CushieBlog » General Health

Have You Been Helped by Health IT?

MaryO — Thu, 02 Jun 2011 01:22:16 +0000

Do you have a story of how health IT, especially access to data, helped in a case? Improved an outcome, speeded a diagnosis, caught an error, anything?

The National eHealth Coalition is looking for real-world anecdotes, for use (anonymized or not) in their new “NeHC University”:

On June 20th we are hosting NHIN 304 – HIE Success Stories from the Patient Perspective. Our goal for that class is to get some stories from/focusing on patients whose health was improved or whose care was made more effective as a result of health information technology and exchange. …

We are not necessarily looking for patients to speak on the webinar (although that would be great), but we do want to share some patient-centric examples that will emphasize the value proposition of health information exchange from the patient/consumer perspective.

To contribute, write directly to NeHC’s Jenna Bramble at jbramble@nationalehealth.org

Helpful Hints for Dealing With Cushing’s

MaryO — Mon, 16 May 2011 23:51:22 +0000

Hint For…	What to do
Add Your Helpful Hints for Dealing with Cushing’s

Adrenal Crisis		On the Message Boards
Adrenal Crisis, getting medical attention	Before any crisis occures, contact the local ambulance service that would come to your home and/or work and find out if they have a protocol to treat you. My ambulance service could not give me the shot I needed even tho I not only had a medic alert bracelet, but a file of life on my refridgerator with physician instructions etc. After my advent, we had to bring it to the governing body’s attention for change, and now ambulance personel are approved to use information like the file of life or the Medic Alert bracelet to treat anyone with not only in Adrinal crisis but anyone with documented medical information. You could help a lot of other people besides yourself. You may need the help of your physican. Kim Pulsipher/Dr. Dan
Emergency Kit	Contact list: Primary and secondary. Charged cell phone, all the time. Directions for how to help. Print out info at http://www.cushings-help.com/911.htm Medic alert bracelet or pendant. See what others have on theirs here. Always carry a medical identification card that states the type of medication and the proper dose needed in case of an emergency. Never omit medication. If unable to retain medication due to vomiting, notify the health care provider. If there are places that you go often, be sure that those people know that you may have a problem. For a child, inform all of his/her teachers and other staff.

Body and Skin		On the Message Boards
Brown Spots	I have quite a few brown “age spots” on my face, I accidentally discovered a way to camouflage them when I got a sample of Vaseline Healthy Body Glow. It “tans” your skin. In my case it made the skin dark enough to match the brown spots so they don’t show up as much. I’ve noticed that there are now lots of similar products on the market and I’m sure that they will all work as well. ~ MaryO

