Bonfire of the Goddesses
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Granny! I am toasting the marshmallows tonight in your honor!
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VR---------My blessings for all to go well. I wanted to say it now b/c I have a 5 minute memory. I'm guessing you are going to camp in his room . They likely will have him in ICU for the first few days. Were there ICU people at the meeting? Will they let you camp in ICU. Most won't , but this sounds like this should be an exception to the rule, as you are the most familar with any change. Check soon. If the answer is no, have your doc explain the rarity. If I were Dh's ICU nurse I would consider you an asset. You might even consider having your PCP make the request, if it hasn't already been discussed. But if the final answer is no, it's standard. When he gets too the floor, there should be no problem with you camping.Make sure they have him scheduled for a private room once discharged from ICU.This has all likely been considered b/c of the rarity of his disease but just in case it wasn't...................
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Sas... You are so sweet and thoughtful! He will be in a private CCI room. At the meeting we met the nurses that will be taking care of him and the two CCI doctors who will be on duty while he is there AND we met the chief of the CCI to! They have made arrangements for me to camp out too. My husband's metabolic doctor must have really enlightened all of them because they are pulling out all the stops... Or, he must have really scared them. Honestly, I really wonder how parents of critically ill children manage. I know it will be rough at first for the DH, but at least I know that when he comes around, he will be able to advocate for himself. I will tell you one more thing... What is really wild about some of the rare metabolic muscular dystrophies... When the people are feeling well, you would never know they have it. But when the disorder kicks in they can become catastrophically ill at the drop of a hat. So today, into the fire goes rare metabolic muscular dystrophies along with breast cancer! May all illnesses burn!
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VR--------I am in awe--------The preparation is so complete and organized. Please , a resident could get a paper out of this. Sounds like a dumb thing to think of, but b/c of all the intricate preplanning and the nature of you DH's illness it would get published. Residents are always looking for something. Ask your medical doc if anyone has already taken"debs" on the writing. awesome just awesome!!!!!!!!!!!!
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Throwing in my Insurance company...................just got the books on the 2012 cost for the premimum, and copays................................in these economic times they have a hell of a nerve............frigging thieves........................I am checking all the companies, and comparing prices..............plus they did not show Femara on their formulary..............I'll be damned if I'm gonna be a guinea pig for another AI...........this one is working so far, and damn if I will change.
Burn you friggin thieves......................who have no heart...............
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VR---Ive been AOL for a while and had no idea what exactly went on with DH but as im tryin to catch up I see the HELL the two of you are goin throu....Im sending you a big huggggggg for both you and DH along with the biggest match so you and I can burn all this crap away.I can do it alone but i would like your help.its sooo theraputic.You are in my heart and prayers....
Ducky----be careful with changing the insurance with all the crap goin on.....do your hoework real good....i wanted to change one dr.and the one i found did not even take medicaid.I wish you luck sista....
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VR did I offend and put my foot in my mouth? sas
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voracious...yes! My sandals are Thinks...LOVE them..now need to find boots or shoes that are the same brand as my feet do not hurt.
I am tossing in my boss who is an A**hole...legacy my a**....I just quit my job ....stillhave one sinc eit was only half of my job but the one I put sweat and tears into..it will be a stress relief .here's hoping
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Granny..............looking in to a few things, but not making any changes till I do all the homework.........
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Sandee...Ahhhh! Think! I just checked out 6pm shoes website and looked at their selection of Think! shoes, boots and sandals....you might be lucky to snag a pretty Think! sandal now for $50! But the boots and shoes...Oy! Why do the most comfortable shoes have to cost so much???!!!
Granny...Thanks for your kind words...AND match!
SAS...Nah! Actually, I've lost track of the number of journal articles that have been written about him. And I'm sure there will be another when this procedure is finished. Several years ago, they wrote up a journal article about a women who has my husband's disorder. She became pregnant and successfully delivered a healthy baby. We've come to expect journal articles written about rare disorders because it gives doctors a road map on how to treat these patients. I'm sure they will write up how they gave the DH general anesthesia and how he responded because for people with his disorder and the family of disorders which his is a part of, anesthesia can be tricky.
