Pain and Other Things
Comments
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"Placebo effect: Also called the placebo response. A remarkable phenomenon in which a placebo -- a fake treatment, an inactive substance like sugar, distilled water, or saline solution -- can sometimes improve a patient's condition simply because the person has the expectation that it will be helpful."
The following article is a blog on Science Medicine.org. It's importance is that CAM(complimentary alternative medicine) has tried to use the placebo effect differently than it really is. The real thought about the placebo effect is, it's unknown how and why it happens. Almost every study addresses if a patient in the placebo group has had a response.
I have a personal belief something chemically happens. But that and ten cents won't get me a cup of coffee. It was an old saying in the family that what we were saying was opinion only. That being said, I have always (most always) used what Gorski would describe as "manipulations", with my patients to improve the chance of a drug working. Primarily, pain meds, but other drugs as well. I would teach about the drug. I would suggest ways to help the drug work better. An easy example is a sleep med. "To allow the drug work better, do relaxing things before bed(with more examples). Take the drug 1 1/12 hours before sleep. Then go to bed" Sounds good. But if the stage isn't set, the play is going to start. If someone takes a drug and does everything to interfere with it's work, it's not going to work well. The placebo effect is establishing 'something' that the mind is going to buy into and do 'something'. That part probably sounds a bit out in the twilight zone. I'll let this set here awhile and look back at it. May delete or alter.
Placebo effects are not the "power of positive thinking"
Posted by David Gorski on January 13, 2014 113 Commentshttps://www.sciencebasedmedicine.org/ted-kaptchuk-versus-placebo-effects-again/
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I was made aware of the MELT method by Mags who was told of it by Oncowarrior. I watched the neck youtube demonstration. Not sure how science/ medicine feel about it, BUT for the neck I did this from 1975 on. I slept in traction b/c of a repetitive stress problem. I have done this over time ever since. She does say she invented it, but many of her concepts have been around for decades. But she has put a program together with many youtube demonstrations. I will only link to the one below. The other videos will be listed next to the video.
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INFECTION. Old posts on evaluation for bacteria on hospital entry, post on culturing, dilute bleach baths. AS in all things consult your physician.
Dec 26, 2012 03:58AM - edited Dec 26, 2012 04:22AM by sas-schatzi
What we know: Mom has diaylisis 3x's per week, has a dialysis access some where, most likely an av shunt.
Surmizing on scenario: Known fact--Mom had a fall, fx'd hip, most likely transported to emergency by EMS, Eval'd by usual protocol in ER. Fairly universally, now in hospitals when a patient is eval'd and admission to the hospital is expected to happen for a surgical procedure, testing for MRSA is done at the "point of entry to the system". In Mom's case it is ER.
Reason: Medicare established criteria for hospital reimbursement, certain target problems were established as cause for NON-reimbursement(payment) by Medicare. MRSA is one. How do hospitals protect themselves from Non-reimbursement? The facility establishes at point of entry whether the patient has MRSA by nasal swab. If the patient is positive based on this swab, then all procedures are taken to prevent the transmission of MRSA from this patient too others i.e.isolation. The hospital can show that at point of entry the patient had MRSA. The MRSA was not AQUIRED IN THE HOSPITAL. Nosocomial is the fancy word for "hospital aquired infection". If a patient develops MRSA in the hospital, Medicare will not pay, b/c Medicare has drawn the line in the sand and said "We will no longer pay for your lack of due diligence in the prevention of infection". So, by proving that the patient has MRSA at point of entry, the hospital will get reimbursement for the hospital stay in it's entirety.
Private insurers and or secondary insurers follow medicare guidelines b/c they are so strict. If it has gone as I've described, Mom had MRSA as a colonized bacteria within her system. It's not new. Many people are colonized. MANY HOSPITAL STAFF ARE COLONIZED. Colonized means it is living in your body. In the case of "finding" it by swab without the patient being symptomatic, they are a carrier of the bacteria. Thyphoid Mary was a carrier of Thyphoid.
So, one day Mom's okay, then test, now everyone treats her like a leper. Sorry to say, but the hospital is just trying to make sure that they get reimbursed.
What will they do? They will put her on medication to eradicate the MRSA.
What does this mean?
1. It looks good for the treatment of the patient b/c a bacteria has been identified and treated. The risk is a negative reaction to the medication. Prolonged use or many times of use of antibiotics weakens the immune system.
2. Surgical patients that have MRSA in the body that have implanted hardware in the body can develop complications postop b/c the bacteria develops a slime attachment to the hardware which interferes and can causes a failure of the hardware to accomplish the purpose for which it was placed. For example, hips are repaired with many different devices. If I describe the devices , it will make you crazy. BUT an implanted device that gets a bacterial slime often ends up having to be removed.
3. A patient should be retested for MRSA at different points of admission and at discharge.
4. Family members and people that have close contact with the patient should be swabbed also to evaluate if they are carriers. This is rarely done.
Future admissions: They will always test her at point of admission i.e. Er or Direct to the floor(nursing unit) b/c of history of the positive swab. There will be a sign placed on the door that says " wound percautions". Makes me crazy b/c the staff isn't tested. There have been studies establishing staff as carriers.
Can't think of anything else right now.........
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Dec 28, 2012 11:10AM - edited Jan 24, 2013 03:32PM by sas-schatzi
So glad you broke the news about out of hospital MRSA--medical term "community aquired MRSA". Read the question late and decided, let's leave that alone for a bit.
This is another thing that makes me absolutely nuts. WHY IN THIS DAY OF RESISTANT BACTERIA, IS THE USE OF CULTURING NOT ROUTINE. LACK OF CULTURING GOT US HERE IN THE FIRST PLACE. Historically, cultures were routinely done up until the 70's. Then they were seen to be an added expense when such great broad spectrum antibiotics were available. So, someone was sick>>antibx>>didn't get better>>change to another broad spectrum>>finally, a culture woould be done when a person failed several antibx's.
Each use of an antibiotic incorrectly, do to lack of due dillengce by the prescriber, caused the bacteria to develop a resistance to the antibiotic.
Each time a person was prescribed an antibx that did work for them, but the person stopped the drug before taking all the doses, slowly allowed those bacteria's to gain resistance.
These two sentences summarize why we are in the mess we are today.
MRSA first showed up in the 70's. We now have other superbugs. MRSE-Methicillin Resistant Staphlococcus Epidermis, VRE-Vancomycin Resistent Enteroccoci. Other bugs are becoming more resistant all the time. Hospital aquired bacteria are becoming more prevalent. Biggest not stated above is Clostridium Difficile also known as C-diff, C-difficile.
Your nephews course of events could have been avoided with a simple CULTURE AND SENSITIVITY. Culture is read at 48 hrs, sensitivity(test against defined antibx's) is read at 72 hrs. It would have confirmed that the broad spectrum antibx, they put nephew on in ER was ok--meaning nonresistant. If the Er drug was resistant, they'd change the drug at that time. This does not mean the initial drug was prescribed wrong. It just means the bacteria your nephew had was resistant. Absolutely, a key difference.
To all:In the presence of a wound or infection in a mucus membrane(eye/nose/mouth/throat/urinary& or reproductive tract--vaginas/penises/urethras) that is serious enough to seek emergency care, request the following.
1st, tetanus consideration for wounds
2nd,culture for AEROBIC( lives in oxygen), and anaerobic(lives in the absence of oxgen) organisms--AND sensitivity.
3rd, ask for number to call for culture& sensitivity results(74-80hrs) and new medicine prescription should sensitivity show cultured bacteria is resistant. They will likely tell you that they will call you. Be bitchy. C&S's are read and reported to the doc's timely--day done. But if the doc's office is closed, you won't get a call for days, in the meantime time could be lost as it sits on the fax machine.
This answers your question re: cleaning of gym equipment. CAMRSA-Community aquired MRSA is a problem in gyms. Moist environments with lots of sweaty bodies, using the same equipment. But due diligence on cleaning, being aware when you have broken skin areas--see below. LOs Angeles Raiders (?, Calif. team)had an outbreak in their locker room several years back. They went public as a means to make other athletes, professional and amateur, aware. They brought in the CDC to make recommendations. Don't know if there was a follow up publication for the public re: recommendations. If there was, it would be a good list to follow. Google it.
The Community Aquired is worse than Hospital Aquired. Suggest googling it. Try the Mayo Clinic web site. They have VERY good teaching stuff.
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Dec 28, 2012 12:02PM - edited Dec 28, 2012 12:07PM by sas-schatzi
OMG---do not ask an obsessive compulsive(OCD) nurse how to prevent infections LOL. I posted this in Jan 2012 to someone else. It was in response to hospital acquired infections. Reposting here we need all the help we can get.
Jan 9, 2012 03:18 AM sas-schatzi wrote:A few seconds ago sas-schatzi wrote:
No one to my knowledge has tested charts yet. They are NEVER washed. They must be a hotbed of bacteria. Think of all the hands that touch them. I believe they need to go through a high temperature wash after each use. If a patient is there over so many days the chart should be changed and sent through a high temperature wash with chemicals etc.-------Periodically, you will see studies that show lots of other things that have been tested, even Doc's ties(awful), stethoscopes, handheld cells, phones, EKG leads, computer keyboards. Other nurses used to laugh at my OCD of cleaning at the start of each shift. I was not only trying to protect the patients, but US.