Bones and Muscles		On the Message Boards
Arthritis	Water aerobics for people with arthritis is really helping. I do that twice a week. ~ MaryO
Arthritis	Since I can’t take my arthritis meds anymore, I’ve gone back on a combo pill of glucosamine/chondroitin. This only works for osteoarthritis, so if you have any rheumatoid, it won’t work at all. I was interested to see that The National Institutes of Health (NIH) is currently running a study of Glucosamine and Chondroitin Sulfate and Dr. Jason Theodosakis is heading this up. There’s more info on “Dr Theo” on Power Surge. Dr Theo outlined the complete plan in his Power Surge transcripts, saying that it wasn’t enough just to take the pills. His plan is: Have a thorough consultation with a physician. Take glucosamine and chondroitin sulfates to repair damaged joints. Improve your biomechanics to counteract stress to your joints. Exercise regularly. (But the right kinds!) Eat a healthful, joint-preserving diet Maintain your ideal body weight. Fight depression. Use traditional medicine as necessary. Maintain a positive attitude. ~ MaryO
Arthritis	Question: Will the glucosamine/chondroitin that supposedly helps arthritis help with the pain and stiffness of steroid withdrawal? Is there any harm in trying it? Answer: Glucosamine and chondroitin are chemical components of cartilage, tendons, ligaments, and other connective tissues that form the joints and muscle attachments. Some people with arthritic joint pain appear to benefit from taking these chemicals as dietary supplements (supplements because they are in a normal diet that contains meat). I am unaware of any report of their effect on the musculoskeletal symptoms of steroid withdrawal. However, I see no reason to anticipate any more risk for their use in this setting than in any other. ~ David Orth MD
Diet	Top 10 healthiest foods for spring Asparagus. Rich in vitamins A and C, calcium, iron and folate (the world’s most common vitamin deficiency), asparagus has been prized for its culinary and medicinal purposes since ancient times. Green beans. Harvested while still immature when the inner bean is just beginning to form, they are one of the few bean varieties that can be eaten fresh.. Spring Chinook salmon. The health benefits of eating fatty, cold-water fish are widely known, but salmon contains the highest volume of omega-3 fatty acids, essential for maintaining good heart health. Spinach. A Mediterranean favorite since the 16th century, spinach is a rich source of vitamin A (for cardiovascular health) and vitamin K (for bone health). Apricots. The true fruits of spring, apricots were first discovered in China and have been cultivated for more than 3,000 to 4,000 years. They are also rich with beta-carotene and lycopene, two carotenoids important in reducing the artery-clogging LDL cholesterol and maintain a healthy heart. Spring onions. Onions have been the subject of new research linking them to lower incidence of certain cancers. They also provide vitamins A and C, calcium and iron. Green peas. Green peas are a rich source of folate and a wide range of B vitamins, essential for the proper metabolism of fats, proteins and carbohydrates. Basil. A popular herb that can enhance the flavors of your favorite pasta sauce or spring salad, basil is a wonderful source of vitamin A. Avocados. Previously avoided by dieters due to their high fat content, avocados have made a comeback as a great source of heart-healthy monounsaturated fats to help lower cholesterol. By volume, avocados are also 50 percent higher in potassium than bananas. Spring greens. Choose from arugula, romaine, mesclun, bok choy and watercress to mustard, collard and dandelion greens. All are rich in lutein, beta-carotene, vitamin C, folate, minerals and fiber and excellent for digestion. ~ msn.com
Diet	Nutrition for Patients with Cushing Syndrome (National Institutes of Health, Clinical Center) – PDF File ~ NIH, National Institutes of Health, Clinical Center
Diet / Exercise	Question: While my cortisol levels are still high, is there anything I can do with my diet or exercise to keep my weight from increasing and loosing more strength? Is protein intake important? Answer: With excessive cortisol levels, diet and exercise are important to keep from gaining weight and losing more muscle strength. A nutritious diet with a multivitamin supplement is recommended, usually the diet should not exceed 1000 to 1200 calories per day. It is important that the balanced diet contain adequate protein, however excessive protein intake probably will not make much difference in muscle strength since excessive cortisol causes protein (muscle) breakdown. Since patients are usually treated soon after diagnosis, no studies have evaluated the effect of a high protein diet. Regarding exercise, the best type of exercise is that which is not stressful to the skeletal system. For example, swimming and bicycle riding are good exercises. Jogging and lifting weights are probably not a good idea since this does place stress on the skeleton (bones). Additionally, a calcium supplement is important. The recommended amount of approximately 1500 mg of elemental calcium per day can be achieved by taking 4 Tums Ultra or 3 tablets OsCal 500. ~ Mary Lee Vance MD
Headache	I choose to just eat salt like it’s a candy. I have a little container of plain sea salt (you don’t want the iodized stuff) and I lick my finger and just dip it! Gross I know… but it’s cured many a headache. My sodium remains low… but it never ceases to amaze me how salt will taste good, and then just stop tasting good. That’s how i know I’ve had enough. ~ ADDflower
Muscles	Question: My Cushing’s has been cured for about 3 years, but my muscle strength is still not like it used to be. I work out at a gym regularly, but is there anything else that I can do to try and recover my strength? Answer: Deterioration of muscle function is a common consequence of Cushing’s syndrome. The majority of patients recover full muscle strength and performance after cure of their Cushing’s syndrome. Physical therapy and a high protein diet have both been shown to improve muscle strength in patients with steroid-induced muscle damage. After cure, most patients recover normal muscle strength within 1-2 years. ~ James Findling MD
Muscle fatigue and weakness	From the message boards Question: A really big problem for me (and seems like a lot of people) is the muscle weakness and fatigue. Does anyone have any tricks that work for them? Answer: One thing that has helped me is eating more salt. Of course if your blood pressure is really high already, you shouldn’t do this. But mine runs pretty low and I have a hard time keeping my liquids….I am in the bathroom constantly. This is something Dr. F recommended after finding that I have low aldosterone and renin. Also, I am taking vitamins and iron. It seems to help sometimes and sometimes I am as fatigued as can be, but I figure it can’t hurt. Hope this helps! ~ Mertie Answer: If you are cyclical, it is SUPER important to chart. Part of the problem is that for some folks a Low symptom is another person’s High. After awhile you should be able to see a pattern showing itself. And yes, when I’m low like that, I did eat salt out of the shaker (I even have 5 different flavored salts, I know, i’m a whacko!) But when I’m in a Low, I haven’t found a way to pop out of it, or force a High. It’s something I’m working on though. ….If I eat lots of pasta or bread, I have lots of muscle aches and pains. A big bowl of mac’n'cheese will make me feel like I’m having a fibro flair most days ~ vinesqueen Answer: You’re right. I choose to just eat salt like it’s a candy. I have a little container of plain sea salt (you don’t want the iodized stuff) and I lick my finger and just dip it! Gross I know… but it’s cured many a headache. My sodium remains low… but it never ceases to amaze me how salt will taste good, and then just stop tasting good. That’s how i know I’ve had enough. ~ ADDflower Answer: One thing to try to find is Sea Salt to replace your normal salt with in the house. It is better for you than regular table salt. I crave salt and sugar. I can’t get enough of either one. I need to pick up some DHEA and try it out, it is a precursor hormone and I hear people say it help them feel better. I can’t seem to find any way to feel better lately, so I am working on a strategy also. I’m back to taking Flintstones vitamins with Iron and an extra Vitamin B6 also. ~ LisaMK Add your suggestion on the message boards
Osteoporosis	Question: I have osteoporosis due to Cushing’s. Will this improve over time? Answer: A recent study has shown substantial improvements in bone density within several years after the successful cure of patients with pituitary Cushing’s. Bones have the best possible chance for recovery when the replacement steroid dosage is as low as possible. If you are on replacement therapy following surgery, you should be working with your doctor to taper the steroid dose at a rapid , but tolerable rate. Bones can also benefit from a healthy diet and intake of at least 1 gram of calcium per day. Exercise has also been shown to be beneficial, but is best started under the supervision of a physician. Most patients with osteoporosis can undertake exercise such as walking or swimming without risk of injury. Exercise that is weight bearing, such as weight lifting, or exercise that involves a risk of falling, such as skiing, would not be advisable unless under the direction of a physician or physical therapist. ~ David Orth MD
Swelling	Question: Following surgery for Cushing’s, I have had a lot of swelling in my hands, feet and face. Is there anything that can be done to help this problem and is it anything to be concerned about? Answer: Swelling, or edema, may often accompany Cushing’s syndrome. Following surgical treatment of Cushing’s, some patients will continue to experience edema for some time following the surgery. This may be related to the frequent need for steroid therapy following curative surgery. This is really nothing serious, but can be uncomfortable. I usually treat patients with a water pill or decrease the dose of steroids. ~ James Findling MD

