My Dad

My Dad turned 76 today. It was nice that I could be here to wish him a happy birthday in person. I haven't been able to to that in many years. He spent most of his birthday doing things for me. I had to go back to the hospital to have my blood tested and my blood thinner level adjusted. Dad also helped me with my first shower since coming home. It's a humbling experience to need your Dad to help you in the shower, but my Dad is very patient and we got everything done safely.

So Dad is my hero again, just like he was when I was a kid. I was very lucky to have him for a Dad. He has always been completely devoted to his family. He and Mom have been married 51 years. Mom never had to worry for even a minute that Dad might be up to something he shouldn't be. My sister and two brothers would agree with me - Our Dad is the greatest. He took me on adventures as a kid, taught me to play ball, showed me how to fix things, and always set the best example. So when it was my time to be a father, I mostly did what he did and I think I did alright. So he was, and still is – my hero.

But he was a hero to lots of other people too. Dad was an FBI agent, then later a special investigator for the Florida State Attorney. His work put a lot of bad people in prison. He has several letters from J. Edger Hoover thanking him for his work on specific cases. Mr. Hoover also sent Dad a congratulatory letter when I was born. It is one of my most important possessions.

In 1977, Dad was on the front cover newspapers all across the country. A young mother of two was abducted from her Jacksonville, FL home and held for ransom. Dad was one of the two agents that brought Jack McWilliams into the Federal Courthouse to face kidnapping charges. The scoundrel was convicted and is still in prison today. The young woman was found alive on the third day. She had been bound, gaged, tied to a tree, and left for dead in the woods. She is still alive today. My Dad was one of the real heroes behind a happy ending.

I'm really glad my hero is still here with me. He's good health is a real blessing, and the result of his healthy lifestyle. Hopefully, my new heart repairs will help me stay as healthy as he is.

So Happy Birthday Dad, and thanks for being my hero.

The six-day Blur

Shortly before 5:00PM Monday, almost exactly six days and 12 hours after we left for the hospital I arrived back at Mom & Dad’s home. Dad unpacked the car while Mom and I took a walk around the neighborhood. A kind neighbor had made Lasagna and salad for our first dinner. We watched a DVD and I had my first full night sleep in a week. A real sense of calm came over me and the realization finally set in – I survived it.

Through the fog of pain and pain medications, I have a hard time reconstructing what happened and when. Time simultaneously, dragged and raced. I spent a great deal of time with my headphones on listening to my iPod. Sometimes music, but mostly I listened to an audio-book that I had downloaded just before going into the hospital. The Places in Between, by Rory Stewart, Is a fantastic tale of this Scotsman's walk across Afghanistan, beginning shortly after the fall of the Taliban. I will have to start the book over because my retention was almost nil. It did serve as the backdrop for some fantastic drug-induced dreams with talking camels and meanderings through never-ending caves, and smoky coffee houses with bad guys lurking in every corner. So my heart surgery journey with a predictive positive outcome around 98%, is linked in my mind with his journey that had a survival outcome of less than 1%. Yet we both emerged from it. My journey was a no-brainer - it had to be done. I never will understand what drove him, but I do admire his courage.

The most striking thing to me is how many people at the Mayo Clinic touched my life in the last week. A few I hope I never forget, like Brenda Blevins the Intensive Care Nurse that took care of my every need for three nights. Others came and went quickly, their names can’t recall even now and their faces will no doubt soon fade away. They checked my vital signs, cleaned my room, or briefly examined me. If I were to make a guess, I would say about 200 people came into contact with me, but the real number could have been half or twice that. As I’m writing this no doubt another patient has taken my place and is undergoing heart surgery today.

By far the most uplifting thing for me was when medical students were brought in by the doctors to examine me. The doctors always ask your permission first and then each one of the students will also ask also. I enjoy the thought that years from now one of these students will see a person with and odd combination of symptoms, think to check for aortic valve regurgitation, put two-and-two together quickly enough to kill off the bacteria before it has damaged someone’s heart. Or better yet, one of these students may be the one to develop the molecular therapies that fix heart defective valve problems in early childhood.

Of course, I’m disappointed that the surgery revealed more extensive damage inside my heart than was detected by the TEE test. The need for the second surgery with a pacemaker was an extra blow that my body has to deal with. But the system worked from me this time. All those people were in place with the skills and resources necessary to fix my heart and I thank God for all of them. My problem was found in time and the repair was successful. Now I need to get busy rebuilding my respiratory system and caring for my broken sternum.

