Re: How to Make Yourself Heard in the Hospital

[Guest guest]

Interesting and timely article. I was hospitalized one day last week

after going to the ER with an intestinal bleed at 10 PM. I was

finally admitted to the hospital at 6 AM. They estimated that I had

lost about two pints of blood and units were ordered for a

transfusion. When I finally stopped bleeding around 6 PM they

decided that I was regenerating blood fast enough to avoid the

transfusion, but they scheduled a colonoscopy and upper GI endoscopy

for the next morning to find out what was causing the bleeding.

After those two procedures, the GI doc told me nothing but dropped a

stack of literature on diverticulosis on my chest and disappeared. I

had no other communication from anyone until 27 hours later when they

said I was being discharged. I howled that no one had spoken to me

about my condition or the result of the procedures. So the attending

Dr finally came by and told me that I had diverticula up and down my

colon and that they were the likely cause of my bleeding. She said

that she was prescribing Prilosec for me. When I asked her what it

was, she explained that it was to counter acid in the stomach. I

told her that I had no experience of acid in the stomach and that she

had just told me that it was a problem in my colon and so why the

Prilosec. Her answer was, " Well if you don't want to take it you

don't have to. "

Well, I was furious. If there was a reason to take it I wanted to

know what that reason was, not be told that it was up to me whether

to take it or not. I wanted her to explain the rationale for taking

the medication, but she just seemed offended that I asked, and gave

her response as if I was impudent for questioning her. The truth is,

I don't think there was a good rationale. It is something you

prescribe when there has been a stomach bleed and there really isn't

anything you can do about bleeding diverticula in the colon except

wait for the bleeding to stop. I am not taking it, especially since

I have researched it and there is a danger associated with taking

Prilosec if you have high BP, which I do.

Well, I have been wanting to vent about that ever since it happened

and this article just prompted me to do it now. Sorry to bore you

all with my personal experience.

One other thing though. My hospital experience made me realize that

there would be a great benefit to having internet access in every

room of a hospital. I don't know if they can do wifi in the

hospital, but there should be some way for patients to get on the web

and research their condition and medications, not to mention allowing

them access to email. The patient is their own best advocate and if

they can do their own research, they have the best chance of getting

better sooner. Of course then they are likely to ask impudent

questions of their doctors, so it probably won't happen.

>

> How to Make Yourself Heard in the Hospital

> Tuesday, December 12, 2006; Page HE04

> The Joint Commission on Accreditation of Healthcare Organizations, a

> nonprofit organization that evaluates hospital care, recognizes the

> dangers of miscommunication in hospitals. " Sometimes caregivers

don't

> realize that how they deliver a message can shape a patient's

> perception of the care they receive, " says JCAHO media relations

> manager Charlene Hill.

>

> Here are some steps JCAHO recommends for a patient who feels he or

she

> is not being treated properly by a hospital staff member.

>

> 1. Address the staffer directly, explaining the problem. The staffer

> may be unaware of it.

>

> 2. Relay your complaint to the nursing supervisor.

>

> 3. Ask your primary care doctor to intercede for you in dealing

with a

> brusque hospital caregiver or clarifying insufficient information

from

> a specialist.

>

> 4. Enlist the help of a healthy friend or relative who can speak up

> and seek an explanation for a staffer's words or behavior.

>

> 5. Enlist the help of a supportive staffer.

>

> 6. Make your complaint known to the hospital's ombudsman. Most

> hospitals have one on staff.

>

> 7. If all else fails, register your complaint by contacting JCAHO at

> http://www.jcaho.org.

> http://www.washingtonpost.com/wp-

dyn/content/article/2006/12/08/AR2006120801705.html

>

> Teaching Hospitals How to Listen

> One Woman Struggled to Convince Administrators That Staff

> Responsiveness -- or Lack of It -- Affects Patient Outcome

> By Okie, Special to The Washington Post

> Tuesday, December 12, 2006; Page HE01

> My friend Sylvia Stultz, who died of cancer in June, was a clinical

> psychologist whose passion was teaching social skills to autistic

> children. Until she became sick with a rare sarcoma, about two years

> ago, Sylvia ran therapeutic groups for such kids, helping them learn

> how to make friends, notice interpersonal cues and carry on ordinary

> conversations.

>

> Sylvia had enviable social skills: Although she lived alone, she

> maintained close connections with a large network of friends and

> relatives who supported her throughout her illness. Her directness

and

> sense of humor endeared her to her doctors, nurses and other

> caregivers, calling forth their best efforts on her behalf.