Eyes, Ears, Nose, Sinus, Throat		On the Message Boards


Hair		On the Message Boards


Heart and blood		On the Message Boards


Psychological		On the Message Boards


Sleep and Fatigue		On the Message Boards
	For insomnia try Bach Rescue Sleep. Two sprays on the tongue really seem to help. It is available in most health type stores and markets.

Miscellaneous		On the Message Boards
	ALWAYS TRUST YOUR INSTINCTS!! Read ~ Susan’s bio
	What pointed me in the cushing’s disease direction were the symptoms such as buffalo hump; hair growth on specific areas; weight gain around my neck, face, abdomen, chest and back; my pituitary adenoma and the last results from my test that showed high levels of cortisol. Read ~ Gina’s bio
	Get a copy of ALL your lab test results and copies of imaging reports and the actual images….on CD and films. Read ~ Gina’s bio
	It is absolutely critical for your physical and emotional health for you to have a doctor with expertise and experience with Cushing’s! Inexperienced doctors all too often misdiagnose, insult and frustrate, preventing prompt and proper diagnosis. Misdiagnosis can be lethal! Obviously, it is also crucial for you to have a surgeon with experience in order to minimize the likelihood of errors that can lead to complications or death. Wouldn’t you prefer someone who performs the surgery 5 days per week over someone who may have done it a total of 5 times in his or her career? On the other hand, doctors with experience are most likely to be more thorough and precise in recommending and offering the proper tests and treatments, and more aware of the subtle nuances and possible complications of the syndrome, learning from each Cushing’s patient s/he treats, to the benefit of others. Investigate your insurance, and if necessary (and possible), change your coverage in order to be able to afford to go to doctors who are Cushing’s experts. Because Cushing’s is often caused by a tumor, some insurance (including United Health Care) covers Cushing’s related medical expenses including travel to facilities they consider “cancer centers for excellence” if you need to travel over 100 miles to these experts. United Health Care covers medical expenses with no co-pay, including travel, lodging and meals for myself and a travel companion so that I am able to afford the best medical care possible from doctors who are experienced with Cushing’s. ~ Judi
	The most important advice I have to give is this: 1) GO TO A TEACHING/RESEARCH HOSPITAL!!! 2) If you have kids, think twice before eating disorder treatment. I went into the program with pain and a method of coping. I came out with an eating disorder psyche, bad experiences, and a truckload of pills that were making me crazy. 3) IF YOU THINK YOU HAVE FOOD DEPENDANT CUSHINGS, HERE IS HOW I COPE; • the cortisol goes up with too much of any protein, fat or carbs. I eat small turkey/cheese sandwiches at every meal (enough to be full, but well balanced). • I use stevia instead of sugar because its natural (health food aisle.) • alcohol really hurts now, so only a little wine occassionally. • lots of yogurts. • every couple days a mixture of senna laxative and stool softener (not too often) 4) Remember the squeekiest wheel gets the grease. ~ Magdalena’s bio

