quickly. Are you dying to know what it is? OK, tape residue. Yeah, tape residue. This horrific stuff must be made specifically to leave as much of itself behind as possible. And then finding it in places you don't remember having something taped to and wondering what was taped there that you didn't know about. I think the last of it has now been found and dealt with, but there's always tomorrow to find a little more. And yes, more than 3 weeks after surgery, I'm still finding it. Something must be done so future patients don't have to deal with this nasty stuff.

So, two weeks ago I left the hospital and 17 days ago was surgery. I took a very short trip to Costco with some family and I drove for the first time today. All was good, but shifting my manual was a bit uncomfortable. As long as I stick with places a mile or two from the house I should be good for now.

OK, so I got the Dr. to half my dose last week, but after today he's insisting I keep taking the blood pressure medicine (although my blood pressure is remaining low without it) for now. More to take up with the Cardiologist next week. Upon a friends suggestion and OK from the Dr I'm starting to take it at night starting tonight.

Well, it's been almost a week and I've progressed quite a bit. I've ditched the pain medication (last one I had was on Monday). There's a bit of chest and shoulder discomfort, especially when moving around or trying to use my arms for things. I found I could not scoop ice cream very easily if it was not really soft. I'm now making it around the block on walks and can move at a pretty good pace walking. The dizziness/lightheadedness seems to be better (not gone) and I'm breathing pretty normal now. I'm also more comfortable going out to multiple places (i.e. - Dr today, pick up Lauren and go to grocery store all in one trip). We've even ventured to the beach, where I took a nap.

Wendy and I went to see my PCP today. Everything is generally good with my health (good blood pressure, etc). I'm having a new issue where I get really dizzy while standing, but it's to early to really attribute this to anything. The Dr cut my blood pressure medicine in half as this might have an impact. Also, since the surgery, my heart-rate has averaged 75 - 90 at rest and before surgery my heart-rate averaged 60 - 70 at rest. Not sure if the heart-rate increase is permanent or not.

After the Dr we went to Chipotle (Mmmmmm) for the first time in 3 weeks for lunch. Did I say Mmmmmmm. Why can't they serve this at the hospital?

Kind of surreal I've been home 4 of the last 7 days. I've been up and around the house a lot more over the last day or so. Someone had to supervise my dad and son doing the yard work. When the pain meds wear off, there are interesting new pains I've never noticed before. Hopefully those will fade away as well soon. I've been primarily working on increasing my respiratory so I can get completely back to normal while breathing and then increasing my ability to endure while walking.

Happy 4th everyone!

Wendy thought it was weird that I wanted pictures in the hospital, but now I can look back and remember what really looked like cause I don't remember some of this stuff. I do remember being in the Cardiac ICU and I kind of remember all the stuff I was hooked up to. Anyway, added a picture of it for your pleasure.

you can see the dozen or so various IV drips (holy cow, no wander why I can't walk straight), the things on my legs to make my calves more muscular, and on the more graphic side you can see the IV going into my jugular still in place.

Me in CCU

If you're interested and OK with a mildly graphic photo look in the photos section. The website turned it sideways and it's when the bandages were just removed, so it's already looking much, much better.

Incision wound just after bandages off

I know that all the combined prayers from friends and family in California, Colorado, Kansas, Missouri any many states and countries abroad has shown me Gods favor for this part of my journey, for which we would not have achieved what I feel is just short of a miraculously fast recovery out of the hospital.  They were even ready to move me out of the ICU Tuesday evening but there weren't any beds available until Wednesday.

Trust is also a key component anytime you relinquish partial orcomplete control of our lives to someone or something else. The Drs, Nurses, staff friends and family supporting me had my complete trust and cooperation, which kept me fairly calm and relaxed while in the hospital.

Proverbs 3:5-6 (NIV)
Trust in the Lord with all your heart and lean not on your own understanding; [6] in all your ways submit to him, and he will make your paths straight.

Thank you all again!

Please take the time to send some of that support to our many friends/family in Colorado Springs that have been directly or indirectly impacted by the multiple fires accros the state, but one of the more horrific is the Waldo Canyon fire which has now taken hundreds of home and lives in the Colorado Springs area. It is also still well under 50% contained.