Started with noticing zits, in a certain pattern on my face. I went through puberty, basically, without zits. Then noticed a similar pattern on the other nurses. Cell phones in hospital were handed off to each other at shift change. My research showed a really good study out of Israel on the topic. The four studies from USA were all lazy studies. They all sited the Israel study versus doing any of their own microbial studies. Except one that sited a study of the Bacteria on EKG leads. Hand wiping EKG leads did little to remove bacteria. The study recommendation at the time was for disposable leads, but they weren't dependable enough at the time. Imagine my horror when waking up after my failed chemo that almost killed me, and they had put on telemetry leads across still healing Mastectomy wounds. Off they came--pronto. The nurse taking care of me reacted in disgust that I was so uncooperative with my CARE.
I felt like Felix Unger in the" Odd Couple". I'd have a talk with all newbies about cleaning the cells and beepers before handing them off. Even for break coverage, let alone at shift change. Cleaning their medication binders, the computer and Pixis keyboards.
Also. nix on fake nails-----horrible. First reports came in 1998. It took several years for it to become the rule. It only happened after Joint Commission on Hospital Accreditation made it a "recommendation" and that they would be looking for policies on it.
If a doc comes in with a dirty lab coat send him on his way, No hand washing by anyone---speak up. Hand washing should go up to at least 4-5 inches up the arm
Jewelry even wedding bands should be outlawed.
Watches should be done away with in hospitals. They have clocks in every room. They just need to have a sweep hand to do pulses.
All this stuff can be googled. I should think where else this can be posted. People can't protect themselves against that which they don't know about.
All IV poles and commodes should go through a big wash container. Suggested this for the new hospital for OR tables, they did it.
Anyone throwing dirty linen on the floor should be retrained. Each room should have it's own linen container ----not taken from room to room , or carried down the hall.
Each person should be given there own BP cuff------This is becoming more common.
Each person should be given a new phone----This is also becoming more common.
Shoe covers should be used by in hospital personnel, changed after leaving a room that has a known infection----now only done with serious infections that are in isolation status. Not even required by many hospitals for OR people.
As there are many more hospital acquired infections, a return to things that were done in a previous time are being looked at for control of the spread of hospital acquired infections.
Lastly, I believe that all immuno-comprimised patients should be in reverse isolation for our full hospital visit. That's all of us that are receiving chemo or recently received chemo, but are numbers are "UP". Our immune systems are not the same after all the chemicals dumped into us. We need greater protection from what we are exposed too. Numbers being "up" doesn't tell the whole story. This one I can't prove by studies. Wish I could. But been there did that , seen it to often that we are more prone to infections based on our life saving drugs like Tamox and AI's.
Well this chapter is at an end.
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Dec 28, 2012 12:02PM - edited Dec 28, 2012 12:07PM by sas-schatzi
OMG---do not ask an obsessive complusive(OCD) nurse how to prevent infections LOL. I posted this in Jan 2012 to someone else. It was in response to hospital aquired infections. Reposting here we need all the help we can get. Still looking for chevy's answer.
Jan 9, 2012 03:18 AM sas-schatzi wrote:A few seconds ago sas-schatzi wrote:
No one to my knowledge has tested charts yet. They are NEVER washed. They must be a hotbed of bacteria. Think of all the hands that touch them. I believe they need to go through a high temperature wash after each use. If a patient is there over so many days the chart should be changed and sent through a high temperature wash with chemicals etc.-------Periodically, you will see studies that show lots of other things that have been tested, even Doc's ties(awful), stethoscopes, handheld cells, phones, EKG leads, computer keyboards. Other nurses used to laugh at my OCD of cleaning at the start of each shift. I was not only trying to protect the patients, but US.
Started with noticing zits, in a certain pattern on my face. I went through puberty, basically, without zits. Then noticed a similar pattern on the other nurses. Cell phones in hospital were handed off to each other at shift change. My research showed a really good study out of Israel on the topic. The four studies from Usa were all lazy studies. They all sited the Israel study versus doing any of their own microbial studies. Except one that sited a study of the Bacteria on EKG leads. Hand wiping EKG leads did little to remove bacteria. The study recommendation at the time was for disposable leads, but they weren't dependable enough at the time. Imagine my horror when waking up after my failed chemo that almost killed me, and they had put on telemetry leads across still healing Mastectomy wounds. Off they came--pronto. The nurse taking care of me reacted in disgust that I was so uncooperative with my CARE.
I felt like Felix Unger in the" Odd Couple". I'd have a talk with all newbies about cleaning the cells and beepers before handing them off. Even for break coverage, let alone at shift change. Cleaning their medication binders, the computer and Pixis keyboards.
Also. nix on fake nails-----horrible. First reports came in 1998. It took several years for it to become the rule. It only happened after Joint Commission on Hospital Accreditation made it a "recommendation" and that they would be looking for policies on it.
If a doc comes in with a dirty lab coat send him on his way, No hand washing by anyone---speak up. Hand washing should go up to at least 4-5 inches up the arm
Jewelry even wedding bands should be outlawed.
Watches should be done away with in hospitals. They have clocks in every room. They just need to have a sweep hand to do pulses.
All this stuff can be googled. I should think where else this can be posted. People can't protect themselves against that which they don't know about.
All IV poles and commodes should go through a big wash container. Suggested this for the new hospital for OR tables, they did it.
Anyone throwing dirty linen on the floor should be retrained. Each room should have it's own linen container ----not taken from room to room , or carried down the hall.
Each person should be given there own BP cuff------This is becoming more common.
Each person should be given a new phone----This is also becoming more common.
Shoe covers should be used by in hospital personnel, changed after leaving a room that has a known infection----now only done with serious infections that are in isolation status. Not even required by many hospitals for OR people.
As there are many more hospital acquired infections, a return to things that were done in a previous time are being looked at for control of the spread of hospital acquired infections.
Lastly, I believe that all immuno-compromised patients should be in reverse isolation for our full hospital visit. That's all of us that are receiving chemo or recently received chemo, but are numbers are "UP". Our immune systems are not the same after all the chemicals dumped into us. We need greater protection from what we are exposed too. Numbers being "up" doesn't tell the whole story. This one I can't prove by studies. Wish I could. But been there did that , seen it to often that we are more prone to infections based on our life saving drugs like Tamox and AI's.
Well this chapter is at an end.
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Dec 28, 2012 01:02PM - edited Dec 28, 2012 02:55PM by sas-schatzi
Chevy this is a post to someonelse that has referrences to diluted bleach baths I found during my horror from hell infection. The bacteria I had made MRSA look tame. I was AGHAST! I'll post it and review again and check hyperlinks to see if they work. With your skin condition, do what I first recommended i.e back to the derm doc for a biopsy. They will either do scrappings or a "punch" biopsy. Either way the next test is a look under the microscope as well as doing a C&S. Don't consider the diluted bleach baths until this is done. Secondly, you MUST read the research PLEASE. This is serious business, you must determine if you meet the criteria as identified in the Pediatric Journal article.
Revised my recommendation. Do as above, take articles with you and get your doc's okay for bleach baths.
I'm done reviewing the reposted material and fixing the links. Some originally sited articles I couldn't locate. Whats happened is there has been an explosion of info on the subject. What in 2009 was considered quite controversial, has turned into standard practice. There are sooooo many articles now, you can pick and choose. Google Keywords:eczema, MRSA and bleach baths.
The links address Chevy's concern re treatment of her eczema and everyones concern re: CA-MRSA. Ta DA--two for one-- cool.
May 9, 2011 03:26 PM, edited Aug 19, 2012 03:26 PM by sas-schatzi
May9th 2011----------This post was written Feb 28, 2011 01:05 pm, edited 24 minutes ago by sas-schatzi sas-schatzi wrote:I have found the original article re Bleach baths.
pediatrics.aappublications.org...
depts.washington.edu/hmcderma/...
This is the original journal article. The original research was on community acquired staph with patients with chronic eczema. The importance of this article is it has generated and been sited as reference for dozens of other articles. Many peered reviewed articles. There are also references to this article by sources that have NO scientific background that do not understand science. Some of these non scientific article reviews are dangerous because they don't know what they are talking about. In some cases I question if they even read the original research or any peer reviewed articles.
I came across the original research when I contracted a very serious bacteria during a low immune state that was not controlled until I did the bleach baths. The bacteria I had was more serious than MRSA. After 5 weeks of standard treatment with no response, I did the bleach baths--cured in 24 hrs with another 24 hrs as a back up. Re-cultured and NED.
Everyone is aware that chemotherapy reduces immunity. What is less commonly known is that tamox and all of the Aromatase Inhibitors(Arimedex, Femara, Aromasin) reduce/lower immune status as does any of the steroids. Other drugs may do this also, but can't flip a name out right now.
What is , also, not commonly known is that sometimes we can be too aggressive in trying to "fix" a skin problem that we can make the situation worse. That is why the research is so important and seeking medical advice before trying to self treat. We can escalate a battle into a war with our good intentions.
12/28/12
http://applications.spectrum-health.org/Education/Home/Download?filename=x12074.pdf
http://www.mayoclinic.com/health/eczema-bleach-bath/AN02003
http://www.ncbi.nlm.nih.gov/pubmed/19403473
Instructions on dilute bleach bath
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Dec 29, 2012 09:14AM sas-schatzi wrote:
Might as well post alternative use of bleach bath, I used for my head. It was for enterococcus faecalis, generally takes months to heal, if it ever heals. Very often kills the person. Now you can understand why I was freaked when it was in my scalp.