Better day today

We arrived early this morning to find Ken feeling better but very woozy from the sedatives. His pacemaker surgery went well. He now has a Boston Scientific pacemaker implanted under the skin with a wire to the heart so that he never has to experience a stoppage. If the heart fails to beat for more than two seconds it will kick in.

They want him to keep the arm on that side immobile for ten days to give the wires time to set in place. He has a "sling" for that arm. At first he said they made him wear a cast-like contraption that was very uncomfortable (invented by the nazis, according to Ken) but after he threw a "tantrum' they replaced it with the sling if he promised not to move his arm. (Oh, yes, he is feeling better!) He is unable to use his laptop in this condition so I am the deicated "blogger" for now. He was moved out of ICU about 4 this afternoon and most of the tubes and bandages were removed.

The only issue that is bugging him now is they administered a diruretic to clear his body of fluids to prevent swelling around the heart. The diruretic causes him to pee literally every 5 minutes. He has let everyone know how stupid that was since he was going fine on his own. Talk about pissin' and moanin'!!!!

He should be coming home in two or three days. Pray for me.

Mary

Scared to Death!!

When we left Ken yesterday he was feeling good (well, relatively speaking), eating, talking, moving around, etc. I was preparing to leave for the hospital this morning this morning at 7 am when the phone rang. It was Ken with the news that his heart had stopped during the night - Mine almost did too when I heard that news. We both went over there and were able to have a conference with both his heart surgeon and the "electric engineer of heart surgery", Dr. Fred Kusomodo. (yes, Fred). He explained that the electric system had shut down and they needed to insert a pacemaker to prevent a recurrence.

They took him to surgery at 1:00 and he came out at 5. He was out like a light. The doctor told us he did fine and everything would be ok - so now he has a "back-up" just in case it should happen again, which he felt was very unlikely.

When we got home, our friends Cindy and Bob had prepared a delicious dinner for us! Welcome sight!

I am using Ken's PC which is not easy for a long-time Mac User!!!

More tomorrow.

Mary

They will keep him in the ICU a couple more days.

24 Seconds

I'm finally able to type my own blog entry. I'm glad my Mom was able to do that for me. My commmnets may not make much sense becauso of the pain medication and thje monitor attached to my right index finger. Mom says I'm ornery, well I'd like to know who wouldn't be. Open-heart surgery HURTS!


I sincerely appreciate all the nice comments. Thanks to everyone that took the time to write a note and keep me in yoiur prayers.

When Lewis Grizzard had his heart valve replaced, his heart just refused to restart. For several days that he was kept on a combination of heart lung machines and artifiial pumps. Lewis has me beat again. My heart started just fine. Everyuhing seemed to be going to plan. The nerses make me get uip walk about 200 feet three times yesterday. After mye evning walk last night for no apparent reason my heart just stopped - for 24 seconds! That does not sound very long, but it scared the hell out of me. I had about 6 nurses frantically running around my room. Thankfully, it started itselft back up. I guess the thing just needed to reboot.


The doctors suspect that the extensive scar tissue from my infection caused this. tell me that that wandering around with a heart that inexplicably stops and starts is not a good thing. They had so much fun have doing the first operation they figured, what the heck let's do another one.

So now I am off to the operating room for two more hours.

Ken is much better!

We found him to be much improved today. They removed the pacemaker wire, the catheter and a couple others of which I do not remember the function. He asked for some food because in his words "this hospital food sucks." (We had one breakfast in the cafeteria and we can tell you that is true!) He looked very good for someone who has just recovered from being cut from stem to stern.

He asked for his cell phone and laptop so I expect that by tomorrow he will be writing his own blog.
He will appreciate all your comments. Thanks.

Mary

Ken after surgery

We visited Ken this morning and again this afternoon. The am visit found him feeling better than we expected. He was able to sit in a chair and eat some jello. He had a sore throat from a tube they removed. He was having difficulty talking so we did the talking and he listened and nodded. His color looked good and we were pleased with the progress.

This afternoon we found him feeling lousy and his throat was so sore he could not talk at all. He had a note pad and scribbled notes to us. He was in the bed and asked to be put back in the chair as he felt better that way. He did improve after sitting in the chair and actually became a little
"ornery" He felt much better at 7 pm when his favorite nurse, Brenda, came in. God bless Brenda!
She made him feel much better. He ate some soup and drank some Boost and his throat (and attitude) improved greatly. That is it for today. We are very tired!