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VR-----good , I understand that you get it. Medical/ Nursing that recognize the importance of a happening or a change always flash to "this should be published". You have been involved enough with both to know our thoughts work differently than the standard human-----happy no offense was given------again blessings for all to be right.
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Okay sisters! Good news to report! DH procedure was a success! Doctors are collaborating on a paper already. Really. What did I tell ya?! So nothing today to make the fire burn. Amen!
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VR - Good news always trumps the crap for the fire.
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Voracious- EXcEllent news!!
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VR Wonderful!!!!!!!
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Vr ------------congratulations and big hugs. What a relief. Will he stay in CCI until discharge. If not then watch carefully if ya'll go to the floor b/c did they include the floor nurses???? If not you will have trouble there, hate to raise red flags , just want you to be prepared. But it sounds like your a Pro at this. I just worry. It is the protector in me. Three of us had polio as kids, and I took on the role of protector and it's stuck ever since. Regretfully, for everything in my life. Everything. On top of that I'm Catholic--------so with everything there is guilt. UGH
It will be a hoot to see who gets their name first in the listing on the paper. Smith ET ALL. The docs hate to be in the ET ALL position LOL. Publish or perish.
Yeah-------------for DH
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Is there a rule about burning the fire out of happiness, joyousness, thankfulness? If not let the fire burn bright for joyfulness this night for VR"S DH
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VR-so glad to hear hubby is done with surgery, speedy recovery.
Haven't been here in awhile, things have been going really well (excuse me while I shot myself in the foot). Have exchange surgery next Mon and am crawling out of my skin with anticipation. So very very tired of waiting so I came back to throw that into the bonfire along with the drains that will follow, getting a head start on that one.
Hang in there ladies, I'm sure I'll be back soon with something new to pitch in.
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Thanks sisters from the bottom of my heart.
SAS...Never mind calling yourself a "protector." In my book, it's an "advocate" and cheers to you too! I never make apologies for being an advocate. The only right way is my way when it comes to health issues!
Before I close this chapter, I just want to mention that it took 20 years before my husband was finally diagnosed with his rare metabolic genetic muscular dystrophy. Twenty, very long years!
Here's the story about him that appeared in The New York Times...if anyone is interested....
When Is a Heart Attack Not a Heart Attack?By LISA SANDERS, M.D. March 16, 2008
1. Symptoms
"I don't think he had a heart attack," the patient's wife declared emphatically. "I don't care what the doctor in the hospital said." The patient nodded his agreement. "But we need to be sure," she added in a distinctive Long Island accent. That's why they had gone to see Dr. Bruce Decter in New Hyde Park, N.Y., a cardiologist just out of training - to get a second opinion from someone a little closer to the books. The patient, a lanky 42-year-old man with a chiseled jaw, retreating hairline and skinny ponytail, seemed tired and anxious and grateful to have his childhood sweetheart do all the talking.
He had chest pain off and on for most of his adult life. His internist didn't think it was his heart, and a normal stress test done the previous year seemed to confirm that. Then the week before his visit to Decter, his chest began to hurt while making love. It spread to his left shoulder and arm. And it didn't go away. He hardly slept at all that night because of the pain and a gnawing anxiety that this time it really was a heart attack.
First thing the next morning he went to his internist. An EKG was normal, but the patient was so worried that his doctor arranged for him to see a cardiologist that afternoon. By then the patient was pale, sweaty and shaking. "I think you're having a heart attack," the cardiologist told the patient and then sent him straight to the E.R. The EKG done in the hospital was normal, but a series of blood tests indicated that he was having a heart attack, and a big one. He was rushed to the cardiac catheterization lab to see if the clogged vessel could be reopened. To the doctors' utter amazement, there was no blockage; his heart looked fine.
Still, the cardiologist was certain that the patient had some kind of heart problem. As he explained it, there was either a blockage that reopened on its own, or he had a spasm in one of the coronary arteries. In either case, the patient was lucky that his heart hadn't been permanently damaged. The cardiologist started the patient on a beta blocker - a medication that has been shown to protect the heart. But the chest pain kept coming.