Yesterday afternoon Wendy and dad drove me home from the hospital. The drive home was the most 'exciting' part (down the 101 and the 110 at 3 PM on Friday). It is good to be home and the improvement in food quality has actually made me hungry again.

Last evening the bandages were remove from my incision wound and we got a first look. The nurses were impressed with how nice it looked and said my surgeon had one of the best/clean cuts. I'll have to post a picture of it later.

Apparently I was pretty far under for the surgery. Reports are that I wanted to go to Disneyland, have a coke and go home and then I kept asking for the kids. I'm sure that seeing that would have scared the kids to death. At least I didn't get violent but I guess thats why I was fastened to the bed. Fortunately, I don't remember any of this so I'm denying it all.

Yesterday afternoon an echo was performed and my new valve is working perfectly. This morning is a final chest x-ray and I'm on target for release from the hospital later today, a day early.

Who'd of thunk that an IV would go into your jugular.

Yesterday went pretty well. In the morning I almost wanted too go for a jog, but that quickly changed this afternoon as I fell into a slump and realized exactly where I was at.

Went for a walk this morning and about on to #2.

Just down to a few wires hanging out of my chest.

He was just transferred to a regular room about 2 hrs . Ago! I had a big chicken and rice dinner with him (they had an extra) Now he is resting! Thanks everyone for all your prayers!

Wendy

Sometime this afternoon he will be getting out of ICU! Just ate lunch about 45 min. Ago. Took every bit of strength he had to eat....is resting now! Oh, they also took the juggler cathader out about 15 min. Ago too! Yay

Wendy

Chest hurts, but the jello and water are good!

Mark!

We went back to see him and he was coming in and out the breathing tube was already out! He is Talking Using short sentences! When asked where he was he said Disneyland! A few min. later he wanted to go home and a coke! He has wires coming out of his chest still and neck monitoring his heart while holding onto his heart pillow! Ahh!

Wendy

Just heard from surgeon ....he is done early! It went really well! They might take breathing tube out in an hour! Wow, that is crazy! We'll get to start seeing him in an hour! Can't wait...praise God!

Went into surgery about 800ish! Had a good attitude and was feeling good wanted more! Haha we told him good stuff is coming later!

He just got called back for Surgery Prep. It's 6:35 now his parents and a good friend of mine will be here within the next hour! He has his personal heater going....it's cold back here! Lucky duck!

Wendy

We got here at 5:05 and waiting to be called back. Relaxed and at complete peace. Thanks again for all your continued prayers! Wendy and my sister Ester are hanging with me until I get wheeled into surgery.

May God's peace be with you all.

Spent the day at the hospital campus doing final tests, paperwork and meeting with the anesthesiologist. As of now, it's all go for tomorrow morning at 8:00 AM (where'd that chicken exit go?). Going for one last jog, a lite dinner and lay awake until 3:15 biting my nails. We have to be at the hospital at 5:00 (that would be AM) and supposedly under by 8:30ish. This will likely be my last post as Wendy will be picking up posts tomorrow.

Today marks the start of preparation for surgery. Nothing to major, but I had to start showering with surgical soap. I then went on to one last round at outdoor chores, but I think I got a bit too much sun. Guess I'll have to take it extra easy for the next two days.

Well, of course for my last day at work for ~6 weeks there had to be some flames to be doused, but it probably would have been a boring day without the excitement to keep my mind off what is to come. I then went home and jogged as I have been since February. Exactly 1.48 miles and that was enough. Chest pounding and aching. Just 2 or 3 more jogs and then we'll see how long it is before I can jog again. My sister and family is here and my parents, Noah and Lauren are due in by dinner tomorrow . . .

We went to the surgeons office today. It was pretty routine with a lot of questions about who will care for me and how difficult my house will be to get around in after surgery. I again expressed that I would like a biological valve. Dr. Jones seemed to be on the same page with the valve decision. They then ran down the average schedule for this surgery. He had looked at my Echo, TEE and Angio videos and was also a bit surprised at how much calcification there was on my valve. We then had to wonder around the campus to take care of some paperwork and blood tests.