Mary

The surgery

I am Ken's mom. We took him to Mayo Clinic at 5:30 this morning (REALLLY). They took him in at 7 am and began surgery shortly after 8. We heard nothing until 2:30 when his doctor took us to the conference room to tell us that the surgery went well, however, they found a much more damaged heart than expected. Seems the infection that he had earlier plus several years of a leaking valve had left much scar tissue and other damage.

They took him to ICU where we saw him a couple of hours later. He was still asleep and the nurse explained they wanted to keep him asleep for a few more hours. They were giving him two units of blood and he has tubes attached. We were told it would be good if we came home and got some sleep and returned tomorrow. He is in good hands and the nurse was excellent. We will go tomorrow morning and hope to find him awake and alert. I will post again tomorrow night.

Mary King

Only one excuse left

I'm down to my last few hours before surgery. They have almost run out of reasons for delay.

Today, they did warn me of one last possible delay. It seems that in addition to doing heart valve replacements like mine, and other things like coronary bypass, my surgeon is on the heart transplant team. If a a donor heart becomes available for someone in need of a heart transplant, he would have to do that surgery. So unless that happens, my operation starts at 7:30am, Tuesday February 16th.

Hearing that kind of put things in perspective. Fortunately, no one has to die so that my heart can be fixed. My valve will be replaced with one called the St Jude Valve. This mechanical device will outlive me. Since everything else in my heart is just fine, the new valve should do the trick and I'll be as good as new.

Mom and Dad will take me to the hospital in the morning. I need to arrive at 5:30am. Not much point in sleeping tonight since I'll be asleep most of the day tomorrow. I guess I'm as ready as anyone can be.

Hold Everything - my surgeon has the flu

According to the schedule I should be in the operating room now with surgeons up to their elbows in my chest. But I'm at Mom & Dad's posting a blog entry.

Doctors are like everyone else, when something is going around they get it too. My surgeon is at home in bed with the flu. We have tentatively rescheduled for next Tuesday, but that depends on how quickly he recovers.

It is a little difficult to get mentally ready for the surgery only to have it postponed. So I will just have to find something to keep me busy for the next few days. The weather here in Florida is beautiful so I'll find something to do.

Except for the valve, my heart is in good shape

Doctors have now checked the blood vessels of heart and found no vascular problems. This is very good news. Surgery is less risky since they don't have to worry about any existing damage and once the new valve is in place I won't have any excuse for being lazy.

Cardiac Catheterization involves injecting some dye directly into the heart and watching it on an x-ray monitor. To get a catheter into the blood vessels doctors inserted a catheter into my groin. They claim this is the best place on the body where a large artery passes close to the skin, but it has the additional advantage of maximum embarrassment for the patient.

Since they are working around the groin, of course one's undershorts must be removed. Once the entire staff of nurses congregate in the room, one of them breaks out the clippers and starts shaving. No doubt she's the one with the least seniority. Having cleared the area where the catheter will be inserted on the right side, the nurse then shaves the left side. I inquired as to why it was necessary to shave me on the left if the catheter goes in on right. They claim this is necessary in case there is a problem getting the catheter inserted on the right side. I guess that's much more information than I should have shared, so I just have one more word on the subject - Mohawk.

Oh well, small price to pay for knowing that my heart arteries are all in good shape.

My Schedule

Location:
Mayo Clinic in Jacksonville Florida

Monday February 9th
Echocardiogram

Tuesday February 10th
Blood tests (no eating for 12 hours)
Consultation with Cardiologist Dr. Joseph Blackshear
TransEsophageal Echo Cardiogram - Also know as the Garden hose down the throat test, see my earlier post.

Wednesday February 11th
Cardiac Catheterization - This sounds like no fun at all.
Surgery preparation including shaving large parts of my body that I prefer not to have shaved.
I may or may not stay at the hospital Wednesday night, that will be determined by the doctors after the catheterization

Tuesday February 17th (changed from Thursday February 12th)
This is the big day. My surgeon is Dr. Kevin Landolfo

I expect to be in the hospital about a week. My recovery at Mom & Dad's house should take four to six weeks.

Lewis Grizzard is dead and now they are after me

On March 21st, 1993 the southern humorist and writer Lewis Grizzard checked into Emory hospital in Atlanta to have his aortic heart valve replaced. Things did not go exactly as planned and the ensuing complications provided Lewis with enough material to bang out a book on his typewriter. The book called I took a Lickin' and kept on Tickin' was published that fall. Just about the time Lewis was able to cash his first royalty check, things began to go wrong and on March 20, 1994 Lewis died, one day shy of a year after he first checked-into the hospital. An earlier book by Lewis was called Elvis is Dead and I don't feel so Good Myself.

