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Bicuspid aortic heart valve
The Patient's Guide
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I HIT MY GOAL!!Just checked and I have 100 subscribers to my journal now! I reached my goal, now I can quit.
Week 12 of recovery.Just noticed that I've got 98 subscribers to my journal now. I've almost reached my goal of 100.
The return of Brian.Low and behold, Brian made it back to the house for Monday night football. Yay! He picked up some food coming over--- chicken, salad, mac and cheese, and some ice cream and pie for desert. He picked up Vanilla Bean, Sweet Chocolate, and Pumpkin Pie. We usually only have two strippers over on football night, but Pumpkin Pie wanted to come along too.
10 weeks post-op.Started cardiac rehab this week and went twice. They have me doing 40 minutes on the treadmill at 3.5 speed. I feel fine and the only thing slowing me down is sore tendons from many sprained ankles, so I have to stop and stretch them after about 10 minutes. Since I have a bovine valve, they usually hold up a red cape in front of me for incentive to keep me going.
Feel great, until I sneeze.No real pains. Feeling good. Walking well. Then I sneeze and I'm reminded real quickly that the old sternum has a bit more healing to do.
Starting cardiac rehab.Went into the hospital yesterday to start cardiac rehab, and all they had me do was fill out paperwork and answer health and body questions. They are going to have me come 15 times or so, twice a week. So, no workout. I already had my sweats on, so I just swung by the gym on the way home and walked 3 miles on the treadmill.
I've been bad.I know. I haven't been updating my journal much lately. Last week I didn't feel like doing much of anything. Hardly left the house, didn't do bills, didn't hardly exercise (and I was really kicking ass the week before). I didn't really feel down, so I don't think I was depressed, but I just couldn't get motivated to do ANYTHING. It was almost like I WAS depressed, but without being in a funk. I blame it on the Dallas Cowboys. (Hey, I can't blame myself!)
Will miracles never cease?Romo pulled out a comeback win for the Dallas Cowboys this weekend!!! Holy cr@p!!
Had a BLAST last night! Twice.Diarrhea. No fun. Hope I'm not getting sick. Woke up this morning feeling a little tired, so hard to tell if it was a stomach bug, or something else. Maybe snacked on too much Halloween candy.
Good news and bad news.The good news: Got back the results of the kidney ultrasound.
A good weekend.My friend Dave(Squid) flew in this weekend and stayed with me Friday through Monday. We went to a couple of Tiki events this weekend and got to see a bunch of friends I hadn't seen since before I had surgery. It was great seeing people's reactions when they were surprised to see me, and when they were even more surprised when they realized Squid was there too, because it's been a year or two since he's been here.
6 weeks post up last Wednesday.Feeling good. Walked four miles on the treadmill at the gymn Thursday night and averaged about 16 minute miles. I'm walking better now than I was just before surgery. Woohoo!
Doctor's appointment yesterday.Peed in a cup, and doctor said no blood in urine.
Still tired early in the day.I don't think I'm sleeping well at night, and usually nap during the day because I'm tired. Before surgery---hookers and lots of alcohol and I slept through the night, no problem. Do you think 5 weeks post op is too early to start binging again?
Week 5 todayStill feeling a bit tired during the day, and have to nap.
Phlebitis.Saturday I felt a lump in my arm and when I looked down it was in the vein that my IV catheter had been in. The whole vein in my forearm is lumpy and hard, but doesn't hurt and it's not red.
4 weeks post op today.Still continuing roller coaster recovery, but the highs and lows are little less extreme right now.
Back on track.Last couple of days have been really good. LOTS of walking. Feeling less bloated. Ate better yesterday than I have in a while. Good nap during the day. Good burping, farting and pooping, so things are moving through well.
Today was 3 week anniversary of OHS (added some photos, too)My roommate Dan and I took my Mom to the airport at 5:30 this morning. She didn't fly out until 3:00 PM, but we just couldn't wait any longer to get her out of the house. (I kid, I kid. I love Mom!) She called this evening and said she got home fine. I was feeling much better today, so Mom was relieved that she left and I was feeling better. Thanks for all the help and for putting up with me, Mom. The neighbors miss you already. The medical marijuana store and the liquor store miss you more.
It's been a rough ride, lately.After I went to the hospital for Dressler's Syndrome (a form of Pericarditis) at the end of last week, it's been some rough days since then. I think some of that has been because of meds. I felt like I had hangover for several days after they gave me Dilaudid at the Emergency Room. Nauseous, bloated/full feeling in my belly, so didn't eat much. My head was fuzzy. I felt wiped-out a lot of the time. A few days, my eyelids just felt so heavy, it was hard to keep them open. One day I had a weird, piercing head ache that lasted a good part of the morning. My neighbor has been complaining of allergies. I've been sneezing several times a day, so I may have developed some allergies in my older age that I hadn't noticed before.