Typical surgery (mileage may vary - very watered down and oversimplified):
Day 1:
5:00 - Get to Hospital, Surgery prep
8:00 - Surgery
12:00 - Out of surgery (Cardiac Surgery ICU)
Day 2:
Early morning (or later Day 1) - Take me off breathing machine
Move out of Cardiac ICU
Try to get out of bed and walk, incentivator
Days 3-4:
Short walks
Internet access restored
Days 5 - 7:
Go home

First, thank you all for your support and prayers. Encouragement is good medicine.

I started jogging again about a week ago around the 27th of May. At least I'll get a good month of exercise in before surgery on the 26th of June. Most of the discomfort from the hematoma was gone about 3 weeks after the original incident and the bruising mostly subsided shortly after that. The bruises in my foot went last. Yeah, all the way down into my foot. Now, I just have to cope with these loud and getting louder gushing noises for 3 more weeks.

Not sure what I did, but on April 19th about an hour after I had quit my activities for the day I noticed that there was some pain when putting weight on my upper right thigh. I went to work on Friday and by Saturday it seemed better so I continued with a weekend of trimming bushes, mowing the lawn, jogging and other household chores. By Sunday afternoon I was pretty tired and collapsed on the couch for an hour. I got up and a pain shot through my hip and I could barely put any weight on my right leg. I waddled around a bit and it got to feeling a little better so we went on taking our daughters friend home. We went into her friends house and I was limping pretty bad. They then had to help me back out to the car as I could no longer put any weight on my right leg. We went home and turned back around and went to the hospital. At first, they thought I had a dis-located hip as my right hip was hard as a rock and sticking out quite a bit. An X-ray revealed that my right hip was fine, so the ER Dr was getting ready to dis-charge me with a muscle spasm diagnosis. I pushed back as the pain was quite intense and not getting better, so the ER Dr gave me something to relax me and handed it off to the head ER Dr. Not sure exactly what happened, but he decided on a CT scan, which revealed a huge hematoma that had developed in my upper right thigh (lose blood inside the body, kind of like internal bleading). This was likely caused by some trauma that caused a blood vessel to rupture and blood to start leaking (likely the trampoline on Thursday). Various activities and sitting or lying in certain positions probably made it leak faster and because I was on thinners it didn't clot very well. They proceeded to admit me to the hospital. First they had to fill me with Vit K and wait until my thinning dropped to a level where they could insert a filter into my blood vessel leading to my heart (to keep blood clots from going into my lungs). Monday night I was given a few units of plasma as I had lost a lot of blood and my Vit K level was not normalized enough yet. Tuesday morning they took me in for the procedure. I got to talking to the surgeon and explained my history to him. We both realized that they hadn't completed another ultra-sound to see if the clot from February was still there. If there was no clot, there was no reason for the filter. So, he ordered an ultra-sound and couldn't find the clot anymore, which is why I was on thinners to start with. I was discharged on Tuesday and am at home the rest of the week. The Hematoma was and still is quite large. The pain started to subside on Tuesday. I'm hobbling pretty funny now and still taking pain medication in the evening to sleep. The hematoma will take 2 – 4 weeks to dissipate. My entire right leg and lower back is purple, blue and red as the blood from the hematoma drops (a gigantic bruise). Not sure how much blood I bled internally, but it has been quite painful.

The good news is that my heart surgery can now be scheduled since I'm off the thinners. I have it scheduled for Tuesday, June 26th.

The fix for the blood clot was a 3 month blood thinning regimen.

I'm actually not that excited about blood thinners overall and for that and a few other reasons I am still opting for a biological valve replacement, even though I'll have to have it replaced again in ~15 years. Although the blood thinners themselves did not cause any symptoms I had to watch my diet closely and not change the amounts of specific foods I was eating. I'm not sure how well I did with this. Anyway for the next few months it was pretty much life as usual. I continued with my low salt, low fat, low Vit K diet, exercising and doing mostly normal things.

OK, so almost immediately after I get home from the angiogram purple bulges start forming just below the angiogram location. I didn't really know what they were, but by the end of the weekend one of them was nearly the size of a few tennis balls. I had a Dr. appt scheduled Monday morning so I had him look at it and he thought it was OK and would just go away. Over the next 3 days it continued to grow and get more painful. By Friday it was starting to subside, but my cardiologist wanted to have it checked out anyway just to be safe. This led to an ultrasound to look for a pseudo-aneurysm, but instead they found a blood clot in my leg. Since it was too late in the day they had to take me to the ER.