Well I don't feel so good myself, thus the title of this blog. Doctors have decided that I need the same surgery and have concocted a plan to plunge into my chest shut my heart off so they can tinker around and replace my aortic valve. Needless to say I'm not thrilled about this. I mean if they could kill Lewis then what's to say they won't kill me.

Like Lewis, I was born with a defective aortic heart valve. A normal aortic valve looks like the hood ornament on a Mercedes-Benz, mine is called a bicuspid, which has only two flaps. Also like Lewis I was unfortunate enough to suffer from an infection known as endocarditis. This nasty and reclusive bacteria called Streptococcus viridans finds heart valves delicious and eats them up, chomping a good size hole in my already less than perfect heart valve. As they say, genetics loads the gun – environment pulls the trigger. So now when my heart pumps, much of the blood runs right back in. Doctors say that this overwork would cause my heart to enlarge and eventually lead to a heart attack. Jimmy Buffett sang about surgeons "I don't think that I would ever let 'em cut on me" but given my alternative, I'm going to let 'em cut on me. As I write this I am 6 days away.

A smart man facing heart surgery would read optimistic tales of the 98% of heart valve replacements that are successful, but I read Lewis's book. Now my odds are significantly higher than his. For one thing, the surgical technique has improved in the sixteen years since Lewis's heart refused to restart. Lewis also had two previous heart surgeries while surgeons have not cut into me since a small hernia when I was three. For another, Lewis's lifestyle choices were somewhat less healthy than mine. His first meal after being discharged from the hospital was a Chilly dog, fries, and a milkshake at the Varsity. Lewis also had a cocktail named after him. A double Grizzard is a glass of Vodka and another glass of orange juice. Lewis ordered his drinks that way to keep bartenders from mixing more than a dash of juice into his vodka. My eating habits are a good deal healthier while bottles of alcohol around my house risk being arrested for loitering.

The surgeons may be after me, but I am very confident in their ability. My surgeon has done more than 8,000 operations (and no, I don't have any idea how many didn't make it – and I don't want to know.)

Thanksgiving

I spent Thanksgiving day with Mom and Dad. Grandpa made the drive from Daytona Beach (about 90 miles each way). Grandpa is 92 and still healthy. In fact he looks pretty much the way he always has. We had a great meal and enjoyed our time together. Tomorrow Mom and Dad are driving me home to Raleigh. It will be great to see my son Max, who is home from college. I have much to be thankful for.

Although tired, I am feeling better each day. Best of all, I have gained 4 pounds since the antibiotics were started.

I am thankful for my family and all the friends who have offered me prayers and best wishes. Here is wishing everyone a happy Thanksgiving.

The PICC Line

I'm out of the hospital and recuperating at Mom and Dad's home in Jacksonville, Florida. This is a good spot for me to rest. It was great to sleep in a regular bed with no one waking me up to draw blood or take vital signs or hang another bag of antibiotics on my IV line.

The bacteria in my system is most vulnerable to a continuous dose of antibiotics. Letting those devils alone for even a short time allows them to regroup, establish a new base, and continue their assault on my heart tissue. In the hospital this is done by an IV line. But I need the antibiotics for four to six weeks. So now I have a pump that delivers the dose almost directly into my heart 24 hours a day.

The method for doing this is called a Peripherally Inserted Central Catheter, or PICC line. A small tube in inserted in my upper arm. From there it follows a vein almost to my heart. I Carry a small pump with me everywhere I go and a small dose of antibiotics is squirted directly into my heart all day and night. It may not be the sexiest fashion accessory around, but it allows the battle to continue while letting me get almost back to normal life. I can't get it wet so swimming is out. My Dad is an expert at wrapping it so I can shower while it stays dry.

My arms are pretty sore. I say arms because there was a complication in the first PICC inserted in my right arm. So they repeated the procedure in my left. But that should heal in a day or two.

It is an amazing bit of technology. I just need to keep it with me. I look like I'm carrying a purse so I will get teased about it. Small price to pay for the benefit it is giving me.