Big confession to heart valve patients.It's not my fault, but I had been lead astray. The doctors had told me I had a bicuspid aortic valve, and that was not true. The heart surgeon told me that once he got in there, I did have a tricuspid aortic valve, it was just SO calcified that two leaflets were stuck together and the valve was acting like a bicuspid aortic valve. I am embarrassed that I mislead you all, and now I'll have to change "My Story" part of the journal. I'm not sure that there is a way to change the "My Diagnosis" part, so if not, it may still say Bicuspid aortic valve even though that was not the case. Again, I apologize and hope the heart valve community can forgive me for what was ultimately not my fault, because I had been given the wrong information. Goes to show that you never know EXACTLY what they are going to find until they open you up.
Roller coaster ride took a big dip yesterday.Yesterday I woke up and couldn't really catch my breath. SUPER EXTREMELY TIRED and WIPED-OUT. Felt like I'd been hit by a truck. Pain in my left side under my rib cage wouldn't let me take a deep breath. Spirometer numbers were terrible. Tried to walk a little, but had to stop like 6 o7 times to catch my breath just for trip to end of block and back. Felt so bloated I only ate one small yogurt all day. Called the cardiologist. At 6pm he returned my call and told me to go the the hospital to make sure it's not a blood clot in the lung. I guess it wasn't a pulled muscle in my side after all.
Dr. visits and pulled a muscle.My friend Shannon took me and Mom to the heart surgeon's office yesterday and he said I was "solid" and looked really good. I only took one vicodin early in the day, so it got a bit rough later in the day. Thanks for the ride Shannon.
Tough day yesterday.Felt WIPED-OUT all day yesterday. Also, bloated feeling, cramps in my back, chills. Not sure if i over did it the day before or if it's from cutting way back on vicodin (or both).
Back to my original weight!!I weighed 191lbs. today which is what I weighed the day of my surgery, And that's even with eating chocolate birthday cake just about every day. Woohoo!
Lots of sleep. Woohoo!!Massage was great yesterday. Slept a WHOLE lot last night and a good nap today. It was a good day.
HOLY MACKEREL! Nearly slept 8 hours last night!So wiped out from the previous night's lack of sleep, I made up for it last night with nearly eight hours of sleep!!
You guys are going to kill me!!I just checked and I have nearly 6 pages of guestbook entries I need to respond to!! Hopefully tomorrow I'll have enough energy and enough alone time to get after it.
I got close to death today.Mom drove me to run a few errands in town. The scariest five mile trip I've ever traveled.
Sleep. My new best friend. Plus, one week anniversary.(Yesterday's entry was after 12:00AM, so that's why tonight's entry is also Sept. 18.)
Dreaded sleep!Today was first full day home from the hospital.
Ernie A.S. (After Surgery)Got home about 3pm today. Totally wiped out. Tough last two days. Can't sleep well because I breathe too shallow and and wake myself up trying to breathe. Using the hell out of the spirometer. Think it might be from sleeping position and usually around time for pain meds.
One More DayErnie will be staying through Sunday at the hospital. He was given the option of going home, but he felt it was better if he stayed overnight once more. So, he should be going home on Monday.(He told me to be serious this time, so no jokes.)
ProgressErnie says there is a good chance he will be released tomorrow, Sunday. His earlier two walks around the hallways were good and planning one more tonight with Dan.
"It's Alive!!"Grog is on the hunt for some delectable nurses!! chasing them, very, very slowly, down the halls. Sad to see grown women walking for their lives!!
eatingErn is now eating real food and happy that it doesn't seem to get stuck halfway down. currently watching him chow down on sandwich, soup, and a lemon bar. hasn't gone walking yet today.
Ernie Updatefirst BM on 9/14 at 3am. Second BM today at 10am. Bathed and brushed teeth. Sitting in a chair using my spirometer (for lungs). No P.T. yet. All tubes out. Second chest tube out this morning. thanks for the well wishes, cards, calls, etc. Good visits from Dan Bond, Mom (all day), Steven and Julia, Ron Hughart, Lance Kramer, Lori and Ryuichi. Feeling the love from friends and family.