Men		On the Message Boards
Sex Drive	Question: Since having Cushing’s, my sex drive is next to nothing. Is this common, will this problem remain forever or get better? Is there anything that can help? Answer: A decrease in libido or sex drive is common in patients with Cushing’s. Several factors influence a person’s sex drive. In women, regular menstrual periods or adequate estrogen and progesterone replacement is important. In men, if the testosterone level is low, this indicates the need for testosterone replacement. In pituitary dependent Cushing’s, once the normal pituitary gland has recovered, the adrenal glands should be producing an adequate amount of both cortisol and male hormones (important in women for sex drive). If a woman has had 1 adrenal gland removed, the other adrenal should make an adequate amount of male hormones once the entire pituitary adrenal axis has recovered (this may take several months as well). In the situation of bilateral adrenalectomy, there is loss of adrenal male hormone production. If the ovaries are functioning normally, male hormones are also produced and this should provide an adequate amount for normal libido. If a woman does not have normal menstrual function and requires estrogen and progesterone replacement, sometimes a small dose of testosterone is added to improve libido. A common preparation is Estratest. ~ Mary Lee Vance MD

Women		On the Message Boards
Sex Drive	Question: Since having Cushing’s, my sex drive is next to nothing. Is this common, will this problem remain forever or get better? Is there anything that can help? Answer: A decrease in libido or sex drive is common in patients with Cushing’s. Several factors influence a person’s sex drive. In women, regular menstrual periods or adequate estrogen and progesterone replacement is important. In men, if the testosterone level is low, this indicates the need for testosterone replacement. In pituitary dependent Cushing’s, once the normal pituitary gland has recovered, the adrenal glands should be producing an adequate amount of both cortisol and male hormones (important in women for sex drive). If a woman has had 1 adrenal gland removed, the other adrenal should make an adequate amount of male hormones once the entire pituitary adrenal axis has recovered (this may take several months as well). In the situation of bilateral adrenalectomy, there is loss of adrenal male hormone production. If the ovaries are functioning normally, male hormones are also produced and this should provide an adequate amount for normal libido. If a woman does not have normal menstrual function and requires estrogen and progesterone replacement, sometimes a small dose of testosterone is added to improve libido. A common preparation is Estratest. ~ Mary Lee Vance MD

Children		On the Message Boards

Help Yourself

Medical Apps, Part 4: RXmindme

MaryO — Sun, 23 Jan 2011 07:52:04 +0000

I often forget to take my meds. And other days, I can’t remember if I took them or not.

So, here’s another great (FREE!) iPhone App: Rxmindme

From their features list at http://www.rxmind.me/Features.aspx

Making your life easy

RxmindMe includes:

Nine different types of reminders
A Passcode Lock screen for your privacy
Multiple types of alert sounds
Photos of your prescriptions
Email your prescription history
The FDA Drug Database for easy searching of medications
Historical records of all your reminders and prescriptions
Multitasking
Fast App Switching
iPhone 4 / iPod touch 4 – Retina Graphics
Snoozing Capabilities, 15 minutes, 30 minutes, 1 hour, or 2 hours
Ability to add multipule prescriptions / pills / vitamins / medications to a single reminder

RxmindMe has a growing feature set. We keep adding new things to help fellow pill takers monitor their medications, track what they take, and view their history of their medications.

We believe compliance is important for anyone taking medications, that is what RxmindMe aims to do, help you stay healthy and safe. No matter what you call your medications – pills, prescriptions, medications, or vitamins, we have the App to track them all.

RxmindMe allows you to use any application and receive reminders. We utilize iOS 4′s Local Notifications instead of the old Push Notifications. With Local Notifications, you need no network connection. Meaning you’ll receive your reminders anywhere at any time.

The home screen of RxmindMe gives you all your reminders for the day in once place. It allows you to easily identify which reminders you have missed, which reminders are coming up, and which reminders you have already taken.

From this home screen, you will have the option to create snoozes, add as needed reminders, and add prescriptions you take randomly throughout the day – like Asprin.