Osha Occupational Safety and Health Administration requires that all restaurants and food service areas to wipe tables and seats with a 10% clorox solution. Workers are not required to wear gloves , even though they repeatedly enter this solution to obtain and clean the cloth. If it was safe enough for their skin , it would be safe enough for my skin.
I made a 10% solution--1part clorox to 9 parts water--poured it on the scalp. Avoid eyes and ears. First dosing, I let hair air dry( as they let equipment in restaurants). That was mon.am. 2nd dosing same on mon. night. Tues same except, I rinsed off and let hair air dry. Ditto wed am. Retested with C&S Wed afternoon. NED when report came back. Didn't bleach my grey hair.
Infection started after I had applied Minixodil hair grower---???????
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I have received permission from Bestbird to repost her posts here as I like. She's a wonderful writer with great knowledge. Again, I was looking for an old post and found this. I mentioned Palliative care earlier. Bestbird does a very nice presentation of this subspecialty. The reason it is important in the discussion of pain management is the focus of a trained Palliative Care specialist is the total management approach. Pain management docs may not look at all the diseases/conditions present. There is still confusion within cancer circles about this subspecialty b/c palliative care for ever so long was associated with Hospice. It is a separate subspecialty of the American Medical association. It is not Hospice.
Sep 22, 2015 12:00AM Bestbird wrote:
Thank you for reaching out on behalf of your sister-in-law. Palliative care as suggested above sounds like the best thing to do to keep her comfortable. My summary about it is provided below. I hope that she becomes considerably more comfortable.
With best wishes.
Palliative care is meant to help anyone with a serious illness. A patient can request it at any age and any stage of an illness (even upon diagnosis), and it can be used along with curative treatment.Palliative care is not dependent on prognosis.With palliative care, patients can expect to have more control over their care, along with a comfortable and supportive atmosphere that reduces anxiety and stress.The patient's care is reviewed regularly by their palliative care team and discussed with the patient to make sure that their needs and wishes are being met and that treatments are in line with the patient's goals.
Palliative care can reduce symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping.It addresses the whole person and helps them to carry on with daily life.It can improve one's ability to go through medical treatments and help the patient to better understand their condition and choices for medical care. In short, it enhances the patient's Quality Of Life (QOL).
Therefore, patients may wish to start palliative care early for best results, and they should request it from their doctor instead of waiting for their medical team to bring it up.
Most insurance plans, including Medicare and Medicaid, cover all or part of palliative care treatment.Palliative care is generally available in a number of places including hospitals, outpatient clinics, long-term-care facilities, hospices, or home.Usually a team of specialists, including palliative care doctors, nurses and social workers, provide this type of care in conjunction with the patient's doctor.Massage therapists, pharmacists, nutritionists and others might also be part of the team.To obtain palliative care in order to manage cancer or treatment side effects, the patient should speak with her or his doctor or nurse. Alternatively, patients can look up Palliative Care providers in their area at: http://getpalliativecare.org/providers/
From:http://getpalliativecare.org/whatis/faq/#what-is-t... and http://www.choosingwisely.org/wp-content/uploads/2014/09/Palliative-Care-Support-at-any-time-during-a-serious-illness.pdf
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This thread has a discussion of Fentanyl, antidepressants and other drugs Vitamin D, Proton Pump blockers -----a smattering of drug subjects
https://community.breastcancer.org/forum/102/topics/826526?page=1
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BLOOD PRESSURE------------revising
Jan 3, 2013 02:08PM - edited Jan 3, 2013 02:24PM by sas-schatzi
Taking a blood pressure, there are multiple approaches. The baseline BP is most often recommended to be done in the Am after waking and using the bathroom. Why bathroom? A full bladder can change BP in some when they need to go LOL. Also, take before meds. This will show what the BP control is at the lower blood level of the meds. The best drug agent is a drug that isn't highly sensitive to being taken at the same hour everyday. BP meds or any heart related med should be taken as close as possible at the same time daily.
You could take your BP before your 2nd dose of the day for say 2 weeks. Record. This would show you the trends. At that point you could discontinue the Bp check before 2nd dose. Also, you could take your bp during that time half way through the day from first to second dose. That would show the trend of midway. With some this may show that they actually get too low. This would allow a dose adjustment when used with the am, 1/2 way through day, and before last dose of day data.
The American Heart Association established target numbers for BP control with medicine several years ago. The target for the systolic(top) number was 110. (VEGGY your perfect). This number is nice , but with meds sometimes trying to get this number it ends up that the BP goes to low. Low is not always better. Many can be symptomatic with even 110. Certainly symptomatic the closer the number gets to 100 or below. Symptoms weakness, lightheadedness, fatigue, positional change--moving at normal speed from laying to standing, laying to sitting, sitting to standing. Positional change symptoms include lightheadedness to completely passing out.
So, monitoring BP and recording symptoms is real good for any new medicine or condition change until you see how your doing. Added weight for completeness. Good standard approach.
Chart weight BP, p, body position(laying,sitting,standing) symptoms
date/time________________________________________________________________________________-1/3/13-6a 120 120/80 80 sit none
1/4/316a 125 160/100 110 sit short of breath
in the example: it's obvious something is wrong, that's how recording helps. It's like Gibbs on NCIS slapping Dinozo on the back of the head.
Random thoughts on taking BP. 1. Activity-baseline taken at rest, may repeat after activity to evaluate exercise tolerance. 2.positioning of arm--have arm at side hanging down straight from shoulder. When arm is elevated above heart level you will get a lower reading. The example I always use is a garden hose --if you raise the hose end above the tap level, the water pressure at the end of the hose decreases. Same with BP. Signifcant change in some people to no change in others. In demonstrating this one time there was a difference of 65 points--that's significant. This is the MOST poorly understood and taught concept of BP checking. You see staff putting the arm on their hip, or up on the bedrail. Generally, I usually have seen an average of 30 points when teaching this. Still very significant, when info is used to determine treatment. 3.cuff positioning-use of forearm okay(research early 80's), key is to put device over the artery where arrow points. 4.legs uncrossed--this made it into the teaching and is almost universally followed, but it was based on bad research(Details left out).
Jan 3, 2013 02:08PM - edited Jan 3, 2013 02:24PM by sas-schatzi
Wren, there are multiple approaches. The baseline BP is most often recommended to be done in the Am after waking and using the bathroom. Why bathroom? Can change BP in some when they need to go LOL. Also, take before meds. This will show what the BP control is at the lower bloodlevel of the meds. Some BP meds are sensitive to timing. One in particular that comes to mind is Capoten. For a drug that is to sensitive to timing, if you have a written record, the doc can look at it, and may want to consider a different drug if trends show that. The ideal is that everything occurs at the same time everyday. The reality is that it doesn't. S0, the best agent is a drug that isn't highly sensitive to being taken at the same hour everyday. Bp meds or any heart related med should be taken as close as possible at the same time daily. As I write this, I just took my Am meds late. 1:30. UGH. eVEN WITH A MED PLANNER, we can forget. Had this happened with Capoten by now I would have had a rebound effect(BP shooting up). Capoten orally is not used much anymore b/c of this.
You could take your BP before your 2nd dose of the day for say 2 weeks. Record. This would show you the trends. At that point you could discontinue the Bp check before 2nd dose. Also, you could take your bp during that time half way through the day from first to second dose. That would show the trend of midway. With some this may show that they actually get too low. This would allow a dose adjustment when used with the am, 1/2 way through day, and before last dose of day data.
The American Heart Association established target numbers for BP control with medicine several years ago. The target for the systolic(top) number was 110. (VEGGY your perfect). This number is nice , but with meds sometimes trying to get this number it ends up that the BP goes to low. Low is not always better. Many can be symptomatic with even 110. Certainly symptomatic the closer the number gets to 100 or below. Symptoms weakness, lightheadedness, fatigue, positional change--moving at normal speed from laying to standing, laying to sitting, sitting to standing. Positional change symptoms include lightheadedness to completely passing out.
So, monitoring BP and recording symptoms is real good for any new medicine or condition change until you see how your doing. Added weight for completeness. Good standard approach.
Chart weight BP, p, body position(laying,sitting,standing) symptoms
date/time________________________________________________________________________________-1/3/13-6a 120 120/80 80 sit none
1/4/316a 125 160/100 110 sit short of breath
in the example: it's obvious something is wrong, that's how recording helps. It's like Gibbs on NCIS slapping Dinozo on the back of the head.
Random thoughts on taking BP. 1. Activity-baseline taken at rest, may repeat after activity to evaluate exercise tolerance. 2.positioning of arm--have arm at side hanging down straight from shoulder. When arm is elevated above heart level you will get a lower reading. The example I always use is a garden hose --if you raise the hose end above the tap level, the water pressure at the end of the hose decreases. Same with BP. Signifcant change in some people to no change in others. In demonstrating this one time there was a difference of 65 points--that's significant. This is the MOST poorly understood and taught concept of BP checking. You see staff putting the arm on their hip, or up on the bedrail. Generally, I usually have seen an average of 30 points when teaching this. Still very significant, when info is used to determine treatment. 3.cuff positioning-use of forearm okay(research early 80's), key is to put device over the artery where arrow points. 4.legs uncrossed--this made it into the teaching and is almost universally followed, but it was based on bad research(Details left out).
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Too true Mags. This sucks.