Sitting with Erniebright and early Saturday morning and visiting Ern. he is off all tubes and grumbling about pain. we knew where he was by following the coughing. he's trying to keep his airway clear. We checked out the zipper on the chest. it looked really nice and neat. not as scary as our Dad1s open heart surgery in the 80's.
Sept. 13 (friday)morning walk was good waved hands and wiggled butt at nurses as he cruised the halls. afternoon not as good. got the shivers and dizziness for a while. i think it was from the nurses rebuffing his passes.he denies this and says "it was a bad afternoon." in all seriousness, recovery is coming along but Ernie being Ernie wishes everything was smooth sailing.
Thank youOops, forgot to pass along Ernie's first command to me.
Posting for ErnieHe speaks! I talked to Ernie (by phone) today and, knowing he is doped up, used my cunning and slyly pried his journal password from him! I have taken over (bwahaahaa). He and Toro are getting along with each other but that bull has really gored his chest and left a sore scar! In all seriousness though, Ernie is speaking, walking around the room some, and making pathetic passes at the nurses. He is out of ICU and in a private room now. Everything is going well. Mom says he should be walking the hall tomorrow.
Readying for tomorrow.No time to answer guestbook. Thanks everybody for the love.
The day before surgery.Tomorrow I go under the knife.
Just did a marathon!A marathon of guestbook replies. Holy mackerel! Everybody did a mass guestbook signing and i had to bust my butt to reply. Are you guys trying to kill me or what? You know I only type with two fingers, right? I'm not kidding.
What the hell happened?!All of a sudden I had a million people sign my guestbook yesterday. Did this website send out an email saying I was dying or something? I appreciate everybody stopping in and leaving me a note. Love you guys and gals!
New countdown has begun. 9 days 'til surgery.Sounds like the other recent heart patients are doing well and getting ready to go home and recover, and those already home, recovering are doing well too. So that's great news and very encouraging. You guys rock!
This weeks heart valve patients.Good luck to those of you going into surgery this week (Rebecca, Cindy, Aubrey) and those who are recovering. Sorry I'm not in there this week with you like I thought I would be. Starting my countdown all over again.
Postponed. Damned cold!Went to the hospital this morning for chest x-ray, got more blood drawn, and did some pulmonary function stuff. Met with the pre-admission nurse to go over medical history, medicines, etc. and she was concerned about me still having a cough and the sniffles. The heart surgeon was there doing surgery that day, so I met with him later. He wanted to make sure I was 100% healthy before surgery, so the NEW date for open heart surgery for me is SEPTEMBER 11, the day before my 50th birthday. I feel bad that Mom's going to have to stay out here longer now. So there goes my liquor supply. But at least I have more time to find a recliner.
No Tiki bar tonight.Mom found my stash of alcohol here at the house and got blitzed, so couldn't go to the bar because I had to stay at the house and make sure Mom didn't trash the place like a rock star at a hotel.
Almost found my perfect recliner today.Feeling better today, so I think I'm getting over the cold.I might swing by the Tonga Hut (tiki bar in North Hollywood) tomorrow night to support some friends joining the Loyal Order of the Drooling Bastard.(You have a year to finish all 78 drinks from the drink book THE GROG LOG.) Maybe alcohol will kill off the last of that darned cold bug. I was thinking about taking Mom to meet some of my friends, but she can be such an angry drunk and I'm not sure I can keep her from drinking too much and starting a brawl.
Oh no! Caught a cold!Came back from San Diego this weekend and promptly got sick. I thought it was just post-nasal drip the first few days, but felt pretty wiped-out today, and realized it was a cold. Hopefully I can kick it over the weekend, and I won't have to postpone surgery.
Hope I survive until surgery next week.Was cleaning house yesterday and had spilled a little water on the linoleum by the front door. I was carrying a container of dirty water to dump outside and stepped on the wet patch and I went down HARD. Somehow I didn't break my neck, but I jammed my little toe pretty good. I was barefooted. (OK, I was naked---I was reliving my days when I worked at a company as a male stripper and cleaned women's houses in the buff.) Last night the toe was all swollen and looked like it was going to turn pretty black and blue, but I iced it pretty well and it doesn't look so bad this morning. I don't think it's broken, but yesterday I wasn't so sure. I spilled dirty water all over the linoleum when I went down, but thankfully, I hadn't mopped there yet, so at least THAT worked out.
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The COWntdown to my new bovine valve has begun.It's Monday and in less than 10 days I'm heading to the veterinarian's office and Dr. Fred E. Krueger is gonna slice me open and put in some cow parts. Hey,I'm already bullheaded and have a pair of calves, so might as well keep with the cow motif.