2. Investigation
At his office, a week after the trip to the E.R., Decter examined the patient, a fit middle-aged man. His blood pressure was perfect. His heart rate was regular and slow. In fact, his entire exam was completely normal. He got another EKG. Also normal. The patient's blood tests from the E.R. seemed to indicate that he had had a heart attack, but none of the EKGs or the angiogram revealed any abnormality.
The problem for Decter was one that doctors face regularly: how to reconcile tests that contradict one another. Often patients, and even doctors, think that test results provide a definitive answer - like the solution in today's paper to yesterday's crossword. But every test carries a risk of being wrong, and all tests need to be interpreted. This is never clearer than when different tests seem to tell different stories. Could these apparently contradictory results be shaped into a single narrative that made sense?
The blood test in question measures an enzyme that is released when a muscle like the heart is injured. That enzyme, creatine phosphokinase, abbreviated as CPK, was normal when the patient first presented to the emergency room but rose to a level 20 times higher than normal over the next several hours. In a patient who has chest pain that comes on with exertion, an elevated CPK usually means that the patient is having a heart attack.
But damage to any muscle will cause CPK to increase, so there is an additional test that can determine whether the enzymes are leaked from a damaged heart or from damaged skeletal muscle. When Decter called the lab for results of this test, he found that the CPK hadn't come from the heart; it had come from the muscles of the arms and legs. "You're right," Decter told the anxious patient. "You didn't have a heart attack." But at this point, the young cardiologist acknowledged, he wasn't at all sure what the patient did have.
The patient considered himself pretty healthy, he told the doctor. He took no medicine, had never smoked and exercised daily. In fact, the only other time he'd ever been in the hospital was when he was 21 and had mononucleosis. His urine then was really dark - "the color of Coca-Cola" - and the doctors were worried.
When Decter heard that, something stirred in his memory. Cola-colored urine. Perhaps this was the key. Had he had this kind of dark urine since then? he asked. The patient told him that a couple of times a month his urine would turn brown and he'd feel achy all over. It happened whenever he was sick or tired or when he exercised too hard. He'd told lots of doctors about it, but none of them could figure out what was going on.
Decter knew he was on to something. Urine that dark is usually caused by muscle breakdown. When muscle cells are damaged, they leak CPK, but they also spill several other chemicals. One of them, the compound that gives skeletal muscle its distinctive deep red hue, can turn urine a dark brown. Were the brown urine and the elevated CPK caused by the same problem? Were they both signs of some longstanding disease process that was destroying this patient's muscle?
Decter sent his patient to Dr. Alfred E. Slonim, a pediatric endocrinologist by training who spent his career investigating diseases of the muscle. The patient called Decter after seeing the specialist, almost speechless with excitement. Slonim spent more than an hour with him and his wife, getting the history of his strange illness. "Tell him about what happens on Yom Kippur," his wife prompted near the end of the interview. Every year on the Jewish day of atonement, the patient would fast for a day, from sunset to sunset. And every year, he would spend the day after Yom Kippur in bed, crippled by an aching in his muscles and passing dark brown urine. Once he said that, Slonim had the diagnosis: the patient had a form of the genetic disease known as carnitine palmitoyltransferase deficiency or CPT.
3. Resolution
In this rare genetic disease, patients are missing the necessary biological equipment to burn fat for energy. Normally the body uses a type of sugar provided by the diet or stored in the liver to keep the body running. When that sugar is used up, the body switches to fat for fuel. Patients with CPT can't do that. Instead, when they run out of sugar, their bodies are forced to turn to the second backup form of energy: muscle. When this patient's body depleted the normal fuel - because of decreased intake (fasting or illness) or increased metabolic activity (exercise or fever) - it had to turn to the energy stored in muscle just to keep the biological motor running.