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An other thing
just received this from Dr. Retsky. Hope it doesn't create undo concern on anyone's part. But it's important. Dr Sukhatme does a beautiful presentation of the research done by Dr Forget.and Dr Retsky.
https://community.breastcancer.org/forum/73/topics/833612?page=19#post_4684309
my last post there today on the Toradol/Ketorolac thread is below
__________________________________________---
Hi, All, received this from Dr. Retsky
Look at this video from my coauthor Vikas Sukhatme. He is academic dean at Beth Israel Deaconess Medical Center at Harvard. A very smart guy. OK to circulate.
Michael
https://www.youtube.com/watch?v=H8zVrYEW8vE&feature=youtu.be
____________________________________________________
This is an amazing video presentation. The fella is brilliant and he makes the info so easy. What's sad is the story of Jennifer. Spoiler alert, Jennifer is his wife.
Every concern that we went through in the summer and into the fall for our small group, is addressed in this video.
What I think anyone trying to digest this info should request of their doc to review this video.
Folks with the knowledge that we gained last year, by talking it out, and flying by the seat of our pants came to the same conclusions that Dr. Retsky, Dr, Forget, and Dr. Sukhatme, we did good. Our research and conclusions were good. Yes, it needs to be confirmed by a prospective study. I hate the thought of a prospective study when the results mean that recurrence could be avoided by a simple < 10$ IV push pre-op.
Way back when I said that being on the right side of the change when change is occurring is the side we want to be on.
Dr. Forget has a study going in Belgium. Dr. Retsky is working on getting something approved in two other areas. India and Africa
As Dr. Retsky has said, feel free to share the link.
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An Other Thing; salt craving
Dehydration is a definite thought when it seems we crave salt, but othing that happens seems to happen for only one reason. I googled 'what does salt craving mean'. They're were a number of articles. Regrettfully, they all were trying to sell something. Even LIVESTRONG.com. I think googling the same thing and reading three or four will give you an overall look at the other things besides dehydration. The Gatorade is a good choice. This link had essentially the same info as the others, but was less blatant about selling something.
web definition: Craving for salt is also a common symptom of Addison's disease (decreased production of hormones by the adrenal glands), dehydration, and electrolyte imbalances. Depending on the cause, your salt craving may last only as long as it takes to rehydrate following mild dehydration from heavy sweating.Sep 20, 2013
This is from Healthgrades magazine. HEALTHGRADES develops sales tools for docs, hospital, and insurance companies to leave in waiting rooms or mail to their patients. They are done well. They keep it simple.
http://www.healthgrades.com/symptoms/salt-craving
What all the info does is place Addisons disease up front as a cause. This is misleading. It's very uncommon. Dehydration or electrolyte imbalance are the common origins
This time I asked google a different question. This is from a sports medicine doc.
http://triathlete-europe.competitor.com/2013/02/07/muscle-cramping-causes-treatment
That lead to this. which is an A-Z source. Very well written and not trying to sell anything
http://www.healthline.com/symptom/muscle-cramp
The muscle spasms I had were under the right rib cage, right lower abdomen, left pectoral, varying back muscles. lower legs and feet. Varying back muscles. Happened over a few weeks. When the incontinence occurred that got my attention and I went to the docs. I have had lower leg and feet spasms my whole life--Post Poilo. But this was at a new level. Then the torso stopped. Just stooped. In the reading today I saw where thyroid could be related. I'm still being adjusted on thyroid meds after removal. Last May the thyroid med was moved to a higher dose. Even on the lower dose I had some pretty strange other symptoms.
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An other thing: Being prepared
Bon has started a new thread. It's a compilation of a lot of info she has put together over the years. It is a wealth of info. It's all related to being prepared and knowing how to access things to get prepared for death. It's not morbid, just practical.
https://community.breastcancer.org/forum/8/topics/842551?page=1#idx_22
Edit. Regretfully Bon left BCO and asked that all her posts be deleted. This is a huge loss to the community. Huge. the info was so necessary
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AN Other Thing: Post Concussion Recovery. Hoping to get Blessings to write her story
Mar 25, 2016 09:58PM - edited Mar 25, 2016 10:02PM by sas-schatzi
Blessings been meaning to ask you about your head injury recovery. I've had so many if you remember, my right ankle is trying to kill me. But I remember so well after your head injury, how you had so much trouble processing. It was stark. You are now back to the Blessings we knew
I'm going to ask you to write a history of your occurrence. That's bold. But I have another thread " Pain and Other Things". I wanted to consolidate old posts and other things that may be helpful to others here on BCO. Your concussion story and your recovery are important. Particularly, coping mechanisms that you used. It could be done in several post i.e the occurrence and immediate aftermath, the midterm recovery, and then the long term recovery. Whatever you want to make it. If it's something you see as not wanting to put here, then if you would put it there. I'll bring back the link. If you could put at the header of the post something like "After a head injury, Post Concussion Recovery". You are great with words and a great teacher, so, I know whatever you come up with will be of value.Well too, another subject, you have b/c of DH's illness probably the greatest sense of creating the clean environment. Maybe not the best way to say it, but you have described the things you do b/c of his chronic reduced immune state. This is also important. I have had too many patients and heard stories here where folks don't have a clue or enough of a clue to keep themselves safe. When you've told the stories of what you do, it's impressive. I thought I had it down, I learned stuff from you for sure.
Okay have I missed anything? LOL.............. So glad you are back to or closer to your normal. Many hugs.
Mar 26, 2016 02:19AM Blessings2011 wrote:
Miss Sassypants -
Thank you for those sweet words. I thought BC would change my life, but the Traumatic Brain Injury was a total game changer. I think back to how bad off I was those first few months (wheelchair, then walker, then cane; unable to carry on a conversation; not recognizing everyday objects) and realize how blessed I really am. I'd be happy to help out however you need me to. I have some real processing deficits, but I seem to be adapting fairly well as long as I give myself permission to be different. Just don't talk too fast to me!
Also, the "Universal Precautions" are just a way of life for us. I guess you could also call us "Germaphobes".... but neither DH or I have gotten sick like we used to in the past. (Which is good; his immune cells won't be fully regenerated until August.)
Why don't you PM me and explain further?
xoxo
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Other thing: Earwax and Dizziness and unorthodox treatments.:
loved your story about the dizziness AND that she listened to you. Dizziness is one of the most difficult to pin down a diagnosis, that's why she said go to the ED the next time. Never ever heard that bear (autocorrect for ear)wax can put so much pressure on the eardrum that it sets off an imbalance.
I'm going to google it and see what it pulls.
Well, that was fun, I never studied ear wax. This doc did a nice little paper that is evidence based and he kept it simple. It's like he's sitting on Susie's comfy couch talking to us. It is truly worth a read.
http://www.dizziness-and-balance.com/disorders/hearing/wax2.html
However, it has set me off on a quest. He referred to a reference associating it with BC. Drops it in, but no other explanation. Not fair. Now I have to work.
I suggest an Ear/Nose, and Throat doc. Likely can be from a week till 1 1/2 months if you are a new patient. When I said it could be difficult, this link is to a differential for dizziness.
http://www.dizziness-and-balance.com/disorders/index.html
I suggest you take you BP in the morning after you pee. Then also, take it when dizziness occurs
Date/ time............BP............pulse...........Note...................................................................................................... Use lined paper.
Under note put either no symptoms, or describe symptoms, and if they're was any activity before the change. What you did, and how long before it resolved. By the time you get into a ENT doc, you will have some info for him already documented. This will save time as the very first rule out of dizziness is cardiovascular. He will think you clever.
The biggest number of falls related to dizziness occur with trying to get up to go pee. Fast movement is our nemesis. Figure out rules to not get up fast. Might even include an alarm to wake up if you don't wake in the middle of the night. That way your bladder won't be too full to allow you to go through your new ritual Which is when you awake, sit at side of bed for a few minutes. Then stand slowly. Stay in one spot till you are sure you aren't dizzy. If dizzy, falling back on the bed will get you down the fastest. But if you have ortho problems sit. The risk though is if you have a major bout of dizziness, taking time to sit may allow for a fall to the side or forward. The bed will catch you.
Many here have dizziness. I developed BPPV after a head knock in the middle of the night. Yes, you can laugh the docs did. 63 y/o ladies are thought not to do such things. Feels like a roller coaster ride. But it has majorly improved.
Blessings is very knowledgeable about dizziness. I suggest pm'ing her.
//////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////a few seconds ago by sas-schatzi
Now on to another observation in the video. Patrick Coombs has really big ears. Sounds strange to focus on that, but I studied it b/c I have hearing loss.
The external ear is named the 'Pinna". It influences hearing by funneling. While ears that project to far from the head are ridiculed, they work. Ears that are flat, may seem nice, but they loose the function of funneling sound.
I have three problems that lend to my hearing loss. The Pinna is flat to the head. The middle ear is subject to barometric changes, very different from almost everyone else. There is nerve conduction loss on both sides.
I have been recommended to get hearing aides for eons i.e. decades. I always said I would wait till advances were made. Since I had this weird middle ear thing about barometric pressure, I never had much hope.
Plus, the itchy ear thing. Got progressively worse these last few years. Tada, tried Vicks. It kinda worked, but didn't solve the problem.
Tried Bag Balm ----------it worked. Q-tip rolled in Bag Balm so the Q-tip is saturated, but not dragging lot's of extra balm. Repeated over time based on response. WOW.