RxmindMe allows you to create nine different types of reminders

Daily reminders, ones that can occur on any day of the week
Weekly reminders, like daily reminders, but you can set weekly repeat intervals
Monthly reminders, monthly reminders that occur on a specific date during the month
Monthly reminders, monthly reminders that occur on a specific day of the week of a specific week of the month – for example, the last Friday of the month
Our new Every “X” Days reminder, repeats every few days
Hourly reminders for specific hourly intervals
As needed reminders which are taken infrequently
On specific dates, reminders that you want to occur on specific dates – for example the 28th of November

Now with the ability for devices with cameras to take photos of your prescriptions, you can see visually what you are supposed to take.

RxmindMe will keep and store your photos for your medicates, then it will display them along your reminders.RxmindMe now includes the up to date FDA database. You can search for prescriptions in RxmindMe, select the one you want, and it will auto populate the details for you. No more entering the units and name yourself!

No more forgotten meds for me!

Medical Apps, Part 3: Capzule PHR

MaryO — Sun, 23 Jan 2011 07:45:13 +0000

I just found a new iPhone app today which looks pretty good. You can add family members and send the info to another phone so everyone has the info they need. It’s only $.99 in the iTunes store:

It’s called Capzule PHR and the website is http://capzule.com/phr/ with help files at http://capzule.com/phr/phrhowto.html

There’s a free version to try called Capzule PHR Free

Features

* Push Notification to alert appointments
* Data Visualization via Interactive Timeline
* Edit records and upload files from Desktop/Laptop
* Record conditions and allergies
* Store doctor appointments
* Enter medications
* Email summary and graphs
* Print or download summary from Desktop/Laptop
* Maintain immunization records
* Enter vitals in Metric or Standard units
* Analyze line graphs of vitals and lab results
* Keep family, social, and medical history together
* Create custom health screening templates
* Enter notes, upload results and files
* Manage physician and insurance information
* Reset password when password is lost
* Categorize Notes and Attachments
* Email flowsheet data in CSV format along with graphs
* Email Summary with graphs embedded
* Backup and Restore from Desktop/Laptop
* Export CSV data from Desktop/Laptop
* Email documents
* Add files from other Apps (iOS 3.2+)
* Summary Reporting Filter

Medical Apps, Part 2: FindER

MaryO — Thu, 18 Nov 2010 16:09:44 +0000

smilez133 posted this on the message boards here

Massachusetts General Hospital Launches iPhone App to Locate Emergency Rooms

FindER Connects Users to the Most Complete Database of ERs in the U.S.

BOSTON—Researchers at Massachusetts General Hospital’s (MGH) Emergency Medicine Network (EMNet) announced today the launch of EMNet findER™, a free iPhone application designed to help users locate the closest emergency room to their current location, as well as provide directions and additional information with a touch of the screen. FindER uses the iPhone’s global positioning system to quickly direct patients to emergency rooms anywhere within the United States.

“FindER is designed to provide key information to people experiencing health emergencies,” says Carlos A. Camargo MD, of MGH’s Department of Emergency Medicine and EMNet director. “FindER uses information from EMNet’s own database of emergency departments, which is the most complete and accurate in the nation.”

Along with directions and general information, findER is designed for quick phone calls to both the care-center itself and in cases where necessary, 911 emergency services.

“EMNet researchers maintain a database of nearly 5,000 emergency rooms in the United States. Unlike a simple Google search where the results may include many emergency centers that have closed or moved, or even veterinary hospitals, findER’s results are based on an aggregation of emergency room listings from multiple sources that have been confirmed by researchers at EMNet,” says Camargo. “FindER is designed to help patients get to emergency rooms in the shortest amount of time.”

FindER is ideal for travelers, especially those suffering chronic medical conditions, or those traveling with friends or relatives with health problems. FindERis available now as a free download in the iTunes app store. Simply click this link or search “EMNet findER,” to download. For a short demonstration video, users can visit YouTube.

From http://www.massgeneral.org/about/pressrelease.aspx?id=1248

MaryONote: Just as info – the iTunes store said that there was nothing called FindER when I did a search. I found it only by typing EMNet findER. I have the app – looks great – and I hope I never need it again!

On Becoming Empowered

MaryO — Sun, 25 Jul 2010 15:35:27 +0000

Adapted from Participatory Medicine

This is kind of a “cheat” post since it’s a compilation of other posts, web pages, message board posts and some original thoughts. I’m writing it to submit to Robin’s Grand Rounds, being hosted next week on her blog.

For all of my early life, I was the good, compliant, patient. I took whatever pills the doctor prescribed, did whatever tests h/she (most always a he) wrote for. Believed that whatever he said was the absolute truth. He had been to med school. He knew what was wrong with me even though he didn’t live in my body 24/7 and experience what I did.