This diagnosis finally allowed the patient and Decter to make sense of the original story. The CPT gave the patient terrible, chronic heartburn; the delicate tissue of the esophagus, when injured, can cause a pain that feels to many patients very much like the classic presentation of a heart attack. Certainly this patient thought he was having one the night he had sex. He didn't sleep and didn't eat all the next day when he was in the E.R., and that is what triggered the attack on his muscles and elevated his CPK numbers. "It's incredible that it took a wrong diagnosis to get to the right one," the patient told me. There's no cure for this disease, but frequent meals can help ward off many attacks.
As for Decter, he says he doesn't believe that this disease is quite as rare as he was told in medical school. Over the past decade, he has seen four patients with unexplained elevations in their CPKs and no evidence of heart disease. Two have tested positive for CPT-like genetic disorders. He's still trying to figure out the other two.
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Survivor11...Glad you are doing well and wish you well next week!
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VR---thank you so much for sharing the full story. Totally fascinating. The fact that he made it to 42 before dx. is also fascinating. The fact that you happened to have Decter as your doctor what serendipity. He cared to find an answer. That's what I call a Sherlock Holmes doc. You can find that in nurses to ---I was one----But many docs are uncomfortable with it in a nurse. I had a patient in ICU as a float nurse who never had a diabetic hx or hx of hypoglycemia. She developed hypoclycemia on the previous shift(first evening of admission). Then I gave her her 2nd dose of Tequin--Brand new drug in the same family as levaquin). Checked blood sugars first and after then shortly and down her sugar was going. I turned off the Tequin. It was right when rounds were occuring. I reported everything. Head pharm doc threre. They decided to continue as proscribed. I then said something like----Can I tell you what I'm thinking? I said she never had a hx of hypoglycemia, it didn't start until after Tequin. They decided to stop tequin. I fought with her Blood sugar all day long. A lab is required with a certain low bs. I thought it curious that it was lower than what I had gotten on the icu hand held. Redid and it was dangerously low again--------another D50(concentrated dextrose). Two other regular ICU nurses were very complimentary that I had rechecked it when I did , they both said they wouldn't have checked for another four hours which was protocol. They then became my cohorts in monitoring her and giving me a much needed break. Several months later Tequin was taken off the market for causing Hypoglycemia. That was a Sherlock Holmes time. I was a float from the floor , but they had no idea of my nursing hx , I had vast experience---not to be boastful. But that's what I mean by Sherlock Holmes------a questioning mind that looks at what is,and compares it to what was not,and what should be. If I had not questioned what I had just described the drug mayhave been continued to be given until it killed her.I had a nursing friend , recently describe the demise of her mother and when she started to tell me about her uncontrolled bleeding even though she had been taken off coumadin , I asked if she were on flagyl. She said yes. Isaid it has a weird potentiation risk that can last days. Her Mom died. It was a Black box warning item in the PDR. I learned this from a previous experience caught early by a hematologist---------not the doc , not the pharmacist. Carried it through to another case and the head Pharm doc came as close to screaming at me as his reserved nature could do. Then called back an apologized and thanked me, it saved another patient. This may sound like it's all over the map. Bottom line is staying on top of everything that is going on is important. I'm so glad I'm not going back ----It's like Don Quixote in Man of La Mancha. tired of chasing windmills
VR again-so happy for you
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SAS-- Quite a story... My mother and sister are nurses. In fact, my mother was Director of Nursing at a city hospital for a number of years and I think the only reason why the hospital was standing was because of her! I guess that's why I'm not intimidated, not one bit, by the medical establishment.
We need more folks in the medical community like you. One of the problems with the FDA is the lack of communication with the medical establishment. When a patient has an adverse event from a suspected med, it SHOULD be reported to the FDA. Unfortunately, the medical establishment drags its feet more often than not when it comes time to report.
I guess you and I can go on and on about all the things that are done wrong, but sometimes, it's nice to chime in when something goes right!
Like Jo said, sometimes we have to celebrate the good stuff..so it trumps the crap in the fire!Lisa Sanders, MD wrote a book based on her New York Times Diagnosis column, Every Patient Tells a Story. I recommend reading it.
http://scma.org/magazine/articles/?articleid=445
A side note, the folks that produce the show HOUSE saw her Diagnosis column and asked her to come on board and help with the scripts! I keep in touch with her and have to say she is inspiring!!