This isn't a usual post for here. But when you got and itch that can't be scratched and then relief............nirvhana
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OTHER THING: Gene associated with type of ear wax and risk for BC
The story of BC link and a certain gene has had a bit of research. This abstract is from a study of over 3000 women. They're conclusion is they're is no relationship
http://www.ncbi.nlm.nih.gov/pubmed/21165769
But the research is continuing. The total story isn't done yet. The first link to Junie about earwax had a very good layperson's description of wet and dry earwax. Wet and dry is all based on genetics.
http://scholar.google.com/scholar?hl=en&as_sdt=0,10&as_vis=1&q=Breast+Cancer+and+ear+wax
24,000 google response of scholarly citations. The first link is nice, but it didn't convince the science community.
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OTHER THING: Blessings Post about dizziness,
Mar 11, 2016 07:32PM Blessings2011 wrote:
O.K. Sassy – since you mentioned my name…..

if I had to make a wild guess, it sounds like what you are experiencing is BPPV: Benign Paroxysmal Positional Vertigo. Basically, that means we have rocks in our heads.
Here is a good, but somewhat technical explanation: http://www.tchain.com/otoneurology/disorders/bppv/bppv.html
There are three parts to the ear –
1) the outer ear, where we use Q-Tips to clean the visible part, and goes all the way to the eardrum;
2) the middle ear, which is a chamber on the other side of the eardrum, and can be filled up with gunk, or swollen from allergies and colds; and
3) the inner ear, which controls the hearing signal getting to the brain, so you can perceive it as sound.
The inner ear is also a complex series of mechanics, and controls the vestibular, or balance system. You can't see it – it's located behind your eyeballs on each side of your head.
It is a system that is closed, filled with fluid, and little hair cells that move like tall grass growing on the bottom of the lake. A sound wave (energy) goes through your outer ear, into the middle ear, and hits the eardrum, much like striking a real drum.
Then a Rube-Goldberg set of bones are set in motion, which causes hair cells to wave in the water. Eventually this wave hits the part of your brain that turns it into recognizable sounds.
There is a snail-shaped structure in the inner ear called the cochlea. You may have heard of deaf people getting cochlear implants. These are devices that electronically send signals to the brain.
But I digress!
In all of this fluid, we can develop rock-hard crystals, which can get lodged - like a gallstone - in any of the openings to the semi-circular canals which are found pretty much at the end of all these mechanisms. Many times they can dislodge themselves on their own, or other times you will need some help.
There is a test called the Dix-Hallpike, where you are in the doctor's (Audiologist or ENT) office, sitting up on a table, and they lay you back quickly and turn your head to one side. They watch your eyes for something called nystagmus. That's the motion your eyes make when they're watching each car of a passing train go by.
You would then be instructed on how to do the Epley Maneuver at home, a series of positions you put your body in, designed to dislodge the crystals yourself.
A little explanation here: when you talk to your doc about "dizziness"… explain VERY carefully what you are experiencing.
Are you feeling lightheaded? Does the floor feel like it is tilting, or uneven? Do you feel like you are walking on a waterbed or sofa cushions? Those are all symptoms of dizziness.
Vertigo, however, is a definite sensation that the room is moving around you. It might feel like you are sitting in the middle of a skating rink, and a bunch of people are skating fast around and around you. It might feel like you are in a hamster wheel, and the room goes over and over your head, In any case, vertigo involves a spinning sensation.
I have always had vestibular issues, about five diagnoses. But the first time I experienced true vertigo was the time I had insomnia, tossed and turned, rolled over and slammed my head in anger down on my pillow. WHOA! Everything was spinning! I was able to clear the crystals myself by sitting up and not moving for hours. Had I gone to the doctor's, he would have been able to pinpoint exactly which ear in which the crystals were stuck.
These days, I never roll over in bed. I sit partially up, slowly shift over to my side, and lay my head down carefully. I never look quickly at the clock on my nightstand (up and backwards), as that brought on BPPV once. Again, I partially sit up – slowly – turn my whole body, and look at the clock that way.
At the dentist, I never let him flip the chair backwards quickly. I tell him to go ahead without me and I'll catch up, lowering my head slowly backwards as I lower my body. Same as at the salon when it's time to wash my hair.
Some people experience BPPV when looking for something on a high shelf. I just know I can't make any quick head movements.
When I get dizziness, disquilibrium, or vertigo, I do take 25 mg of Meclizine (OTC motion sickness drug, like Dramamine but non-drowsy. Brand name is Bonine. DO BE WARNED – DOES HAVE MANY SIDE EFFECTS AND PRECAUTIONS!)
It does not stop the dizzies, only keeps me from having nausea or vomiting.
Disclaimer: the BPPV is just ONE cause of dizziness. There are a GAZILLION reasons we get dizzy or have vertigo. Always, always, always check with your doc.
Sorry for the dissertation, but Miss Sassypants opened the door!!!
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OT: I have this strange thought, it's helped me cope forever. Not sure when it surfaced in this form. "All will be revealed at death". All the stuff of life that affects us. The stuff that makes a critical turn in our lives. All the painful stuff in particular. Physical, physchological, and emotional pain. It will be revealed in the moments after we die. AND in those moments all the pain that we went through will be healed. Hmm never wrote it that way before. Then into the nether, to be reborn again at a higher plain
...............Don't castigate me. It works for me. We all need something to make sense of the madness. -
Other Thing: Ropes on navigating services
On the insurance companies providing Nurse Case Manager and working through getting SW's and other stuff. The insurance companies learned over the years it saves money. In the early times the nurse just did a paper review(25-30years ago). They're was no direct patient contact.
Over time it was learned that allowing direct patient contact with these case managers improved care. Win win for everyone. After calling the insurance company when a definitive person gets back to you, ask for "assignment of a nurse case manager that will talk with you and that you have direct access to for the remainder of your coverage by that insurance". If they say they don't do that, consider a new insurance when the time is right. It's been the accepted "Best Practice" for around 15 years.
Can't tell you what it meant to me and DH. I knew the system was available and got it working for us. Our nurse was able to trouble shoot so much stuff. Basically, keeping the docs and insurance on the same wavelength without interruption. Saved money for us.
Now either the newly assigned case manager can work through the SW(socila worker) order by contacting your doc or you can call the doc's office direct. If you make the call ask that the a message be given to the doc requesting for a SW(social worker) to be ordered to come to the house for "Evaluation for resources and services". (this has nothing to do with Homehealth)
Tell doc at pre-op visit that you want homehealth after your discharged from the SNF. He may say that they will take care of that at the SNF. Not an unusual response. Then when you get admitted to the SNF--Tell them you want Homehealth to be set up for after discharge. Three days at least before discharge from SNF, ask if the the Homehealth has been set up. If it hasn't been done with all of these requests, It gives them 3 days to git'er done. Ask then each of the remaining days if it's set up.
One more thing may occur that may make you wonder how it happened. You may get a call from a person that says they have been requested to do a safety survey of the house b/c of the surgery scheduled. This has been usual for about 15 years. Who orders it is not consistent. Just ask for ordering person name. Check back with ordering person/company and get ID at entry.
The function of this safety review is to check for grab bars, floor covering problems, Shower safety. It's a cover every bodies ass review. Your mobility is going to be affected. If you are discharged home and are injured, Medicare/Insurance can deny coverage b/c the situation at home was not safe. You will never see this person again. It's their only function.
Now when you get home the first person in HAS to be a nurse if Medicare is involved. Not so with private insurance. PT(OT) can be the first in. Either does an assessment and writes the orders for the doc. THE one thing that Medicare and insurance has been trying to skimp on in the last decade or so is the nursing assistant. This has occurred b/c it was abused in the past. But safety showering and personal care are very important. If you feel that your safety in the shower is better served by having an aide. Don't accept a no.
Medicare will pay for 6 hours a week for personal care, bed change , and light meal prep. Private insurance may allow for grocery shopping. The key is that those hours are absolute for your care. Not traveling. A company may schedule it for 1 1/2 hours three x's a week or 5 day visits at 50 minutes. But that time is in your house working with you.
It's a game. Some may object that I say that. You are the GameKeeper. In order to make sure all that can be done, to make sure you are cared for, needs someone to watch it. If you as the patient are able, then it's good for you to do it. If not then a caretaker should step in.
Hope I did better this time.

Adding: I had a patient that had a sign in book for anyone coming in providing a service. I thought it odd until she explained that a particular company charged Medicare and services weren't rendered. She was billed when the service was denied. I thought it a good rule. It was date, signature, and reason for visit.
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Another Social Work Avenue. Services, resources and MONEY. I found this thread years ago http://www.needymeds.org/ It was started by a Social Worker out west and a doc in New England. They both wanted to help folks. It became a 501c3 charitable foundation. It's not an easy web site to use. I used to call folks and we would log in at the same time. We would click our way through the different pages to show them the ropes. I just did it with Phyliss last week. It's like an old farm house that rooms kept being added. I suggest that you attempt to wander through the pages over several settings. You have to be patient, patient. This search isn't going to be done in minutes.
Look at the tool bar in black. Hold cursor over "Patient Savings". A slew of categories will come up. It's a good place to start.
The key one you want to go through now is the "diagnosis specific">>>Diagnosis information. After studying that section Go to "diagnosis-based assistance.
Some of the info overlaps from page to page. Some doesn't. That's why it takes so long to work this web site. Just when you think you've been through every room of the old farmhouse. You find a new room with lot's of stuff in it.