I know a lot of people are still like this. Their doctor is like a god to them. He can do no wrong – even if they don’t feel any better after treatment, even if they feel worse. “But the doctor said…”

Anyway, I digress.

All this changed for me in 1983.

At first I noticed I’d stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Lots of women lose their periods for a variety of reasons so no one thought that this was really significant.

Then I got really tired, overly tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time. I would lie down in the back of the van, set an alarm and sleep for the 30 minutes.

A whole raft of other symptoms started appearing – I grew a beard (Hirsuitism), gained weight even though I was on Weight Watchers and working out at the gym nearly every day, lost my period, everything hurt, got what is called a “moon face” and a “buffalo hump” on the back of my neck. I also got stretch marks. I was very depressed but it’s hard to say if that was because of the hormone imbalance or because I felt so bad and no one would listen to me.

I came across a little article in the Ladies Home Journal magazine which said “If you have these symptoms…ask your doctor about Cushing’s”. After that, I started reading everything I could on Cushing’s and asking my doctors. Due to all my reading at the library and medical books I bought, I was sure I had Cushing’s but no one would believe me. Doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

I asked doctors for three years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain. It’s too rare. You couldn’t have Cushing’s. I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes. I just knew that someone, somewhere would “discover” that I had Cushing’s.

My husband was on the doctors’ sides. He was sure it was all in my mind (as opposed to all in my head!) and he told me to just think “happy thoughts” and it would all go away.

A Neurologist gave me Xanax. Since he couldn’t see my tumor with his Magnetic Resonance Imaging (MRI) machine there was “no possibility” that it existed. Boy was he wrong!

Later in 1986 I started bruising incredibly easily. I could touch my skin and get a bruise. On New Year’s Day of 1987 I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker, like the rings of a tree. When I went to my Internist the next day he was shocked at the size. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.

Fortunately, the Hematologist/Oncologist ran a twenty-four hour urine test and really looked at me. Both he and his partner recognized that I had Cushing’s. Of course, he was sure that he did the diagnosis. No matter that I had been pursuing this with other doctors for 3 years.

It was not yet determined if it was Cushing’s Disease (Pituitary) or Syndrome (Adrenal). However, he couldn’t help me any further so the Hematologist referred me to an Endocrinologist.

The Endocrinologist, of course, didn’t trust the other tests I had had done so I was back to square one. He ran his own multitude of tests. He had to draw blood at certain times like 9 AM. and 5 PM. There was a dexamethasone suppression test where I took a pill at 10 p.m. and gave blood at 9 am the next day. I collected gallons of urine in BIG boxes (Fun in the fridge!). Those were from 6 a.m. to 6 a.m. to be delivered to his office by 9 a.m. same day. I was always worried that I’d be stopped in rush hour and the police would ask about what was in that big container. I think I did those for a week. He also did standard neurological tests and asked lots of questions.

When the endo confirmed that I had Cushing’s in 1987 he sent me to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing’s Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer ward.

When I left this hospital after a week, we didn’t know any more than we had before.

As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection. I chose NIH – closest and free. After I was interviewed by the Doctors there, I got a letter that I had been accepted into the clinical trial. The first time I was there was for 6 weeks as an inpatient. More of the same tests.

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

My story goes on and if you’re interested some is on this blog and some is here:

Because of this experience in getting a Cushing’s diagnosis – and later, a prescription for growth hormone – I was concerned that there were probably other people not being diagnosed with Cushing’s. When I searched online for Cushing’s, all the sites that came up were for dogs and horses with Cushing’s. Not what I was looking for!

In July of 2000, I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s. This thought percolated through my mind for a few hours and I realized that maybe this was my calling. Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves.

I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me. I didn’t want anyone else to suffer for years like I did. I wanted doctors to pay more attention to Cushing’s disease.

The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger. Today, in 2010, we have over 7 thousand members. Some “rare disease”!

The message boards are now very active and we have weekly online text chats, weekly live interviews, local meetings, conferences, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more. Because I wanted to spread the word to others not on “the boards” we have extended out to social networking sites – twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups, multiply.com, and much, much more.

People are becoming more empowered and participating in their own diagnoses, testing and treatment. This have changed a lot since 1983!

When I had my Cushing’s over 20 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.

Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting over a hundred other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!

I don’t know what pushed me in 1983, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years. I’m glad that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.

What do *YOU* think? How are you becoming empowered?

iPhone Medical Apps, part 2

MaryO — Fri, 22 Jan 2010 19:56:28 +0000

Part one was a blog post here. That page includes comments and suggestions from readers.