>

> However, as a cancer patient undergoing treatment at several

respected

> institutions in Washington and Boston, Sylvia noticed intriguing

> parallels between her experiences in certain clinical settings and

her

> work with autistic children. She encountered striking differences in

> the cultures of the places where she received her care: While some

> hospitals and clinics seemed to encourage responsiveness and empathy

> among their staff members, others appeared to foster an atmosphere

in

> which patients often felt ignored and employees often seemed

reluctant

> even to make eye contact. Since Sylvia felt powerless to affect the

> course of her own illness, she focused her energies, for as long as

> she could, on a target that played to her strengths: She tried to

> teach social skills to hospitals.

>

> In January 2005, I accompanied Sylvia to a surgical oncology clinic

at

> the National Institutes of Health's Clinical Center, the famous

> hospital in Bethesda where researchers study patients with rare

> disorders and test experimental treatments. Sylvia had a large

> metastatic tumor in her liver and had been referred to an

> interventional radiologist to undergo a radiofrequency thermal

> ablation procedure, in which a needle is guided into the tumor and

is

> used to deliver radiofrequency current that kills the cancerous

> tissue. As instructed, she reported to the clinic at 10:15 a.m. A

> nurse took her vital signs, and we settled down to wait -- and wait.

> As the morning wore on, other patients straggled in until the

waiting

> room was full. Staff members could offer no estimate of when she

would

> be seen and seemed surprised that we asked. We munched on crackers

and

> watched the clock. At 3:30, Sylvia finally met the specialist and

his

> medical team.

>

> Sylvia felt privileged to be treated at NIH, but that didn't stop

her

> from speaking out -- in her characteristically polite but direct

> style. When the radiologist finished describing his treatment plan

and

> asked whether she had questions, she shot back, " Yes. Why do you

keep

> your patients waiting for five hours? "

>

> The doctor was contrite but said that he had no control over

> scheduling. So, a few days later, Sylvia sent an e-mail message to

the

> Clinical Center's director, I. Gallin, describing her visit.

>

> " As a psychologist and health-care provider myself, " she wrote, " I

> wonder if there may be ways in which my experiences could alert you

to

> the possibility that sometimes 'the system' underestimates the

> tremendous sense of vulnerability of your patients. We are sick,

> grateful and afraid. Waiting for hours is not just inconvenient; it

is

> frightening and disempowering -- downright unhealthy. . . . If we

and

> the other patients knew that the system was set up respectfully and

if

> we had been given information, options or apologies, the situation

> would have felt entirely different. "

>

> Gallin reacted admirably. He called a meeting of department heads to

> review the management of the center's specialty clinics. He promptly

> apologized to Sylvia, writing, " I believe that the wait times you

> described should be tolerated under no circumstances. "

>

> On her ensuing visits to the NIH clinic, Sylvia found that the wait

> time had shortened dramatically. She felt so empowered by this

> response that she was convinced it improved her ability to fight her

> cancer. " It has been especially difficult for me to develop healing

> images about the liver, " she wrote in a e-mail. " The tumor is

growing

> so fast and seems so impervious. Then I thought of . . . sending

> precise, fierce probes into a troublesome NIH. This made it so much

> easier to think of the tumor as shakeable. "

>

> Gallin said in an interview several weeks ago that as a result of

> Sylvia's intervention, he has made reducing patient wait time a

> priority. " She taught us a lot, " he said. " She really galvanized the

> issue for us. . . . It wasn't really obvious to me how much of a

> problem it was until she sort of hit me between the eyes with a

> two-by-four. "

>

> Gallin abolished " block scheduling " -- the system of having the

day's

> patients all report to a clinic at the same time -- and replaced it

> with individual appointments. He said patients are now asked to

keep a

> log of how long they wait to see a doctor or to have a test or

> procedure, and to turn in this information to their clinic's head

> nurse. Department and section heads are now required to take steps

to

> reduce wait time and must report annually on their progress.

>

> Beyond Their Expertise

> Sylvia's liver treatment was successful. However, during the next

few

> months, the sarcoma spread like a western wildfire, flaring up in

one

> organ after another. To cope with a pelvic recurrence, Sylvia

traveled

> in May 2005 to Brigham and Women's Hospital in Boston to have a

> procedure called brachytherapy, in which radioactive needles are

> implanted into a tumor. She would have to lie immobilized in a

> lead-lined hospital room for three days. Because she would be

> radioactive, nurses and visitors would be able to spend only a few

> minutes at a time in her presence: She would be almost entirely

alone.