When you click on breast cancer on the ' diagnosis- based assistance, it will bring up alphabetized organizations that help BC patients. The far right will tell you in which states the help is offered. The middle describes what type of help. Some offerings are with co-pay assistance, some with housecleaning like Shep suggested. Each organization is different, the help covers a wide range of things.
After you go through breast cancer. Back up to the "diagnosis -base assistance" page and click on cancer. After you are done with the national cancer page, back up and go to national bone cancer page, then the national MBC pages. If they're any more diseases that apply to you, go for it
.Under "Patient Savings"(black tool bar) there is another section re: perscription assistance. All pharmaceutical companies have Patient Assistance Programs(PAP). You click on the drug you are seeking assistance with. It will bring up the Pharmaceutical manufacture. You can read what their criteria for assistance is and apply. Go through all your drugs.
The beauty here is there is a link to a page that has the form for copay assistance. You fill it out once. You can use the same form for each drug company. You click on it and it's sent to the Pharm company. Easy peasy. If you don't like doing it on line here, then at least you have the phone number to call. But what will happen then is each PAP of the pharma manufacture will come in the mail or by email. Filling them out individually can be a pain if you are applying for assistance on multiple drugs.
Plan on a couple of settings or more to get through this web site. Have a pen and paper ready to write down what applies to you.
When I talked about the wealth of information that can be gathered from a Social Worker, this is the grandmother of social work lists.
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Another Social Work avenue. Services, resources and MONEY. Contact the Social Worker or finance person in your Cancer treatment center. Ask for review of your medications to see what you can get assistance with. It would seem that this is done automatically. We (DH & I ) didn't find out about this one till we got behind 2000$ on Neulasta. Chit a few questions later, and a bit of paper work and we had a grant covering all the Neulasta shots. PLUS, some retroactive coverage with reimbursement back to us.
Then I asked for all our drugs to be reviewed. Some were approved for grants that were already being covered by insurance. So, that grant money didn't get used. BUT say we lost our insurance, we knew there was an avenue for assistance on that drug.
I was a bit pissed. Why this wasn't done for each patient at admission to the cancer center for care, by automatically reviewing what insurance covered and then automatically looking for grant money for other drugs, no one could explain. It's not just in the patients best interest. It's in the cancer centers best interest b/c they know they are going to get paid.
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Another Social work avenue. Services, resources and MONEY. Each social worker provides a service in the setting they are in. Not all have the same information. I learned the best questions to ask were 1. May I speak to the social worker & finance person 2. To the SW, "can you identify any organization that can help with defraying cancer costs". "Can you identify anyone that can help with the other problems related to cancer i.e transportation, grocery, utilities, taxes, gas" 3. Who can work on the drug assistance coverage. 4. Ask for a Social Worker visit from your insurance company.
1. It would seem that this was self evident that all cancer patients have the similar money problems. 2. It would seem a reasonable thing that all SW's have the same lists--they don't. It all depends on what the SW's experience has been and what they added to their handout file. 3. You have to advocate for yourself.
After being involved from Jan 2009 for me(BC) and April 2009 for DH(Lymphoma, I asked my insurance company to send a SW to the house in Jan 2010. She came with a list. Circled some that may apply. The SW provides the list, it's up to the patient to make the calls. Neither DH or I were well enough to make calls. Anywhoos, I finally got around to contacting folks. Can you imagine learning he could be eligible for a grant up to 5000.00$ from the Leukemia & Lymphoma Society. Boy did I hustle getting the paper work together and submitted. DH did get the 5000.00$ grant. It could be used retroactively till their fiscal year beginning July 1st 2009. I did have presence of mind to prepare the next grant application to be submitted for the next fiscal year. What we missed out on was grant coverage for the first 6 months of 2009. Thinking about it now, that was several thousand out of pocket.
It was this same SW that identified a local fund that awarded grants to residents of two counties. It was a 501c3, but not listed in Charity Navigator. A well kept secret. We each received a 2000$ grant from this foundation. That was a total of 9000$. 5000$-LLS & 4000$ Local foundation. Every single penny was used.
The problem with this was, we went through hospital SW's with frequent admissions & Cancer center SW's for a year, and no one brought this up about assistance from the LLS, local foundation, or even the cancer centers finance/SW folks. It all had to be learned as time went on.
Locating needymeds.org didn't happen till long after our worst times, and I was trying to help someone else.
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Other thing: Vitamin D
Didn't want to risk this getting lost as the pages passed. I have suggested that Yogagirl start a thread similar too this as a storage place. She does very nice research.
Apr 29, 2016 11:59PM - edited Apr 30, 2016 12:30AM by yoga_girl
sas
As with any research, take away is of value to the person seeking knowledge; our DNA is unique to each of us and no two cancers are the same.
I will post what I can find that is published in the US; but as you may know many studies are performed outside the US with different results and interpretation. If reports are available, I will also post from other countries.
Please note my Vit D3 intake is monitored by two different doctors (allopath; naturopath) this is the only issue they both agree on. My levels are monitored every three months by blood tests. If I miss a dose or two a week, I don't sweat it. I do not spend time in the sun due to rads. I know my body and value blood tests for accuracy, I'm a numbers person, so this works for me. My dx, two different types of bc in the same tumor.
NOTE: take a 25-hydroxyvitamin D blood test to baseline and every 3 months thereafter to assess and adjust your dosage so your optimal blood levels will be where they should be year-round.
*****
Check back for updates on this post. . .
*****
http://www.ncbi.nlm.nih.gov/pubmed/27120467
See comment in PubMed Commons belowBreast Cancer Res Treat. 2016 Apr 27. [Epub ahead of print]
Vitamin D and androgen receptor-targeted therapy for triple-negative breast cancer.
Thakkar A1,2, Wang B1, Picon-Ruiz M1, Buchwald P3, Ince TA4,5.
Author information
- 1Sylvester Comprehensive Cancer Center, Department of Pathology, Braman Family Breast Cancer Institute and Interdisciplinary Stem Cell Institute, Miller School of Medicine, University of Miami, Miami, FL, USA.
- 2Sheila and David Fuente Graduate Program in Cancer Biology, University of Miami, Miami, FL, USA.
- 3Department of Molecular and Cellular Pharmacology, University of Miami, Miami, FL, USA.
- 4Sylvester Comprehensive Cancer Center, Department of Pathology, Braman Family Breast Cancer Institute and Interdisciplinary Stem Cell Institute, Miller School of Medicine, University of Miami, Miami, FL, USA. Tince@miami.edu.
- 5, Biomedical Research Building, Room 926, 1501 NW 10th Avenue, Miami, FL, 33136, USA. Tince@miami.edu.
Abstract
Anti-estrogen and anti-HER2 treatments have been among the first and most successful examples of targeted therapy for breast cancer (BC). However, the treatment of triple-negative BC (TNBC) that lack estrogen receptor expression or HER2 amplification remains a major challenge. We previously discovered that approximately two-thirds of TNBCs express vitamin D receptor (VDR) and/or androgen receptor (AR) and hypothesized that TNBCs co-expressing AR and VDR (HR2-av TNBC) could be treated by targeting both of these hormone receptors. To evaluate the feasibility of VDR/AR-targeted therapy in TNBC, we characterized 15 different BC lines and identified 2 HR2-av TNBC lines and examined the changes in their phenotype, viability, and proliferation after VDR and AR-targeted treatment. Treatment of BC cell lines with VDR or AR agonists inhibited cell viability in a receptor-dependent manner, and their combination appeared to inhibit cell viability additively. Moreover, cell viability was further decreased when AR/VDR agonist hormones were combined with chemotherapeutic drugs. The mechanisms of inhibition by AR/VDR agonist hormones included cell cycle arrest and apoptosis in TNBC cell lines. In addition, AR/VDR agonist hormones induced differentiation and inhibited cancer stem cells (CSCs) measured by reduction in tumorsphere formation efficiency, high aldehyde dehydrogenase activity, and CSC markers. Surprisingly, we found that AR antagonists inhibited proliferation of most BC cell lines in an AR-independent manner, raising questions regarding their mechanism of action. In summary, AR/VDR-targeted agonist hormone therapy can inhibit HR2-av TNBC through multiple mechanisms in a receptor-dependent manner and can be combined with chemotherapy.
*****http://www.ncbi.nlm.nih.gov/pubmed/24239860
Create FileSee comment in PubMed Commons belowJ Steroid Biochem Mol Biol. 2014 Oct;144 Pt A:65-73. doi: 10.1016/j.jsbmb.2013.10.022. Epub 2013 Nov 14.Modeling vitamin D actions in triple negative/basal-like breast cancer.
Author information
- 1Cancer Research Center, University at Albany, USA; Department of Biomedical Sciences, University at Albany, USA.
- 2Cancer Research Center, University at Albany, USA; Department of Environmental Health Sciences, University at Albany, USA. Electronic address: jwelsh@albany.edu.
