Mixed emotions

I had my first follow up appointment with my cardiologist yesterday. It was nice getting out the house in spite of the global warming.

He spent about three minutes with me reviewing my meds (good), reviewing my blood pressure (good) discussing my exercise (do more). He wants me to become really aerobically fit and lift some light weights to stabilize my chest area.

But of course, I had questions...

My lower back is feeling better but not well, did he have any ideas? (no). My center chest and back are now my main pain sources (normal). And then the big kicker...did he believe I had a heart attack before? (Unequivocally no).

So I had been doing some more research on my Aortic aneurysm. Cedars Sinai has done work with patients who have the bicuspid valve and aneurysm. They call it a disease. One of the things I gleaned early on was that the Aorta feels pain. In fact they described my previous heart attack (episode) scenario but attributed it to the aortic pain caused by transient high blood pressure.

So I bring all this up to the cardiologist and I get the cold shoulder. He wasn't aware of the research and findings but said my situation was different. But as I questioned that assumption it continued to be clear he was eliminating something from consideration without understanding it. As I further explained the findings and its obvious applicability to my scenario he said it was possible. This is without him being able to explain what happened during what my previous cardiologist called a heart attack.

The reason for my bringing it up is that this disease can have weakend connective tissue associated with it and they screen patients with my scenario for brain anuerysms. I asked if we knew what the cellular structure (normal or abnormal) of the Aortic walls were in the area we removed? He then read the surgeon's report which made no mention of it...and asked me to call the surgeon!!!!

Basically, if the cellular structure is fine there's no reason to suspect other arteries. If not, its best to get some scans. So I am calling the surgeon today to ask if he looked at or necropsied the Aorta section he removed. That should go over real well with him.

I am scheduled for a follow up echocardiogram to baseline my new parts in a couple months, otherwise the cardiologist is done with me...he took a cell call during our meeting to discuss a valentines gift for his wife...is that a bad sign?

Some housekeeping

There are few things I need to mention.

I stayed at Baylor's new heart hospital when I had my heart attack. The facility was great, nice woods, comfy inviting rooms etc but the staff all seemed like rookies. At Presby the facility looks like One Flew Over The Cuckoos Nest. Its all tile and linoleum and those awful hospital paint colors. Everywhere you go it looks like you could hose the place down at night (I shoulda checked to see if there was a drain in the middle of my room.) Anyway, the staff were all pro's, at every turn you felt like this was business as usuall, quality practices were the norm and there was an esprit among the staff. I had zero concern about the staff, with one exception.

During my recovery there was the snotty girl from physical therapy. You could tell the staff didnt really like her and I of course joined right in when she began to downplay my restance to her recommendations. She had this poorly written sheet of excercises that were not specific to my surgery, and stated over and over again that my surgeon really wanted me to do these...

Otherwise everybody was great.

So it may be that those fancy hopitals make up for their inexperienced staff with great facilities and food. Or maybe the hospitals with bare bones facilities make up for it with better staff...either way it is a no-brainer for me...spend the money on experienced team oriented staff and hose down my room at night.

Having said that I got the intial bill yesterday for the procedure....$66,0000 after discount. I was in shock for a bit...over 12k a day. Okay, maybe I shoulda got a great room with an ocean view, three gourmet meals a day for me and my family, some spa treatments, AND a great staff.

Slowly healing

I have been using the heating pad without much success. Its frustrating to have more pain when I breath in my back, rather than my chest. Based on all my research it doesn't seem to be kidney related and may in fact just be muscular, but it sure isn't healing.

In fact, all healing progress seems to have slowed to a crawl. I worry about sneezing because of my back (deep breath) while the rest of the pain, and even the incision, seem to just stay the same.

My walking, especially the last three days outside, is going well. My internal thermostat has been re-calibrated and most everything else seems pretty normal. Occasionally, I can even forget I am recovering from open heart surgery.

I drove home!

I had my last appointment with the surgeon yesterday! He cleared me to drive, waived off the cardiac rehab, and suggested a heating pad for my back. ( Not too sure about that one...).

My pill count went down again and my real challenge is to keep my blood pressure under 130. I can exercise to my heart's content as long as I don't lift anything over 20 lbs for 2 more months. Basically the recommendation is walking and more walking.

He felt that those topical treatments for the scar are a waste of time. The heart pounding I hear will go away in a couple of months, and I don't need to see him for a year.

If my back didn't hurt so much I would be feeling like things couldn't have gone any better.

This Friday marks four weeks since surgery. My next appointment is with the cardiologist next week.

Saturday!

As if what day it is matters...

Tried to sleep without pain pills last night and woke up with severe back pain.

My thermostat is still way off so I cant seem to get temperature comfortable and I can hear my heart beat, all of which the doc says is normal. (Something about how the pericardium is sewn back together.)

