Today finds Bobby traveling to the Anschutz for the 3 month checkup with the pulmonologist. It's rather creepy for him, because of the three month checkup interval. HPS is very often progressive, and fatal, and sometimes a liver transplant is either not an option, or the transplant can take up to a year to clear up the vasodilations in the lungs. He has had a lot more headaches, including right now while he's typing this for me, but on a brighter note, he finally captures a coveted "Rweee"session from the kitten. BY STRAPPING THE VIDEO CAMERA TO HAS HAND AT BEDTIME LAST NIGHT! HA! this time he was ready and waiting for Sachi, the camera shy kitten. Slinky, beaniebaby-ish, and feathery soft, and most of all, camera shy. If he sees the camera, *POOF*, away goes the rweee and he slinks away silently. So, click below, and enjoy. P.S. Bobby has a lot of trouble with videos playing in this browser, and others say they have a hard time too, so--- if the video bogs down and wont play, just click on the video in the middle to have it take you straight to you tube, and if that doesn't work, click on robwalkingeagle's channel, and look for it there, and get a clean link. If any one knows why we have these problems with playing videos here please comment. Enjoy.
If I were running for office, here's what I would say. As an active member of my party , I am a firm believer in Hepatocracy. That is, the hepatistic values of the Livertarian party have been kept, and held sacred. Once our values are allowed to be corrupted, then all is lost. Hepaticism is a valuable , and ancient belief. In ancient Greece, Hippocrates believed in it. The ancient Chinese knew how important a role the liver played in the total human experience. Later, in Europe, Laennec carried on the traditions of hepatocracy. Here, in Bobby's abdomen, let me just say, that because of the perseverance, and endurance of the party's values, this struggle is being waged from all sides. You've heard the saying "We hold these truths to be self evident that all men were created equal." But do you believe that all men's livers were created equal? If you believe that, then you are indeed gullible. In here, the politics of gastroenterology is a deadly struggle, a life and death FIGHT to survive despite all that stands in our way. You think you've seen corruption? You think you've seen inequality? Let me tell you something about inequality, when a kidney has to fight to survive despite it's big- fat- owner not having the smarts or self control to push the plate away, or go for a walk, or join a gym. NO, in here we, the organs of your body have to do everything we can to survive despite being genically predisposed to certain diseases, and the constant onslaught of life itself. A tax hike wont cut it in here, nor will tax cuts. Blood and guts isn't an R movie rating in here, it's reality. It's the truth. But you cant handle the truth!! SO YOU GO AHEAD AND EAT YOUR CAPTAIN CRUNCH AND DRINK THAT PEPSI AND VODKA FOR BREAKFAST, AND SLAM THOSE BEERS WITH YOUR CHICHARORON BURRITOS AND YOU IGNORRRRR YOURRRRR CHOLESTOROL READINGGGGGGSS FROMMMM YOURRR LASSSSST PHYSICALLLLL AND EEEEEEEEYYYYYYYAAAAAAAAAAAAAAAAAAAAAAAAA...
Two years ago yesterday, Bobby kissed Sharon bye, grabbed his keys and headed out the door. He was on his way up to Golden, to Mount Olivet cemetery. He stopped on his way at a convenience store for a can of beer and a pack of smokes. Back then beer was not available on Sunday, except the watered down version, 3.2 beer, because of blue laws, or unless you went to the bar. Bobby and Sharon live one block from a bar, but he never took advantage of it. Only an alcoholic would do that. He bought a pack of cigarettes, and a 24 ounce can of Budweiser. The clerk handed him his change, and he wheeled out the door, the cemetery being only a couple of blocks west. He had taken his fishing chair with him, and expected to stay awhile. He dismounted from the truck, the cemetery was vacant. He could not see anybody else, it being Labor day weekend, and a Sunday, the sun was warm, but not too hot, and the sky had an autumn feel to it. . The fresh sod on her grave was taking hold now, and the fishing chair sunk in because the grass being overwatered. He adjusted it, and managed to stop sinking. He had already lost 50 pounds, The pain had changed in intensity over the last month, he had been trying to drown his emotional pain, but it increased his physical pain. That weekend, he had not drank any beer, unheard of for labor day weekend . He had been telling Sharon that he was close to quitting. Ardis dying had convinced him to. He didn't want to die like her. A year prior, his brother had questioned him at the request of Sharon, about weather he though he had a drinking problem or not. He had come up with a logical explanation to Jeff as to why he did not have a drinking problem. People who have problems cannot switch to 3.2 on Bronco game Sunday at dad's house, and they can't ever stop at one or two. Bobby had started buying 3.2 for the bronco game since becoming very very drunk during the Denver bronco's loss to the Jacksonville Jaguars a few years back, and enduring a lecture from his father. He was embarrassed, so he made it a point to never take regular beer over there again. But lately, even 3.2 beer was getting him very drunk, and he marveled at