I would not have chosen 4:45 PM on a Friday to go to any ER (and especially not in Los Angeles), but given the timing was not my choice, here I was. The Dr. tried to get me direct admitted, but I was forced to sit in the ER waiting room and be in the queue with everyone else. After a very, very, very, very long 10 hour wait in a room with no cell phone reception I was called back.

Although and angiogram is not strictly required to diagnose, it's useful to gauge the impacts on the heart of the condition. This would be the first intrusive procedure I've had done. They basically make a hole into a vein and artery in your left and put a probe up and into your heart. They can measure pressures on valves, insert contrast fluid and take pictures. I'm sure there are many other uses, but this is just my limited knowledge of what was done to me.

Wendy and I had discussed moving forward with the valve replacement, but I figured it wouldn't hurt to have a little more data, so we pressed forward with the angiogram. The procedure was not painful at all and aside from the freezing cold room and having to lay still for 4 hours the whole think was pretty uneventful. Doctor said my heart was not currently under additional stress due to the procedure and replacement would be based on symptoms going forward and my call as to when to move forward.

What's a Trans-Esophageal Echocardiogram (TEE)? It's basically an echocardiogram, but the probe is in your throat. This was done in early February. I was pretty nervous about having something shoved down my throat and being awake for it, so they gave me a triple dose of the sedative (didn't help much) and a local anesthetic on the back of my throat. All-in-all it wasn't too bad. There's a fair amount of gaging involved, but no pain.

The TEE revealed that my aortic valve was indeed bi-cuspid. OK, so what's this bicuspid thing? It's a congenital defect where two of the three leaflets grow together when your heart forms. About 1/2 to 1% of all people have a bi-cuspid aortic valve. Some have issues at a very early age and some never need to have it replaced. I had both the head of cardiology and my cardiologist present for the procedure.

Later in January I had a CT performed. This was primarily to look to make sure I don't have any aneurisms, which would require immediate surgery to correct so they don't rupture. I had never had one of these. The echo is pretty much an ultrasound, which I hadn't had before, but Wendy had them a few times. Blazing new territory. They took me into the room and hook up my IV to a line It was pretty straightforward as they pull you through the machine, but the contract fluid they inject causes you to get really warm all over and was a trip. Good news, no aneurisms, but they still could not see whether the valve is bi-cuspid or not. Time for a TEE.

In mid-January I went to visit the cardiologist. He slightly modifies my diagnosis to regurgitation (valve leaks and doesn't close all the way) and stenosis (narrowing of the valve) with heavy calcification on the aortic valve and some calcification on the mitral (mitral calcification likely caused by the back-flow of blood onto it). We discussed how my valve got into this condition and whether I had ever had rheumatic fever, which I hadn't. The most likely cause was a bi-cuspid aortic valve, but the echo wasn't clear enough. Next step was a CT scan.

On December 29th I get news that my echocardiogram results are back and I have moderate aortic regurgitation. I had no idea what this was, so I began searching the web to learn more. Things were now starting to click and make sense. My Doctor said if I wasn't having any symptoms not to worry about it and we'll check it again later. I told him I had lots of questions so he referred me to a cardiologist and I set an appointment for mid-January.

In late November of 2011 I decided I better go have a physical as I was still sure something was wrong, but just didn't know what I was looking for (maybe just getting old). I set-up an appointment for mid-December. Everything seemed to check out OK with a slightly high Cholesterol level but he also wanted to have the murmur checked out with an echocardiogram. I had this completed on December 27th, 2011.

In the fall of 2011 I started noticing my heartbeat. It seemed more prominent than usual. At first I thought that maybe I was nearing a heart attack or it was stress related. We were in the process of moving from our town-home in Redondo Beach to a house in Torrance so I started paying more careful attention to my diet and moved on.

I've always had a heart murmur. Most doctors weren't too concerned and for many years my doctor in Colorado didn't seem to concerned about it. In July of 2010 I had a physical and my doctor suggested an echocardiogram but I did not have time to complete it before moving to California. That summer I hiked up Pike's Peak and enjoyed an active lifestyle outdoors hiking and a bit of bike riding. Aside from getting short of breath easily there weren't any obvious signs of problems with my heart.