I had my first sneeze yesterday, which I had been dreading, but it wasn't so bad.

I wont be allowed to drive until I can walk a mile in under 30 minutes for a few straight days. I am getting close to that now.

Thanks for all the kind thoughts and comments.

Back already!

Turns out I am fine. The chest xray looked great. The surgeon was little perplexed about the pain I am experiencing and recommended some heavy Advil dosage. My official follow up is next Tuesday.

I am not sure about the urgency of the appointment now, but I am glad to have my mind at ease.

Going in this morning...

Its exactly 3 weeks since the surgery.

I reported yesterday that this side/back pain isn't getting any better. They asked that I come in first thing today! Kinda scared me a bit but Vicki talked me down. So chest x-ray first then meet with the surgeon. Side still hurts.

Long days

Now that I don't feel so incapacitated, it just seems the days take forever. I get the value of rest and recovery but man...I am finding watching the clock and calendar to be mighty frustrating.

I am going without pain meds this morning just to see how it goes. I want a more realistic feeling for where I am in recovery. I'll either feel pretty good about it, or end up curled up in the fetal position watching Oprah.

I have a pain in my lower back, more on the side, that hurts when I breath deep, in fact its the most painful thing I have lingering...not my chest, incision or anything sensible like that...my kidney area??? Doc says we should keep an eye on it...

My stitches are coming out slowly and it's amazing how quick that heals. I had the surgeon do the incision like a shark bite so I can show it off to chicks at the beach.

Two weeks and two days...

Most of the tape goo on my body is finally gone. My meds count keeps coming down and I generally sleep pretty well. I was able to move back to the bed this weekend with a normal compliment of pillows.

I am getting lots of rest, to the point of boredom. I think I am starting to build a tolerance for the Percoset, as my aches and pains seem to linger. Paula is getting closer to weaning me off her care and leaving me at home for longer periods of time.

I will be transitioning from walking around the house to working on the treadmill...because you cant stop me, you can only hope to contain me...

Wednesday January, 7th Pills

I am no longer enjoying the profuse sweating that was occurring all the time...it was like my thermostat was off kilter. The Surgeon (who answered his phone btw) had some quick recommendations, including more pills of course. We slept together (Paula and I, not the surgeon) on the sofa Tuesday night as the power was off...we were really camping then...

Pills- just for fun, and my medical friends, lets look at all this stuff:

Aspirin therapy - ongoing
Lasix - for running the Kentucky Derby or getting fluids out...
Potassium - just in case you lose too many minerals peeing like Secretariat.
Nexium for my tummy
Toprol to stabilize the heart, prevent future complications
Amiodarone - to really really stabilize the heart rhythm short term
Rampril- to lower blood pressure
Crestor-another statin for me to try, especially good at protecting the valve.

I am beginning to reduce the quantity per day...

I worked my way through my bowl of pills this morning in the time it took to write this.

Paula headed to work today, I am headed for the sofa...

Monday morning

Its taken some time to get the meds right (22 a day and counting) and also figure out how to sleep. It's also worth noting that I originally misspelled approximately half the words in that sentence. We don't really have the sleeping thing down but I am beginning to believe sleeping in a recliner might be the best path...

Last night we abandoned our bedroom and slept on the sofa, I encouraged Paula by saying it would be fun, kinda like camping! It turns out I wasn't lying...its just like camping. Long interminable night of cramps, aches and cold extremities. Paula had to get up and tape paper to the windows to help block neighbor's lights, (not you Janie).

The cat thinks we should have been "camping" all along and enjoyed the experience.

I was a little hazy all weekend, how did the Cowboys do in the playoffs?

I anticipate a better week and again thank you for all your kind words and prayers.

PS Please keep your Memorial Day Sunday blocked f0r us and the remembrance of Gene, it wont be a somber affair.

A Run of Bad Days

Hi All -

Unfortunately, but to be expected I understand, the last few days have been those proverbial bad days for Mark. Nothing to be alarmed about, we've been in touch with his surgeon, changed up his meds a bit, have figured out how to make him more comfortable at night, etc. He did get his walking in today and seemed to rest more comfortably than he had been.

He asked that I update you to say that he's looking forward to updating you further as soon as his energy returns a bit.

P

Wednesday of recovery

I'm home. Thanks to everyone for all the positive support, prayers and well wishes. You guys are great!

First the minutes of this meeting:

The body is pretty amazing system, its really complex and really resilient. If I didn't already have one, I'd get one. My thoughts are with Gene and his family some, but I will have to deal with that more later, (personally)

Review: I have read the details of many of these surgeries and its amazing how different most of the accounts are.... Just suffice to say, if i rendered all the details down you would find the differences are; hospital practices, nurses, cardiologist, surgeon, equipment, and the person's physical, emotional and mental makeup. Otherwise the paint colors seem similar in the halls.