how amazing that was. So, he cracked this ice cold can of Bud, lit a smoke, and inhaled, and as he let out the smoke, he told himself to really take it in, the feeling. The taste. This was an experiment to really contemplate life and death. A taste test, if you will. Sitting here on Ardis' grave, pissed at almost everyone he knew because of his perception that no one really knew how much her death had destroyed him, he drank. He smoked. He knew that his liver was very sick. So far the doctors were all being fooled into thinking that I was fine, but Bobby knew better. Today, he enjoyed this feeling, and most of all, this taste. He had a saying back in his 20's that a cold beer, and a Marlboro were life's end all beat all, and that he wanted them as a dying wish. But today, he knew he would have to choose. If he chose the beer, he knew he would be giving up Sharon, but every time he had asked her if she was at the end of her rope, she just patiently said"not today, hun". She had been so patient in the weeks following Ardis death, especially since he was on a bender and he had never done this before. He was completely out of control. Like a car coming down a mountain with no brakes. He knew that choosing the beer meant choosing death. He gathered his cigarette butts, his empty can, and paper bag, and sat in the bed of the truck for awhile. The equivalent of two cans of beer never used to have this effect, but he didn't feel safe to drive, so he waited. He waited the prescribed amount of time required by law. More proof of not being an alcoholic. When he got home, he didn't have any thing more to drink the rest of the night. Yet more proof. The next day after work, he bought another 15 pack of beer. He just wasn't done quite yet. Rock bottom loomed just 7 days away.
these are Bobby's grandfathers in the form of red blood cells (click to enlarge)
Bobby started having breathing problems years ago when he was hospitalized for shortness of breath and chest pain in 2003. His primary care doc was not surprised when her office was notified that he had been transported by an ambulance to a local hospital on valentines day. Sharon had been recently diagnosed with a host of problems and was on a wild roller coaster ride, trying to come up with a suitable treatment, and it would be almost a year before she found a good doc, and he got her somewhat stable. Now, after 3 different sleep studies, a pulmonary function test and a shunt study, he has hepatopulmonary syndrome. It is thought to be mild. But there is the key word. Mild. Mild has been the hallmark of this wildride from the git go. Don't ,whatever you do develop a severe case of this stuff or you might die of frustration. Mild is good for now. Mild means he cannot qualify for MELD exception points. The hitch is, that if it becomes worse, he will no longer be a candidate for a transplant, because HPS carries a poor prognosis after it progresses, and it is a progressive condition not dependent on the severity of the underlying disease. That means it can get worse even if the liver disease does not. Because it is thought to be a result of chemicals responsible for dilating blood vessels, it can just keep getting worse and worse. The red blood cells cannot reach the oxygen because the blood vessel is now too big around, and the blood is now going too fast. That is how the doctor explained it. He feels himself suffocating at times, even with his oxygen turned on, and he told De Wippersnapper pulmonologist that he didnt care if they say it's considered mild on paper, he cant breath. His chest pain started to ease a bit after being on the oxygen for a while, thank God, but there are still times he will wake with chest pain. The restaurant up the street, Casa del Rey, has green chili in three heats, Mild, Medium and Hot. Only there, the mild aint so mild either. And mild rhymes with wild, and beguiled.
This is the basement at what was called UCDHSC. It was the university of Colorado at Denver health sciences center. This photo was taken when Ardis was an inpatient there in July 06, Bobby swiped a chair from transport, put her room number on it, and her name, and wheeled her around the hospital during the long 4th of July holiday of 06. They put a hundred miles on that chair. The 4th was on a Tuesday, she had came by ambulance on Friday before, and the hospital was a deserted place until much later the following week. There is something about this hallway that brings about the strangest deja vu. It used to be called Colorado General hospital. Sharon's mother did a stint here as an RN in 1957, and Bobby had surgery there as an infant to create tear ducts. He was born without them. He had a separate surgery to correct crossed eyes at two or three years old. Bobby can remember this hallway amazingly, because he was 9 months old for the first surgery, two years old for the second. That would be January 1964. The hospital is gone now , moved to the campus of what used to be Fitsimmons Army medical center, in Aurora Colo., and is housed in the new Anschutz inpatient pavillion, a state of the art facility. But he can remember this hallway. It's kinda freaky, but it's gone now. Anschutz
Solitary plasmacytoma is a large solitary focus of plasma cell proliferation.
This tumor has a median patient age of approximately 10 years younger than multiple myeloma.