National Library of Medicine Launches Mobile MedlinePlus to Meet the Health Information Needs of an On-the-Go Public

Wondering what the side effects are for your new prescription? Go to Mobile MedlinePlus (http://m.medlineplus.gov) while you’re waiting for the pharmacist to fill your order!

Or, instantly look up the symptoms of H1N1 flu if you’re at the supermarket and your child’s school calls you to tell you he doesn’t feel well.

The National Library of Medicine’s Mobile Medline Plus builds on the NLM’s MedlinePlus Internet service, which provides authoritative consumer health information to over 10 million visitors per month. These visitors access MedlinePlus (http://medlineplus.gov) from throughout the United States as well many other countries, and use desktop computers, laptops and even mobile devices to get there.

The mobile Internet audience is large and growing fast, almost doubling from February 2007 to February 2009. Some experts predict that within the next five years, more people will connect to the Internet via mobile devices than via desktop or laptop computers. People use their mobile devices to accomplish a variety of tasks, including finding health information. With this in mind, NLM developed the mobile version of MedlinePlus to bring high-quality health information to users on the go.

“We know that a huge number of people are seeking good health information on the Web, noted NLM Director Dr. Donald A.B. Lindberg. What better way to reach out to them than by offering this new mobile service, which delivers trustworthy, consumer-friendly information instantly, anywhere?”

Mobile MedlinePlus is available in English and Spanish (http://m.medlineplus.gov/spanish) and includes a subset of content from the full Web site. It includes summaries for over 800 diseases, wellness topics, the latest health news, an illustrated medical encyclopedia, and information on prescription and over-the-counter medications.

For instance, you could visit the “Talking With Your Doctor” page on Mobile MedlinePlus to learn how to get the most out of your doctor’s visit.

Mobile MedlinePlus can also help you when you’re trying to choose an over-the-counter cold medicine at the drug store.

And if you’re traveling abroad, you can use Mobile MedlinePlus to learn about safe drinking water.

Mobile MedlinePlus puts reliable health information at your fingertips.

*High resolution screen shot of Mobile MedlinePlus available upon request.

The National Library of Medicine is part of the National Institutes of Health, an agency of the U.S. Department of Health and Human Services. It is the nation’s largest medical library.

The National Institutes of Health (NIH) — The Nation’s Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

From http://www.nih.gov/news/health/jan2010/nlm-22.htm?utm_source=twitterfeed&utm_medium=twitter

Participating in Life

MaryO — Fri, 08 Jan 2010 17:51:12 +0000

I think that this is so important, especially with our health. Had I not been an active participant and followed several doctors’ advice 25 years ago, I’d most likely not been here to write this.

I see this all the time, though. Whatever the doctor says is true. People will say that the doctor gave me this or that med but they don’t know what it is for.

I just don’t get how people can take meds and not have a clue what they are, how they work, how they might interact with other drugs they may be taking. But it happens because people blindly follow whatever a doctor may give them.

Participation is so important – you have to know how YOU’RE feeling, what YOUR symptom are. Do your own research. Your doctor doesn’t know what it feels like to live in your body no matter how much you try to tell him/her.

Ultimately, you are the one who cares most about yourself and the only one who can make a difference through your research, thoughts and actions.

Just because a doctor gives you something, you don’t have to take it. 24 years ago a locally well-known neurologist “gave me” Xanax. Since he couldn’t see my tumor with his Magnetic Resonance Imaging (MRI) machine there was “no possibility” that it existed. Had I followed his advice, taken the Xanax and stopped pursuing a Cushing’s diagnosis I would most have likely died by now.

The doctor was going by the odds. The odds were that I really didn’t have a pituitary tumor. But I’m not a statistic and neither are you. Follow your instincts and take care of YOU. This is the only life you’ll ever have.

The most healing thing we can do for ourselves is to participate in the process of our lives as fully as we can-even when the unexpected and the fearful happen.

~Today’s Page-a-Day calendar

What do YOU do to keep participating in your health care and daily life?

Helping others learn more about Cushing’s/Acromegaly

MaryO — Tue, 03 Nov 2009 13:58:26 +0000

I found this article especially interesting. This question was asked of a group of endos at an NIH conference a few years ago – if you saw someone on the street who looked like they had symptoms of fill-in-the disease, would you suggest that they see a doctor. The general answer was no. No surprise there.

Patients, if you see someone who looks like s/he has Cushing’s, give them a discrete card.

Spread The Word! Cushing’s Pocket Reference

Robin Writes:

This has been a concern of mine for some time. Your post spurred me on to do something I’ve been meaning to do. I’ve designed something you can print that will fit on the business cards you can buy just about anywhere (Wal-mart included). You can also print on stiff paper and cut with a paper cutter or scissors. I’ve done a front and a back.