Upon arriving home I did walk around the house and think of a heart that wasn't giving me what I needed and it now pumping 100%. It was kinda exciting but I have tried not to let these expectations, well, become expectations. I did however box up my previous energetic life and give it to Paula for Christmas, in hopes that was what I was giving her this year.

A few details for this entry. It turns out the valve I was born with, was bicuspid, instead of tricuspid, the aortic root aneurysm (dilation) a normal byproduct of the bicuspid valve. That means it was a birth defect that gets worse over time as the lips of the valve curl back.

I have it on my key ring if you ever want to see it...

Home Now

Home on Tuesday afternoon.

Resting in ICU

Mark's surgery went very well today. The surgeon confirmed that Mark was born with a bicuspid valve rather than the tri that 95% of us have. The flaps were folded over, contributing to the severe leakage and explaining his difficulty with cardio related activities. He now has a nice new valve which will improve his quality of life markedly.

The surgery was 3 hours from when they wheeled him away from me until I was talking with the surgeon.

He is resting now in ICU and progressing very well according to his nurse.

My sister and brother-in-law drove in last evening which was a nice pre-op distraction for us and I've been in her capable hands all day.

Thank you for your love and prayers,
Paula

Its today! Yawn....

Early AM for surgery. Slept fine, Paula not so much. My anesthesiologist called me at home last night to check on me, answer any questions and review my instructions.

We talked about the anesthesia and apparently he will use four different types during the operation. The tricky part, whenever working on the lungs or heart, is to keep everything working while you're under. Seems like a reasonable goal...

Pre-op tests

Merry Christmas!

This past Tuesday, December 23rd I headed back to the hospital for more tests.

You can make an appointment but it isn't necessary. We did call ahead to see how busy they were...which they weren't. I arrived, checked in, got blood work, an EKG and a chest x-ray in about 45 minutes! I have seen emergency rooms with very few people there go slower than that!

My hospital has valet parking and a Starbucks, along with live Christmas performers in the lobby. I got music, great service, a decaf latte and my car brought around for me...sweet!

No-one called me to tell me I passed customs or whatever so I guess I am ok.

Report at 5:00 am tomorrow, Friday, for surgery at 7:30.

Reschedule?

We lost a dear friend this week. His funeral ended up being scheduled for this Saturday, the day after my surgery. I was torn about the surgery vs the funeral. His widow wanted me to deliver a eulogy and I felt compelled to do it.

My first discussion with the surgeon's super admin, Vicky, made me feel that it was of course up to me and they would do whatever, except the surgeon was off for the rest of the year and my reschedule would have to be the following week. Paula needed to be back at work and I really didn't want to delay...or pay another deductible for 2009 that would end up being wasted (long story).

In the end I had a friend video my eulogy, to be played at the funeral, and lots of my family will represent us. I will be there in image and spirit. So, I hurried down to the hospital for the pre-op tests.

Oh ya, Vicky did get my requested anesthesiologist scheduled for my procedure! Another reason I didn't want to reschedule.

Post-op Projections

I talked to my surgeon's admin who is great by the way (especially if I get my anesthesiologist). I wanted to know what to expect post op.

First, I will be "up and around" immediately. These days you're walking around the floor ASAP. Dr.'s orders. The hospital stay should be four days without complications.

Recovery varies but my surgeon's test is if you can make a mile walking in less than 30 minutes you are cleared for regular activity. It takes up to 90 days for the breast bone to heal but you can get on with your life long before that. I keep wondering about driving, or riding in a car. If you were to be in a frontal collision, the seat belts and airbags could wreak havoc. I guess I will be the one driving around town backwards.

The surgeons office will be responsible for my post op care and my pain meds. Its probably a good time to buy Vicodin stock as I don't plan on scimping. Actually, you do have to be careful with addiction so I will move to alcahol as soon as I can...

So, recovery is pretty much up to me, and the admin says that the better shape I am in going in...the better my recovery will be coming out...uh oh. That's how this all started!? I am in the worst shape of my life right now...

Preparing for Surgery

My procedure is scheduled for the 26th. The day after Christmas.

I received a call from my Cardiologist also following up on the Cardiac CT. He echoed that this didn't change anything and he is sure there isn't anything more we need to do while I am laying there with my chest cracked open. I asked if there was anything we should be looking for while we're in there that might be part of the heart attack issue. His response is that we "need to close the book on those" they were an anomaly. Easy for him to say.

If the front wheel fell off your car out on the highway for no definable reason and the mechanic later said don't worry about it...would you worry about it?

Anyway, I get some anti germ soap to bathe with leading up to the surgery as well as some nasal gel to kill stuff in my nose. I guess the least sterile thing in that room will be me so I need to "scrub" as well.

We have canceled our trip to OKC for Christmas because those kids carry germs that I am not resistant to...I am very concerned about catching another cold right before surgery.

I think I am ready.