Pain is the most common symptom. However, if the myeloma occurs in the spine, it will usually present with fast developing paraplegia and gibbous deformity due to the vertebral collapse.
Liver Animation
Portal Lobule- amazing science
Wildride---
WildRide-
F.A Q.
About me- Billybob
A Liver. A crazy, wacky liver. Living with my share of scars, but who doesn't? I don't want to bore you with all that, not when there's bone tumors, and De Quervain's tenosinovitis, not to mention this runaway arthritis stuff. Compared to all that, it seems like we have it not too bad down here in liverland.
Symptoms of Cirrhois of the liver-Billybob's troublesome condition
This is 'Not Billybob'- (bobby) where Billybob lives
Not feeling my best these days.
The Architecture of the Liver
The rib tumor
lytic lesion of the anterolateral left seventh rib
You'd think that 25 radiation treatments wouldn't amount to much of anything. It doesn't sound like a lot.
...25 trips to the hospital. We were wrong. We started the week before Thanksgiving after a month long delay because of a bad bad flu like cold I developed. They wanted a commitment, with as few absences as possible, so we waited. The coughing up blood and fevers subsided, then we started, and got our groove. I say WE because Notbillybob's wife, Sharon drove most days. I was just along for the ride. Well, after 10 treatments, the tiredness set in. Especially for her. Like a new part time job. Notbillybob feeling like a roast ham most days. Kind of like a sun burn inside your guts. He made a big mistake in eating jalapenos one night. Ooh, the burn. So, they asked the doc if the stomach was getting radiation. They said "lets pull up your treatment plan... Yes, see here, inside this red line. The treatment plan showed that it was. The innermost red line is the most radiation, the outer one is the least. The green one is in the middle. A good part of the stomach is even inside the blue line.
The pain was accounted for. They told us that they were also concerned with his platelet count. It was going down again. Down to 37! (Low is 150) It has since stabilized at 40. The thing is that the white cells, red cells, hematocrit are all low. Way low. Bilirubin is elevated. INR is elevated. Not billybob began wearing a mask to treatments. Don't need cooties at a time like this.
Then the really cold weather set in. I know, I know- it doesn't really cause colds and "death of pneumonia" like our moms used to say, but when you have cancer of the immune cells, and then your white cell count goes in the toilet as well...
Notbillybob is going to stay a hermit for the foreseeable future.
But SMILE!
New Years eve was treatment number 25. Graduation day! Graduation from LINAC U!
(LINAC is a Linear Accelerator, an IMRT radiation therapy machine)
The creator of Theme Planet is Michael Sorrmann, one of the world's finest digital artists. Bobby fell in love with this short film during endless Google searches for roller coaster tracks, and a way to describe the " wild ride"
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War on Doctors/Pain crisis-Blog of the Pain Relief Network
Welcome to PRN. We are a network of pain patients, family members of people in pain, physicians, attorneys, and activists who are working toward a day when people in pain will be afforded the simple dignity and compassion due all ill Americans.
Bobby's wife Sharon had her long awaited posterior fossa decompression surgery June 12, 2006. The surgery has not yet had the desired effect of curing a 11 year long headache, a result of Chiari malformation and Ehlers Danlose syndrome.
Falling down is also a gift
Annika is the worlds bravest girl, Having survived a third liver transplant. Moreena, her mother writes this blog, and it is Bobby's favorite
Live Out Loud
My journey with the struggles of Chiari Malformation
DAANT
DAANT Miracle Aimee, a liver transplant survivor.
The real life
Nancy is an awesome liver transplant survivor.
Transplant Headquarters
Manu Varma
Had a kidney transplant in 2000, watched the field of transplantation swirl around me before and after, decided to start a blog about it.
HOW CAN I KEEP FROM SINGING?
Susan, a young mother writes about moving forward after a struggle with childhood illness, and ultimate loss and reminds us that this is just the middle of the night, not the end.
A MIDWIVE'S TALE
Live , Love, Laugh
Lace writes this blog about her brain tail, and is a Chiari survivor.
Chiari Malformation Blog
A brave fighter, Keesha illustrates her Journey through 14 surgeries. Ehlers-Danlos Syndrome, Tethered Cord Syndrome, Thoracic Outlet Syndrome have led her to become a patient advocacy specialist extraordinare.
Bobby's favorite nurseblogs
EMS blogs
Dr Au
Angel of death (c) 2004 Kristoffer Frisk is an artist who lives in a small town in northern Sweden called Harnosand. He is Bobby's favorite artist. This picture "the angel of death" is not a scary thing to Bobby, but rather a fact of life and reminder of one possible road, but not the current one. The current one is the road to a transplant, and an extension of his contract on earth.