Friday, April 3, 2009
Time To Go Home
Lewis couldn't turn to his Mom and Dad when he had Endocarditis and when he needed surgery. For me, Mom and Dad were there the whole time. Nothing could have been better for me than their love, care, and support. Who says "you can't go home"; I did and I'm alive. I'm on my way to a complete recovery, thanks to Mom and Dad.
Today I completed another series of tests and my recovery is progressing. I am now well enough to go back to my own life. I'm still weak and underweight, but I am getting stronger. I have been here almost 8 weeks. The time has come to say goodbye to Mom and Dad and return home.
I really don't know how I can ever thank them, words just don't do it.
All I can say is; thanks for being here when I needed you most. I can never repay you.
Thursday, March 26, 2009
I THUMP, therefore I am
Thump, Thump, Thump.... all day long.
Thump, Thump, Thump.... all night long.
Thump, Thump, Thump.... For The Rest of My LIFE!
The first time I returned to the hospital the cardiologist put her stethoscope in her ears and had the business end about a foot from my chest when she said "wow, that really is loud!"
I expected to hear it, I was informed of this before the surgery. A clicking sound is one of the "minor" downsides to the mechanical valve. Here is what the manufacturer says on their website:
Some patients have indicated that they hear a clicking sound during quiet or restful times. If you hear this sound, rest assured; it just means that everything is working fine. This clicking is actually the sound of the mechanical valve leaflets closing. Not all people will even hear the clicking. Your individual anatomy and physiology affects the sound. Mechanical valves also sound differently in different people. The St. Jude Medical® mechanical heart valve has been shown in studies to be one of the quietest mechanical heart valves available.
If this is one of the quietest valves available I would not want to be in the same neighborhood as someone with a loud one.
The doctors cite several factors for my unusually loud valve. Because I am so thin I have little tissue to absorb the sound. Seven centimeters of my thick aorta (5mm) have been replaced with a thin (1mm) synthetic tube (always another tube). My surgeon says this is like going from a carpet to tile. He also said my heart happens to be very close to my breastbone, so the valve is playing it like a drum.
On the bright side, loud beats dead - every day of the week. I suppose I will get use to the sound, but I'm sad that I will never experience silence again in my life, unless I lose all my hearing.
What happened in that 24 seconds?
I didn't see any bright light. I don't have any recollection of hovering over the medical team while they worked on me. I did not run into any deceased friends or family, not even Lewis Grizzard.
I was tempted to write one of those Five People You Meet in Heaven stories about how Lewis and I got drunk together and he explained the meaning of my life to me. I thought about it a lot, but just didn't think I could pull it off. First of all, Lewis would drink me right under the table. Secondly, I would not be able to resist telling him about how Florida has beaten Georgia almost every year since his death. He either wouldn't believe me or would be in too much of a huff to continue the conversation. He was a big Georgia Bulldog fan. Rumor has it that friends honored his request and spread his ashes on the field at Sanford Stadium.
What I do recall clearly is the monitor suddenly blasting an alarm, and just like on TV, the solid bright line replaced the peaks and valleys of my heart rhythm. Oddly enough, I don't recall being scared. I was very aware that people were running into my room from all directions. There was a lot of talking, but I did not understand any of it. The next thing I knew, Doctors were asking me questions, but I was having a hard time concentrating.
So I didn't come away with any insight about what happens when we cross that threshold. But I'm glad I didn't cross it just yet.
Friday, March 20, 2009
I have more company
Four Week Status
My restrictions were revised somewhat. I am now permitted to lift 15 pounds, up from 5. I am allowed to drive. They advised me to be very careful driving since an accident would be a disaster. A chest impact with an airbag, or steering wheel could cause some really bad things. I still cannot submerge my chest in water, so swimming is out.
They had two areas of concern, the first is my weight. I am not gaining weight even though I am eating quite well. The second area of concern was the possibility that some bacteria had managed to evade the antibiotics by laying low in some remote corner of my body. More blood was drawn - from each arm, just to be sure. At the 24 hour mark the culture was negative, but they will monitor it for 3 days just to be sure. I won't know until Monday, but it looks like the infection has not returned.
My next assessment is scheduled for April 3. If I things are progressing well, then I should be able to return home.
Warning - kind of disgusting stuff to follow.