Abstract
Breast cancer is a heterogeneous disease with six molecularly defined subtypes, the most aggressive of which are triple negative breast cancers that lack expression of estrogen receptor (ER) and progesterone receptor (PR) and do not exhibit amplification of the growth factor receptor HER2. Triple negative breast cancers often exhibit basal-like gene signatures and are enriched for CD44+ cancer stem cells. In this report we have characterized the molecular actions of the VDR in a model of triple negative breast cancer. Estrogen independent, invasive mammary tumor cell lines established from wild-type (WT) and VDR knockout (VDRKO) mice were used to demonstrate that VDR is necessary for 1,25-dihydroxyvitamin D3 (1,25D) mediated anti-cancer actions in vitro and to identify novel targets of this receptor. Western blotting confirmed differential VDR expression and demonstrated the lack of ER, PR and Her2 in these cell lines. Re-introduction of human VDR (hVDR) into VDRKO cells restored the anti-proliferative actions of 1,25D. Genomic profiling demonstrated that 1,25D failed to alter gene expression in KO240 cells whereas major changes were observed in WT145 cells and in KO clones stably expressing hVDR (KO(hVDR) cells). With a 2-fold cutoff, 117 transcripts in WT145 cells and 197 transcripts in the KO(hVDR) clones were significantly altered by 1,25D. Thirty-five genes were found to be commonly regulated by 1,25D in all VDR-positive cell lines. Of these, we identified a cohort of four genes (Plau, Hbegf, Postn, Has2) that are known to drive breast cancer invasion and metastasis whose expression was markedly down regulated by 1,25D. These data support a model whereby 1,25D coordinately suppresses multiple proteins that are required for survival of triple-negative/basal-like breast cancer cells. Since studies have demonstrated a high prevalence of vitamin D deficiency in women with basal-like breast cancer, correction of vitamin D deficiency in these women represents a reasonable, but as yet untested, strategy to delay recurrence and extend survival. This article is part of a Special Issue entitled '16th Vitamin D Workshop'.
KEYWORDS:
Breast cancer; Invasion; Microarrays; Vitamin D
*****
From NIH site
Vitamin D
Cancer
Laboratory and animal evidence as well as epidemiologic data suggest that vitamin D status could affect cancer risk. Strong biological and mechanistic bases indicate that vitamin D plays a role in the prevention of colon, prostate, and breast cancers. Read more from link below.https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/
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Other Thing: IV site and catheter problem----------allergic to polyurethane
I have developed a sensitivity to acetate in the reading glasses. Finally, one day I put it together. I got a different plastic. It presented with simply feeling my nose skin on the left itchy then right, not much, then hurtful to the point I was "aware". Nose was saying pay attention. First I thought I need to make a dermatologist visit. But then I got the connection with the glasses. I went to the Optician and asked what the glasses were made of, he thought acetate. He really didn't know. I think I have polycarbonate now. I'm thinking about getting an eye shield thing like docs, miniaturists, any magnifying need----- head thing. I read about 4-10 hours a day. I'm addicted. I would adjust if I couldn't read, but it is my life. BUT the story is bigger than that.
I developed a sensitivity to polyurethane. This story will be complete which means overlong. I was getting yet another cat scan. I said to the nurse that the last 4:5 IV sites didn't heal right.
1. The bad healing sites--4----hadn't been in more than 2 hours. All started by different technicians. Their technique was perfect.
2. Those sites looked like a site looks like after three days. The bore look. Scabbed for 5-6 weeks. No redness, swelling , or drainage. Remember nurses I said that they were in not longer than 2 hours. Not good.
3. Those sites took weeks to heal(5-6). I was thinking Hmm....... worry....pre-diabetic?
4.They're was 1 of 5 IV sites in that time that healed and was invisible in less that 24 hours.
I went to a friend in my old unit which was Specials and OR/recovery. She immediately, identified that the hospital went to polyurethane catheters. in that time, but the Specials/OR/Recovery had switched back to Teflon catheters b/c they had problems. My trip to the unit was in the time period that Teflon caths were used. That was the site that healed in hours. Highly suspicious. I did research. Nothing identified a problem with polyurethane caths. Since I was coming up on a Thyroidectomy, I had to convince folks to make a polyurethane free equipment box for me. Meaning nothing used on me, in me, left in me could contain polyurethane.
Since this was not a recognized thing, I knew I would get resistance. I saw a Immunologist. (allergy doc) Got an official script that said I was allergic. Called the Risk Manager. Made him in charge. Plus, asked him to make a report to the FDA. My request was that all items used on me, in me(endotracheal tube, bladder cath, IV cath), left in me did not have polyurethane. Biggest fear was an eroding trachea. Not a nice thing. The key to cooperation was the Allergists script. I knew how to work the system.
Can't tell you what it did. People calling suppliers, suppliers calling companies. Everyone documenting. Actually, retrospectively, I didn't get it in writing just his word. Won't make that mistake again. Anyways handled well in surgery, no problems. That was April 2014. Haven't had another IV since. Amazing. Till last week.
Colonoscopy. Different hospital. Went through the drill of telling everyone days ahead to determine what type of IV caths they had. Day of procedure no one had transmitted the info. I assumed it wouldn't be from the beginning, too unusual.. After the office visit, I went directly to the pre-admission area and had a note added.. Then the day before, the quickie call with questions, it was not on the chart, I had it added. And as I already said it was not on the chart the day of the procedure. Too unusual---they didn't realize the risk. Chit. Took them time to work it out. The cath was Vylon(sic). Which already makes it in the Teflon/nylon family --"on". versus the "thane" family. But I let them sweat. b/c they didn't pay attention.. LOL, I just realized none of them must have payed attention in chemistry. I'll cut them slack they all were concerned and worked it out.
IV site was invisible by the next day.
I'm a Sherlock Holmes type. The bothersome thing here is this could have been chased and misdiagnosed for ever. The message of this story. If something isn't right...............be Sherlock
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A newbie asked our group how we got through BC, this is my summary of 7 years.
How do you get through this stuff.........put your head down, shoulder forward, and pussssssh
And Pray......................................
Pray not to survive, pray to be.......... day to day, that you deal with today, with hope that tomorrow is good to excellent. We change our old ideas about days. We change our ideas about minutes when the need is there. At first, numb. Then a fog. Then a flurry of activity. Then a slow down of activity. There's more, but I'll leave that out for now. Feel the wind, feel the warmth, and breathe........................
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Other thing: Proton pump Inhibitors, aka proton pump blockers---PPB/PPI's Old post of an old post
Mar 1, 2016 03:13PM - edited Mar 1, 2016 03:16PM by sas-schatzi
Goats I'm not a fan of PPI's/PPB's. They are trouble drugs. Nasty long term consequences. Worst is osteoporosis. I had to work on my brother for a couple of years. I wrote him an email when he was getting worked up for heart sx.. I'll bring it here. It's very formal. He's a big brother. Had to make it sound official. He's off them now.
Apr 13, 2015 11:06AM sas-schatzi wrote:
Hi all, I'm reposting this email I sent to my brother. It's in regard to Proton Pump Inhibitors PPI's. Also, known as Proton Pump blockers. This class of drugs is way overused incorrectly. DB is going to have open heart sx in the near future. We have been in a "discussion" re: the misuse of this drug for some time.PPI's can contribute either directly or indirectly to Osteoporosis, Acute interstitial nephritis, hypomagnesia,, Thrombocytopenia, Pre disposition to Clostridium Difficle (C-diff).
"In preparation for your upcoming surgery, a relook at your medications is an important step to take now. This link is to Medscape. All articles on Medscape are Evidence Based. The article is mostly layperson readable if you consciously ignore the statistics. Trying to absorb the message of the article can be lost when the numbers get in the way.
With the major surgery that you will be having, consideration of the PPI as a potential contributor to surgical complications is a concern. This article nicely addresses the major problems associated with PPI's. There is much in the literature addressing the same problems identified in this one article. These problems are also identified in the drugs monograph.
If you decide to pursue a change in Prevacid use after studying, discontinuation of a PPI should be done by weaning over 3 weeks. PPI's were never meant for long term use. Consideration of switching to an H2 blocker in the near future is important. This would allow for the bodies adjustment without undue direct and indirect side effects. If this were attempted during the surgical phase it will just be a problem as the gastric cells are regenerating and the gastric environment is coming back into equilibrium.
I will review Medscape for a similar study on H2 blockers and hopefully identify the least problematic drug of the class. At this time Pepcid is in the forefront, but I will be looking at the class with particular interest related to your scenario.
Use of a PPI or H2 blocker in the operative period and postop has been the standard of care since the 80's. This occurred because of the recognition of the Surgical Stress Response. This response involves many body systems. Without getting into a dissertation, gastric ulcers are a problem during this time. Hence, the use of PPI's and H2 blockers. My goal is that you become knowledgeable enough to say to your docs that you want an H2 blocker because of the reduced risk of complications over a PPI.
I will forward information on H2 blockers when I find them.
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Other thing: Sore throat
This was my grandmother's recipe or so we all thought. I found it about 20 years ago in a folk medicine book. The recipe was dated around 1800-1830. If it was written down then, I figure it was in use a few hundred years before that. Vinegar has been documented as an antiseptic back thousands of years, as the other components have there own centuries of use too.
It's a gargle. It tastes AWFUL, but it works. Best used at the first sign of a sore throat. Gargle and spit, gargle each 1/2 hour for the first few hours. IMPORTANT to rinse the fore mouth after each gargle as it's tough on the teeth and tastes awful. It will feel like it's burning the throat. But the burning feeling is where you are feeling the "bugs" trying to take hold. If a sore throat is advanced this won't work well.1.Find a glass bottle that you can store in the frig. Best with a cork b/c the vinegar can corrode a metal cap. I use a 10 oz. bottle
2.Fill bottle to the brim with cider vinegar and pour into a small sauce pan.(some of the vinegar will evaporate with boiling)
3.cover bottom of sauce pan with a layer of salt
4.cover bottom of sauce pan with a layer of red pepper seeds
5. boil for a few minutes (5 or so), and let cool completely
6.strain into bottle, cork it, and store in frig. -
OTHER THING Producing endorphins------------The key here is to focus on the description of Pain control. The post was written on the constipation thread re: travelers constipation.