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VR----wow....amazing story....brought tears to my eyes....im sooo happy for you that things turned out good.In Italian we say FINALMENTE translated to English it means finally.....I wish you and you DH all the best.hugggggggggs K0
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Thanks Granny! Yep. The chapter is FINALLY finished. I often think that dealing with the DH's rare disorder prepared me for my own journey....Time now to enjoy the toasted marshmallows!
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VR-sooo happy things turned out well for you and hubby.
Want to throw into the fire my ex-husband. He and I are still friends so he won't mind getting his butt scorched but dang he makes life hard sometimes. Always forgetting kids clothes, shoes, hoomework,, etc at home. Now I know the kids have to be responsible but he could help out the 5 year old remembering things. I have enough I'm trying to get together and remember for surgery on Mon and I've got terrible chemo brain still. Reminds me of why I divorced him to begin with.
Also want to throw in disability forms, Sooooooo tired of having to fill these suckers out every month. Hey I got an idea, if I haven't contacted you-I'M STILL SICK, stop having me fill out these damn forms everytime I turn around. I've paid for you all these years, now shut up and fulfill your end the deal.
Okay I feel better, until someone else pissed me off.
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VR ' It's nice to chime in when things go right"-------Well that just occured with DH b/c of the great intervention of your doc. Did it occur when I did my thing. It occurs anytime someone is willing to risk anothers displeasure. Docs have power, nurses don't. They have started this thing called MAGNET hospitals where nurse are empowered to do what I did. It's a load of cowpatties according to the nurses involved. It's great public relations. Does it exist? The Pharm doc in the situation re: Tequin, was put off, we never had the same relationship after that. I didn't have time to prewarn him of my thinking b/c rounds came to my door. I think he never forgave me for that, like I was trying to show him up or something. BUMMER, we had a great relationship before that. Knowing your MOM was a DON , she will tell you of similar stories. Like I said being DON Quixote is no longer in my life0
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My brother-in-law's wife is an RN. It was not too long after she finished her Masters degree that she stood up to a whole bunch of Drs---many of them ONCs. The hospital she was at had no pain clinic and she believed that most of her terminal patients were being under-medicated for pain. A group practice of the ONCs hired her to set up a pain clinic. It was so successful that for several years she worked as a consultant traveling all over the country doing the same thing at other hospitals.
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Chabba-------so great that they recognized her abilities. Very cool. I had that experience in the late 70's to middle 80's when I was educating Paramedics. What some of us did, changed the world of how EMS was done. My particular input was how assessment of a trauma victim should be done ---what a fight it was. The early days of EMS were amazing in that alot of it was empirical versus science. It was great to be there at the beginning and make a change. It started in the 60's , but the greatest change was made in my time that I was involved with some pretty amazing people. Cool. But no one remembers us , we are only noted in the first book. Such is life.
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Sas-have been an RN for 17 years and know what you mean about beating your head against the medical establishment but have seen great improvement over the last few years as more and more nurses are empowering themselves. I find that the nurses in specialty areas, ICU, OR, ER etc seem to have better luck with having their voices heard rather than floor nurses. I get very disappointed when I take patients to the floor and see and hear how they react to crisis, conflict-they seem very reluctant to buck the system. I think it's because the nurses in the specialty areas really do have to be strong personalities. You can not be afraid of a docter if you are going really going to be a patient advocate. Luckily I've always had a strong personality and have never had that problem, was standing up to docs on the floors years ago. I just worry that these days women go into nursing for the money and ease of finding a job. They don't seem to grasp that they are playing with peoples lives and they are often times the last line of defense for an otherwise defensless patient. My motto has always been, no matter what trouble you may cause or get into, do what's right for the patient. If you lose your job, or they make it hard on you, atleast you can look in the mirror at night and say, I did the right thing.
Into the fire goes any member of the medical community that doesn't realize or care what it's like to be the patient.
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"Into the fire goes any member of the medical community that doesn't realize or care what it's like to be the patient." AMEN.0