Yesterday, was a really bad day for me. I felt terrible and all three of us were getting more and more fearful that the Endocarditis was back. By mid-afternoon, it seemed a trip to the emergency room was necessary. I dreaded this because I knew what I'd be in for. First they turn the thermostat down to 60, then they would make me change into the hospital gown, insert an IV, put an oxygen tube in my nose, and draw blood. Then they would go to work on me. I did not want to go but it looked inevitable. Dad was getting his keys and wallet, Mom was on the phone with the doctor when suddenly I started vomiting. Throwing up is never much fun, but with your chest still recovering from being sawed in half - vomiting is really unpleasant. I had no idea I could vomit this much stuff. Strangely enough, I felt better - I was weak as hell, but no longer sick. We concluded that I must have had food poisoning. I've mostly ate the same things as Mom & Dad and they were fine, but in my condition I was more susceptible. The doctor said to stay home and rest. I had a good night sleep, thanks to one of my magic pills. I woke up hungry and had bacon and eggs. I feel much better today. Unfortunately, the incident cost me 2 pounds and I'm now officially a skeleton.
Tuesday, March 17, 2009
Tubes
Since I was first diagnosed with Endocarditis the medical establishment has used about five miles of tubes on me. They use a tube attached to the needle when drawing blood and I've given enough blood to fill a bathtub. When I had my portable infusion pump for a month, the tube was changed daily. No one would dare reuse a tube that might have any of that nasty bacteria on it, so a perfectly good six foot tube went into the landfill every day. Don't get me wrong, I loved that portable infusion pump. It had not yet been developed when Lewis Grizzard was treated for Endocarditis so he spent a month in the hospital. I'll kiss the guy that invented that pump if I ever meet him.
But it is in open heart surgery where tubes really get used. Every person in the operating room, except the patient, brings a tube with them and forces it into an orifice. If there are no orifices left, then they create a new one. So when I woke up after surgery I had a tube down my throat, one in my nose, one in each arm, one in a new hole in my neck, two in new holes in my abdomen (drainage tubes they call these), and one someplace I'd rather not mention. Total of 8. Lewis had 15 tubes. Because his surgery ran so long, it overlapped shift change and all the new arrivals brought a tube with them.
The key getting to go home after surgery is to get all the tubes out.
The tube they had in a place I don't want to mention was there all because of Lewis. When he had his surgery in 1994, they must not have used that tube yet. Right there on page 174 of his book he quotes from his (very long) medical chronology, "peed on Dr. Martin's shoes." Since the incident made it into the medical history, some of the best minds in medicine went to work on the problem. After all, we couldn't have Guccis loafers being disrespected this way, and insurance companies were not going to reimburse the doctors. So a new tube was invented. With this new tube in place I couldn't have peed on my doctor's shoes even if I had wanted to, which I didn't.
I suppose it is possible that they did have this tube in Lewis, but it had already taken it out before he peed on his doctor's loafers, but I don't think that was the case. Medical rules say that the patient should be sedated when the tube is inserted (thank God for that) but must be wide awake whenever a tube is removed. I'm sure Lewis would have mentioned that tube removal if he'd been awake. It isn't the kind of thing one does not notice or is likely to forget. In my case, when that tube came out they heard me in the adjacent rooms. Later, when the nurse removed the drainage tubes from abdomen they heard me all the way down in the hospital kitchen. Did you ever see the movie Alien, when the alien bursts out through the guy's stomach. That is what it felt like when those drainage tubes were pulled out.
Poor Lewis had to endure one last tube - that's right the big one. Although he tried to keep it quiet for several days after his surgery, eventually he had to fess-up that he was bleeding during his bowel movements. That type of bleeding is very bad and doctors went to work to find the source of the bleeding. Poor Lewis could not be sedated because of his many complications, so he had to endure the whole undignified procedure wide awake. I really owe Lewis a debt of gratitude for this one. Heart surgeons now insist that patients have that procedure done ahead of time to ensure there is no post-operative bleeding. Unpleasant as it may be, having it done ahead of surgery is preferable to having it when you still have other tubes in you and you feel like hell. So mine was done a few weeks ahead of time and I was heavily sedated, even during tube removal - I don't know how they got away with that rule violation, but I'm not complaining.
So that's what I've learned about the medical profession. Tubes are big business.
Sunday, March 15, 2009
Joe
Lewis Grizzard often commented about how skinny he was. He claims to have been 160 pounds and 6' 1” tall. That's 3inches taller than me. Most of my adult life I've been just a shade under 150. I don't have data to back this up, but I suspect that Lewis and I are the two skinniest guys to ever have heart surgery. At least Lewis had a benefit to his defective valve – it kept him out of Vietnam.
One guy who has never been called skinny is my friend Joe Edenfield. Joe is on the other end of the spectrum. Two guys the size of Lewis and I could play cards behind Joe and no one would know we were there. Joe came by for a visit today. I don't think there is medicine any better than a long chat with an old friend on a warm day. I've known Joe since elementary school. In high school we were on the wrestling team together. Wrestlers compete in ascending order of weight class, I went first – Joe last. Joe said that if Endocarditis had attacked him his body would have assumed the bacteria was calories and he would have gained 40 pounds.