Judy,43 pages on pooping and this has never been brought up, but I know we have all been through it. I tried to access Oz's video it didn't work. There are many articles. I chose this article from Readers Digest b/c it incorporated Oz, WebMD, and others
Readers Digest to you youngers may seem so old fashioned. But amazingly it broke many stories to the public that were kept hidden. That other publications wouldn't touch. RD did and changed history in so many subjects. I've not followed it for a number of years, probably 10 or so. You know I study allot. From the 60's RD was a consumer advocate and got things going on so many subjects. One of the classics was endorphins in 1975.
I remember it oh so well b/c I was in neck traction every night. But I learned how to think "It will be numb, It will be numb" The area of pain got as numb as if it got shot up with lidocaine. The side effect was I got quite high. It was a blessed relief from the pain, but as a nurse I had to go to work. I used it only in the worst pain scenario. I thought the weird highness. Weird. But the pain relief was so nice. No doc could explain what was happening. THEN I was reading my RD and they had the reports about Endorphins and Endorkins. It explained it. So much for journals and docs. Also, what was weird was if I had any pain altering substance on board the self thought didn't work. Anywhooses, of course now one paid any attention. I was so delighted when the RD article came out.
Historically, there is much more. Like the absence of women in clinical trials that article change history by causing all trials to include women. Another story about a female obg/gyn doc identified that her health conscious patients that ate lots of fish lead to discovery that eating too much of the predator fishes had high levels of mercury which was causing birth defects.
But these types of stories didn't get wide press. But RD was read widely. Women demanded answers. I have regretted over the years that RD declined. It once was a great force for the advancement of us as women.
So, back to the subject regarding travelers constipation, this is the synopsis by RD
http://www.rd.com/health/wellness/natural-constipation-relief-travel/
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Other thought; Pain imaging control
When I did it in 1975, it was out of extreme desperation. Nothing controlled the pain. No clue why I thought of it, but just thought repeatedly "it will be numb". It worked, but it took time to work up to complete numbness. I didn't think pain relief. I thought "Numb". No idea why I chose that thought. When it started to work. It was such a total blessing b/c the pain was so high. When it worked the pain was gone, but also touching the area it was literally numb.
I have used it sparingly over the years, not sure why.
Once I explained it to a co- worker when I was in intense pain. He said just do it. He could see how much pain I was in. I did it. Great pain relief, but he also saw the side effect of me getting high. He drove me home.
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The next three posts were written on the Beta Blocker(BB) thread, but have application here too. So they are being reposted here, but abridged.
There are oodles of new BB on the market since I retired in 2009. For me that's huge b/c when new drugs came to market I studied and studied them. Any new drug not only meets the characteristics of the classification it's in, but usually has one or two unique qualities that causes it to be different than the other drugs in the class. It's those unique characteristics that should cause a newly prescribed drug to be chosen. But..but regretfully some docs are drawn to the drug du jour. That can be trouble. 1.usage 2.cost.
Usage b/c after market(approved for use by FDA and sold on the open market) side effects may show up in the wider population that didn't show up in trials. For example, the aromatase inhibitor Arimidex was the first drug in the class. The musculoskeletal complaints and damage didn't show to be a serious problem during trials. Took a few years before the docs accepted the complaints as being related. I remember hearing a speech by one of the lead researchers saying "We were surprised by these complaints, we will have to take another look and study this more". My thought was no shit Sherlock.
In choosing a drug with your doc ask that strong consideration be given to a drug that has been in the market for an arbitrary 5-10 years. That generally allows for any aftermarket problems to be identified and/or the drug pulled from the market or use narrowed to amore specific group. Generally, you'll see maybe 3-4 years for a marginal problem drug. 1-2 years for a bad drug. I'm sure someone has a stat someplace, but that's ballpark.
Cost, pretty obvious. One time a doc ordered an antibiotic. Script was just under a 100$. I had the pharmacist call and request a cheaper drug in the same class that was considered to be still widely effective. That change cost me only 16$.
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Blood pressure machines. All are not equal. Consumer Reports has done a comparison of machines for at least 15 years. Omron has been the leader in the field for a couple of decades at least and was rated best. BUT Walmart bought the rights to use the Omron technology. The Walmart brand Reli-On is half the price of the Omron brand with the same internal technology.
No matter the quality of the machine you must learn how to properly take a manual pulse. Rather than write the full description here have a nurse teach you how to do a radial pulse. In your scenario I suggest a 30 second or one minute pulse. Pulse check is NOT just checking rate. Assessing quality is very important. Is it weak, bounding, regular? The newer Omron technology has been designed for years to check for regularity, but the technology isn't perfect. Plus the subtleties can't be noted. Once well established on a cardiac regimen taking a bp a few times or once a week is adequate. Of course, if you notice a symptom change take it.
Take AM BP after you pee. A full am bladder can alter results. All textbooks will say take the am bp before arising. Decades of practice have taught me about the full bladder scenario. You won't find the connection on google b/c it hasn't been studied. If Bladder isn't full take before arising. When adjusting to any new cardiac drug check bp minimum one more time in the day i.e in a relaxed state before preparing dinner. Key is relaxed state in the evening.
Position of cuff on arm and position of the arm. The cuff can be placed on the wrist. Research was done in the 80's that showed that it was just as accurate as the upper arm. Relaxed on your lap or arm chair. Cuff on the upper arm, the arm should be positioned at the side against the side chest. Key is the arm should NOT be raised above heart level. The analogy I use is a garden hose. If you raise the garden hose above the tap/bib level you will see that the end flow decreases i.e pressure decreases. if the arm is above heart level you will see a decrease in particularly the systolic level. In teaching this for decades, I have seen a range change from 0- 65 points, where I did a proper check, then a repeat check in a few minutes with the arm elevated on the bed rail or my hip. This will make you a bit crazy now b/c you will notice how frequently improper bp's are taken. This is critical, truly, if treatment decisions are being made based on the BP. Most/ many cardiologists take there own BP's for this reason.
Cardiac diary. Ideal is to start minimum one week before starting on antihypertensives or diuretics.. Ideal, am and pm measurement. This gives you a great understanding of what your normal is. You mentioned White Coat Syndrome(WCS). I'll add it's description here for others following.
It was studied and published around 1998, but had been known about for many many decades. WCS is an elevated bp when seeing a doc proverbially in the white coat. But it's larger than that, any anxiety producing situation can elevate the bp. This can be a false indicator to the doc and NOT allow for proper evaluation of your true normal BP. THAT's where the importance of the cardiac diary comes in, take the cardiac diary with you to all cardiologist visits. The doc can then evaluate your routine picture and how you present during the visit. Big safety plan

How to do a cardiac diary: lined paper and make vertical columns. I didn't put in activity. If BP is taken after exercise just note that when documenting position. You can't believe how long it took to do those next two lines to do to get them to line up. LOL.
date/time. Cuff wrist or arm, .bp......pulse..position(laying(L) , sitting(S), standing(ST).... syptoms
8/4 ............ wrist ............... 120/80 .. 80 regular, ................... s....................................... none
8/5 ............. wrist................100/60 ....50 irreg...........................s.....................................faint
If you look at the two examples, you can see something changed. By keeping a cardiac diary you know what the problem is versus saying cheez I feel strange. Enough of an explanation?
Lastly I think. Wallycats post about metoporol and other drugs leading to diabetes is a great point, but believe it or not not all docs are aware of other conditions that a drug may cause. Talk with your Pharmacist about drugs in any class before you buy the prescription. Hydrochlorothiazide HCTZ is one of the most prescribed diuretics in the world. It was the first line drug in BP management for years. When it was prescribed for my DH in early 2000 and I did my serious in depth research on it. It showed that it could lead to diabetes type 2. I was pissed. It had been used for decades and that was not well known. He was already diabetic.
The key is one drug for one purpose may lead to a long term consequence to another body system.
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To All, I'm spending all this time on the basics b/c if you are going to take a vasoactive drug, these particulars are necessary to know.
Now to the guts of the discussion with the doc about which drug to use.
1. In discussion with your doc ask for an older well established drug that has a long standing safety record, that won't lead to another disease condition. Plus that is cheap.
2.. Start at the lowest dose . Solfeo start at the pediatric dose. Anyone having a known sensitivity to many drugs start at the pediatric dose or 1/4 to 1/2 the usual starting dose.
3. Ideal is to start cardiac diary for minimum one week before. Take am & pm Bp's for minimum two weeks after starting drug. Then daily for a while untill well established. Once well established you can change to a few times a week or once a week, or whatever you and your doc agree upon.
4. If you have a change of symptoms try and take BP while symptoms are occurring.
5. Study your drug well to know all the expected side effects.
6. Ask Pharmacist to always run a drug checker for interactions if any new drug is added to your regimen
7. Take cardiac diary with you to doc visits
8. If you every feel weak or faint (this works for anytime weak or faint)---GET FLAT. If the symptoms are related to the vascular system it will allow the system to equalize. Once symptoms pass, rise to a sitting position slowly. Symptoms return get flat again and raise legs to a 45-60 degrees. Then repeat getting up slowly. Getting flat not only allows the body to equalize, but if your Bp or heart rate have become so changed that staying upright would cause a faint, you have avoided the injuries related to the fall from fainting. Google Orthostatic Hypotension for more info.
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