Test Results

The only really good result from the TTE test would have been that my heart was undamaged by the infection, or that the damage was minimal and did not require surgery. Unfortunately, my aortic valve was damaged and surgery will be required. This will be open heart surgery requiring a week hospital stay, followed by three weeks of limited activity (not even driving) while the chest heals.

The surgery can't be done until the doctors are sure the infection is completely clear, that takes four to six weeks. So the surgery will be sometime early in the new year.

The doctors disagreed about wheather my heart valve is salvageable. One thought a repair job might be possible, the other two don't think so and believe a replacement is required. But all three said that the decision would be made at the time of surgery based on a new TTE test.

The idea of having my chest pryed open and doctors tinkering around my heart is unnerving as hell. But on the bright side, the doctors said I'm an ideal candidate because I have never experienced any chest pains and aside from the valve all the other heart tissue appears undamaged.

The Garden Hose Down the Throat Test

The antibiotics are waging war on the bacteria, and at 72 hours the bacteria is on the run. Unfortunately the little buggers are experts at hiding, kind of like Osama Bin Laden, they find remote caverns and can lay low for long periods of time. Intravenous antibiotics must be delivered for four to six weeks to be sure they are all dead. Thankfully that can be done as an outpatient. I may be let out tomorrow, but that depends on several factors.

Today the doctors wanted to assess the damage done to my heart tissues, particularly the valves, by these nasty bacteria. The test is called a Transeophageal Echocardiogram (TEE). A regular echocardiogram is similar to the ultrasound shown to expectant parents, good enough to see the major structures, but with all the ribs and other tissues, the picture is not clear enough. To get a better look, a TEE puts the ultrasound device very close to the heart, by sliding it down the throat.

The thing is about the size of a garden hose and it is in there for 15-20 minutes. So they gave me some awful tasting lubricant to help it slide down the throat, then thankfully put me under. I felt nothing at all of course, but my throat is a little sore and it hurts a little to talk.

Tomorrow I will post the test results.

Thanks for the Good Wishes

Wow, I am so grateful for all the kind notes and words of encouragement. I'm sorry that I don't have the time to offer a personal reply, but I will when I'm able. I'm sure that all the positive energy and prayers are helping me.

Diagnosis

Here is what they think I have. Endocarditis.

This sounds kind of bad, some nasty bacteria entered my blood stream and set-up a base of operations in my heart, specifically on my aortic valve. This unwelcome guest can damage things to the point that heart surgery may be necessary to repair the valve.

but I don't want to jump too far ahead of myself. The doctors are intravenously delivering some pretty powerful antibiotics, to battle the bacteria. This began shortly after I was admitted, about 36 hours ago. At the moment I'm feeling better than I have for weeks. The antibiotics may be doing the job.

They have been drawing blood out of me every 12 hours. The bacteria levels are being monitored to see if the antibiotics are killing of the bacteria.

Monday will be another day of testing. There are several tests scheduled to determine if my aortic heart valve has sustained any damage, and if so how much. Once the results of those tests are known, then the doctors will advise me of my options. So I'm going to be pretty anxious until then. But I'm definitely enjoying feeling better.

Why I'm at Mayo - The Midnight Phone Call

I have not been well for several weeks, feeling tired and cold and also losing weight. My doctor has been searching for a cause, but had not found the source of my illness.

At the suggestion of a friend (thanks Clark!) I applied for an appointment to the Mayo Clinic.
I was surprised to be granted an appointment almost immediately. I arrived at 8am Friday to complete the paperwork, met with a doctor promptly at 9am. By 10am I had a schedule of appointments for various tests around the clinic that would consume the next 3 days. Since this was a Friday, the tests were going to take me through Tuesday, culminating with the dreaded Colonoscopy. I was amazed at the efficiency of the place. Each time I arrived at a new station, the records were there and with only a few minutes waiting, I was called in.

By Friday afternoon I was getting tired, but hopeful that all these tests would reveal something. Back at Mom and Dad's, I enjoyed a nice dinner and some quiet time (there is still nothing quite as comforting as Mom's cooking.)

Shortly before midnight a doctor from the clinic called. They had found a reclusive, but nasty strain of bacteria in my blood at it looks very serious. He advised me to come to the Clinic's Emergency Room as quickly as possible. Although unnerving, at least we were on to something. My Dad drove me to the Emergency Room and I was admitted.

The last time I was admitted to a hospital it was 1971. I was in the 7th grade. I got hurt playing football and the doctor thought I might have some internal injuries. Fortunately, I was better the next day and sent home with instructions not to play for a week. I don't think things will be so simple this time.