Weekend of drunken debauchery.Off to San Diego tomorrow for Tiki Oasis. If I live through this weekend, then comparatively, open heart surgery should be a cake walk.
Aug. 28th! So much to do, so little time.Got a list of things I want and need to get done before surgery. Naps are not on the list, but keep getting priority when they come up (just about every day),which is slowing things down getting the list of things completed. Some things on the list I need to get done before Mom gets here, but some we can do together when she's here like shop for pillows and comfy clothes, like sweats. I've already got a blood pressure cuff, but I do need a good thermometer. Preferably one that doesn't go into orifices in the southern hemisphere. And, I think I'll look into renting a recliner rather than buying one.
Got a date! (Oh, and surgery is scheduled, too.)
Excruciating pain today.Worst BRAIN FREEZE ever!!!!! Made a banana smoothie earlier today and drank it too quickly.
Now just need a date for Open Heart Surgery.I've got my heart valve decided upon. I think I'll call it "Toro". I'll be "strong like bull" afterwards.
Picking the type of valveI'll try to keep this short, since some of posts are pretty long.
Questions for the Heart Surgeon(I indent my paragraphs, but when I post, the website gets rid of the indentions, so sorry if it's been a bit harder to read. I'll just make a space instead of an indention)
Interview/consult with heart surgeon yesterday.Yesterday's report (which you probably didn't get until today, because it was almost midnight when I posted it) was pretty typical of California traffic. It seems like the worse you drive, the easier it is to get a driver's license out here. I dropped off my car yesterday morning for the bumper to be repaired and that was from being rear-ended in stopped traffic! I didn't see the kid (25 yr old or so) until after he he hit my car, but he was probabaly texting on his phone (which is illegal in California) and rolled into me because it was a really low-impact hit. Half the time I was at the collision-repair was spent signing and dating paperwork.
I Nearly died yesterday!Yesterday I went to the Hospital where I had the angiogram done and I got a copy of my CT scan to take with me today to see the heart surgeon.
National Ice Cream Day today!!In 1984 Ronald Reagan declared July national Ice cream Month and the third Sunday of July is National Ice Cream Day. So I'm going to be sure and perform my civic duty today and have some ice cream. Guilt free.
My Rebirth DayMy friend Tammy signed my guestbook, and she asked , "Are we getting old or what?" And this was my response:
Stampeding forward like a herd of turtles!!Seems like I'm blasting forward at a snail's pace, but it's probably for the best (hopefully). I guess it's better to be slow and diligent, make sure to cross-the-eyes and dot the tease, and make sure all bases are covered.
Cardiologist appointment on Wednesday.Hopefully after Wednesday's meeting with the cardiologist I'll have a better idea of a supposed time frame for my operation. I need to make a list of questions I need to ask, so I don't forget anything. Because of the decreased size of the aortic valve opening, my heart isn't as efficient at pumping enough oxygenated blood to my brain, so only two or three of my remaining five brain cells are ever firing at one time. (Hey THAT'S a valid excuse!)
Doing what I do best.Taking it easy today. Went to bed last night at 12:30am and woke at 7am. Then I took a nap from 10am to 2pm, so got lots of rest.
bruised groinI talked to the cardiologist on the phone yesterday, and asked him about the amount of bruising around the bandage, and he said that was to be expected. He said I should feel a "pea-sized lump" under the skin, but I told him I hadn't removed the bandage yet. That evening when I took the bandage off and washed the area, the bruising UNDER the bandage was less than I expected. But, it felt like there was a significantly larger than pea-sized bulge under the skin, which made me worried. Thinking it's better safe than sorry, I called the hospital where I got the heart catherization and talked to an ER nurse. I told her I had a swelling in my groin area and she called me a pervert. When I explained that I'd had an angiogram the previous day and described the size of the swelling, she said it was normal.
Day after Angie Oh.Bruising looks about the same this morning, so I'm not so worried.
Angiogram went wellDon't know if I slept through my alarm or if it needs new batteries, but I checked and it was set properly. Thankfully my roommate knocked on my door and got me going, so he dropped me off at the hospital pretty much on time.
Meeting Angie O' Graham tomorrow.The cardiologist wants me to meet some lady named Angie O' Graham tomorrow (my friend, Ron's joke).
The BIGGEST question I get asked most often is......"When is your heart surgery?"
Gonna fix my broken heart--starting with angiogram July11thI'm 49 year old male with a bicuspid aortic heart valve and bald. One condition can be treated, the other is beyond repair.
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