In 7th grade gym class the coach had us get into two lines and run the 50-yard-dash. Seeing that I was lined-up beside Joe, I figured I had an easy win. To my surprise I learned that some big guys can be quite explosive and move pretty fast over a short distance. I spent the rest of that day and most of the next being taunted by classmates. I had been beaten by the guy the gym teacher had nicknamed – Harpoon. The night before my brother David's 2005 wedding a group of old friends were drinking beer and smoking cigars. I challenged Joe to a rematch of that race 33 years ago. I'm pretty sure I could have taken him. Fortunately, Joe's too smart (and the most sober one there) so we didn't end up making fools of ourselves that night.
In school the fat kids get taunted mercilessly. I don't know how, but Joe always kept his cool. Well except for one incident when a classmate got a well deserved swirly in the boys room, Joe got the best kind of revenge, he ignored the taunters, accepted what genetics had dealt him, and went on to live an exemplary life. He's a successful IT professional with a lovely wife and family. I admire him and glad to call him a friend. Although, I was disappointed that today I was unable to accept his challenge to rerun the 50-yard-dash.
My point in all this is that a few months ago no one looking at the two of us would have believed that Joe would be visiting me after heart surgery, the other way around would have seemed more likely. I could let myself get depressed and ask, why me? But I'd rather follow Joe's example. Genetics set me up with that defective valve, the bacteria did the dirty work. It was all just a roll of the dice. I hope I handle my setback with the same attitude Joe always has.
Space Shuttle
I did not know if I would ever have the chance to see a launch again. I've seen about 10. The last one I saw a launch it was the ill-fated Challenger that exploded 23 years ago. At that time I was living in Melbourne, Florida about 25 miles south of the cape. (by coincidence, I've also lived in Melbourne, Australia.) My co-workers and I left the office to watch the launch from the building parking lot. The explosion left a great cloud of smoke that remained in the sky the rest of that cold day.
Today's launch was perfect. I'm glad that I lived to see it and that I won't any longer say that the last time I saw the shuttle launch it exploded. Well done NASA!
Saturday, March 14, 2009
Lewis's Finger
Knowing that without his favorite finger, completing his book would be nearly impossible, Lewis wrote furiously. In spite of his terrible condition, abandoning the book was not an option since Lewis had already spent his advance check. So he typed furiously and completed the book before losing his finger. As we know the finger proved to be a minor consideration since Lewis would be dead in less than a year. Incidentally, that typewriter is now on exhibit at the Lewis Grizzard museum in his hometown of Moreland, Georgia.
I have a sore left pinky for reasons I can't explain, but it looks normal and I'm pretty sure it won't fall off. Thankfully, no clots damaged any of my appendages. But without the deadline of a book to publish or a finger in imminent danger I'm not banging out the words at anywhere near Lewis's pace.
I have kicked the narcotic pain killers. Thank God for those little pills. Surgeons split my chest wide open, fiddled around up to their elbow for seven hours, then two days later slit my chest open again to slip in a device the size of a pocket watch. This left me sore as hell. I bet even John Wayne would have been ornery. Being hit by a train may have been less painful. But those magic little pills kept the pain at bay. They also called my name from the other room. I could hear the bottle saying “Ken – time for another dose.” My little pills kept me sleeping without too much discomfort, but my brain function was bordering on stupid. I can see how people get addicted to these things – not to mention any names, but a prominent radio talk show host comes to mind.
Lewis was proud of his crossword puzzle skills. His surgery disaster deprived his brain of oxygenated blood for an extended time. He emerged with his writing ability in tact, but he could no longer solve a crossword puzzle. I was never very good at crossword puzzles, but I can do a Sudoku pretty fast. To test my intellectual skills I've done several and I'm glad to report that at least that part of my intellectual ability still works. I also spent a few minutes on my 2008 tax return today – only to find out I am way too stupid to understand our tax forms. But I'm pretty sure that was the case before the surgery. You would think they would throw in an accountant to do your taxes for you when you have open-heart surgery. That should be part of the deal.
The incision on my chest no longer aches, but is sensitive as hell to touch. I'm able to walk and ride the stationary bike at a slow pace. The idea or running is still off in the future. While on my walks around the block I hope no one needs to be rescued from a burning house since I'm not physically up to it. I was physically up to a trip to Olive Garden today where I gorged on pasta, alas I didn't help me gain any weight. More on that later.