Here are the links:

• Front: This card is being presented by a person who cares.
• Back (The same for everyone)

This Topic on the Message Boards

~~~~~~~~~~~~~~~~~~

And now, the article from http://www.guardian.co.uk/lifeandstyle/2009/nov/03/doctor-diagnosis-stranger:

Are doctors ever really off duty?

Which potentially serious symptoms would prompt them to stop and advise a stranger on a bus?

By Lucy Atkins

- Lucy Atkins
- The Guardian, Tuesday 3 November 2009
  Article history

Passengers on a London bus. Photograph: David Levene

A Spanish woman of 55, Montse Ventura, recently met the woman she refers to as her “guardian angel” on a bus in Barcelona. The stranger – an endocrinologist – urged Ventura to have tests for acromegaly, a rare disorder involving an excesss of growth hormone, caused by a pituitary gland tumour. How had the doctor made this unsolicited diagnosis on public transport? Apparently the unusual, spade-like shape of Ventura’s hands was a dead giveaway.

But how many off-duty doctors would feel compelled to alert strangers to symptoms they spot? “If I was sitting next to someone on a bus with a melanoma, I’d say something or I wouldn’t sleep at night,” says GP Mary McCullins. “We all have a different threshold for interfering and you don’t want to terrify people, but this is the one thing I’d urge a total stranger to see a doctor about.” So what other symptoms might prompt a doctor to approach someone on the street?

Moon face

Cushing’s syndrome is another rare hormone disorder which can be caused by a non-cancerous tumour in the pituitary gland. “A puffy, rounded ‘moon face’ is one of the classic signs of Cushing’s,” says Dr Steve Field, chair of the Royal College of GPs. “In a social situation, I wouldn’t just say, ‘You’re dangerously ill’ but I’d try to elicit information and encourage them to see a doctor.”

Different-sized pupils

When one pupil is smaller than the other, perhaps with a drooping eyelid, it could be Horner’s syndrome, a condition caused when a lung tumour begins eating into the nerves in the neck. This can be the first obvious sign of the cancer. “I’d encourage someone to get this checked out,” says Dr Simon Smith, consultant in emergency medicine at the Oxford Radcliffe Hospitals Trust. “People often have an inkling that something’s wrong, and you might spur them to get help sooner.”

Clubbing fingers

Some people are born with club-shaped fingers, but if, over time, they become “drumstick-like”, this could signify serious problems such as lung tumours, chronic lung infections or congenital heart disease. “Because it happens gradually, some people disregard clubbing,” says Smith. “But I’d say something because it can be an important symptom in many serious illnesses.”

Lumpy eyelids

Whitish yellowy lumps around the eyelids can be a sign of high cholesterol, a major factor in heart disease. Sometimes you also get a yellow circle around the iris. “I would suggest they got a cholesterol test with these symptoms,” says Smith. “They can do something about it that could save their life.”

Suntan in unlikely places

A person with Addison’s disease, a rare but chronic condition brought about by the failure of the adrenal glands, may develop what looks like a deep tan, even in non sun-exposed areas such as the palms. Other symptoms (tiredness, dizziness) can be non-specific so the condition is often advanced by the time it is diagnosed. Addison’s is treatable with lifelong steroid replacement therapy. “If someone was saying they hadn’t been in the sun but had developed a tan, alarm bells would ring and I’d probably ask how they were feeling,” says McCullins.

Trench mouth

Putrid smelling breath – even if the teeth look perfect – can be a sign of acute necrotising periodontitis. “I’d be able to tell when someone walks through the door,” says dentist Laurie Powell. “But people become accustomed to it and don’t notice.” Untreated, the condition damages the bones and connective tissue in the jaw. It can also be a sign of other diseases such as diabetes or Aids.

Thanking Medical Staff

MaryO — Thu, 29 Oct 2009 09:25:40 +0000

I was thinking about this over the last few days. My thoughts were sparked by a news item from England called “Patients say thanks to hospital stars“.

The Big C cancer centre and a nurse described as a “guardian angel” have been picked as the champions who go the extra mile from hundreds of staff put forward by patients.

Individuals and departments at the Norfolk and Norwich University Hospital were nominated for the hospital’s patient choice awards.

It’s so easy to complain about things when everything seems to go wrong, we don’t get the care we think we deserve, or the diagnosis we know we have.

Has your life been improved by someone who has done a bit more? How many of us take the time to thank people who have helped us? My husband is very good at this. Regrettably, I’m not but I’m going to try.