Sunday, March 8, 2009
A minor setback, but I'm better now
Friday evening I was not feeling well and my left arm was in a lot of pain. Left arm pain is a symptom of heart attack. My left arm had swollen during surgery and had a small blood clot in the days after surgery. But the swelling had gone away at least a week ago. As instructed I called the doctor and his advise was to get into the emergency room. Dad was dressed and had the car started in about 3 minutes. My heart was checked out, first by the emergency room doctor, then by two members of the cardiology team who were called in. Thank God, there was no heart issues. They kept me under observation for five hours just to make sure nothing was wrong. Needless to say Dad and I got almost no sleep, but we still felt that the doctor was right to tell me to go in.
So the mystery of the left arm pain remains, but when I woke up today the pain was gone. Tomorrow the doctors want to check me out again. On the positive side, the weather today was beautiful, Mom and I had a couple of pretty long walks, and I had two good sessions on the stationary bike.
Friday, March 6, 2009
Lewis Grizzard and I have company
Robin Williams is due to have Aortic Valve Replacement Surgery. It sounds like he has the more common problem of the valve wearing down over time, as opposed to the bacterial assault that infected Lewis Grizzard and me. If a sense of humor will help get you through it then who could be expected to have a better outcome than Robin Williams. On second thought, it didn't do Lewis much good. So who knows.
Former first lady Barbara Bush also had her aortic valve replaced this week. She is 83. She has my respect if she can handle it at that age.
If more people start having heart surgery, maybe that vertical scar down the center of the chest will become fashionable. One day people may ask me if it is real of if I just had a tattoo to make it look like I had a cool surgery. Of course, I can also show off the horizontal scar where the pacemaker went in.
Wednesday, March 4, 2009
Food
I'm very lucky that Mom cooks it the proper southern way. In fact, her only serious rival was my late Grandmother. Mom made cornbread tonight and also sauteed some vegetables. Dad grilled Salmon outside to absolute perfection. Something about the combination was magical. It was the first time since the surgery that food tasted good. I mean really good.
Anyone who knows me knows I like to eat. I also get hunger pains earlier than anyone else. An accident of genetics gives me the ability to eat all I want and never gain any weight. It also means I burn up whatever I eat and so I can't go very long without eating. Between the surgery and the medications I'm on, I have not felt hungry or enjoyed food much at all. Mostly, I only ate because I knew it was time to. Until now, fresh fruit was the only thing that tasted really good. Tonight that changed. I really enjoyed my dinner.
The infection caused me to lose about 15 pounds off my normal weight. Normal for me being very skinny to start with. I gained about half of that back between the time the infection was treated and the surgery. Since the surgery I lost it all back. Hopefully, today signals the start of some serious eating! I really need to put on some pounds.
Hey Mom, What's for dessert?
Tuesday, March 3, 2009
The Two Week Mark
Dad took a photo of me with my shirt off, showing my scar. I'm not sure if I feel worse or look worse. I thought about posting it, but it is a frightening site, so I decided to wait on that. I know that a few months from now it will be a source of pride that I worked my way back from such a low point.
I've been able to walk pretty well since coming home. I usually have two walks a day around the neighborhood. Mom usually goes with me, but Dad does sometimes. On Friday Dad gave me a special treat. We drove to the beach and walked. It felt so good, but I was beat afterward. Sunday I found out just how far I have to go on my recovery. I got on the stationary bike for about 4 minutes and I was spent. The next fifteen minutes - I coughed. My lungs clearly need lots of work. Saturday also brought back an old nemesis, lower back pain. All those days of laying in bed and sitting in the chair agravated an old nerve that I have worked hard to put at bay over the years. Unfortunately, I can't do my normal yoga and swimming routines that keep my back in shape. Dad has been helping me stretch as much as possible and it is helping.
Monday was a better day. I was able to stretch out my back and reduce the pain, I also had a much better time on the bike. Today I had two good sessions on the bike. I have strict instructions not to let my heart rate exceed 130 beats per minute. I've been able to go about 20 minutes on the bike at a slow pace and keep the heart rate around 120 beats. They tell me this is good progress. Even though it is hard, I need to be on that bike at least twice a day. Maybe it will be a little easier when Florida weather returns later this week. It has been unusually cold.
I'm slowly getting used to my "bionic" heart valve. When it is quiet I hear it beating, like having a ticking clock in the room. They tell me that over time my brain will filter it out. Sometimes it gets on my nerves, but it also reminds me - "Hey Ken - you are alive!"
Wednesday, February 25, 2009
My Dad
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.
Tuesday, February 24, 2009
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.
Saturday, February 21, 2009
Better day today
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
Friday, February 20, 2009
Scared to Death!!
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 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.
Wednesday, February 18, 2009
Ken is much better!
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
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