> Although she joked in an e-mail, " I'll be like Kryptonite, with the

> power to disable Superman, " Sylvia was terrified.

>

> During her stay at the hospital, several unrelated events combined

to

> magnify the anxiety and pain that she endured. Her iPod, which she

had

> counted on for distraction, was lost or stolen during the transfer

> from admissions to her room. An anesthesiologist belatedly changed

the

> planned method of pain control after she was already on the

operating

> table. Later that night, she awoke with intense pain and called for

a

> nurse, only to wait two hours for a response because, as the nurse

> later explained, she was " busy with an emergency. "

>

> " I wondered why I was not an emergency at this point, and sobbed as

I

> watched the clock, " she later recalled.

>

> She was discharged with painful bedsores caused by immobility and

was

> sent home without knowing how to take care of them.

>

> Sylvia later said she found this the most traumatic of her many

> hospital admissions. For weeks, persistent hip pain and muscle

> weakness were exacerbated by what she called a " fog " of anxiety.

>

> On a return visit to Boston in September, she tried to discuss her

> lingering concerns with her radiation oncologist but felt the doctor

> seemed uncomfortable. " She dropped some defenses at the end, " Sylvia

> wrote. " She was affected when I 'put it into words.' She said there

is

> a 'culture' at the hospital, 'I don't know where it comes from.' "

>

> Although weakened by her advancing cancer, Sylvia tried to address

> that culture. " I am concerned that the 'system' was unresponsive to

my

> emotional needs and my doctor was put in the position of not being

> able to protect me, " she wrote to Gustafson, vice president

of

> the Center for Clinical Excellence at Brigham and Women's/Faulkner

> Hospitals. " Somehow, a grasp of me as a person and a collaborator

was

> missing too often. "

>

> The hospital's official response was guarded; Gustafson referred her

> report to an ombudsman, or patient advocate, who investigated her

> complaints and sent her a written report several months later.

> Although Sylvia might have preferred a frank, face-to-face

discussion,

> by then she was too frail to travel to Boston. She said she was

glad,

> nevertheless, to learn that her letter had prompted some changes.

>

> Myron, a spokesman for Brigham and Women's Hospital, said

> Sylvia's experience was regrettable. " It's someone's personal

> experience, " he said. " We can't change that. But hopefully, it means

> that things will improve in the future. "

>

> Setting a Standard

> Sylvia's gold standard for how hospitals should function was an

> experience she had soon after her sarcoma was diagnosed -- an

> inpatient admission for radiation therapy at Sibley Memorial

Hospital,

> near her home in the District. Looking back on that hospital stay,

she

> acknowledged that she was healthier and less psychologically

> vulnerable at that time than during the later stages of her illness.

> Nevertheless, she insisted that the head nurse for that unit -- a

> woman whom she called " the nurse with the white hat " -- had

> established a system that made patients feel confident that their

> needs would be met.

>

> The most important rule was that if a patient rang a call button,

the

> staff member nearest to the patient's room -- whether a nurse, a

> technician or a janitor -- would respond immediately. The patient's

> request would then be relayed to the appropriate person. During her

> stay on this unit, Sylvia said, she always knew that she would be

> heard. She was sure that feeling calm and safe improved her body's

> response to the cancer treatment.

>

> Sylvia had many stays on other units at Sibley, and things did not

> always go so smoothly. When problems arose, she discussed them

> promptly with her caregivers -- sometimes with surprising results. A

> friend who visited her regularly in the hospital recalls a time when

> Sylvia was in severe pain and a nurse asked her repeatedly to

quantify

> her discomfort on a scale of 1 to 10. She finally

answered, " Eleven. "

> The nurse snapped, " The scale only goes to 10. I am a nurse. Answer

> the question. "

>

> The following day, when the same nurse entered the room, Sylvia took

> her hand, looked her in the eye and said, " Yesterday you were rude

to

> me. I was in a lot of pain and only wanted to convey that to you. "

>

> The nurse grasped Sylvia's other hand, sat down on her bed, and

said,

> " It doesn't have anything to do with you. I'm sorry. It's just the

way

> I am. I have cancer and have to take a lot of pain meds. "

>

> Even in the final months of her life, Sylvia's old spark would

return

> whenever she talked about the need for health-care workers to show,

by

> eye contact and body language, that they are listening and

responding

> -- transmitting the same social cues that she had always tried to

> teach to the children who were her patients.

> Getting that response, she said, " lets me know that I'm a human

being. " ·

> http://www.washingtonpost.com/wp-

dyn/content/article/2006/12/08/AR2006120801085.html

>

[Guest guest]

Dear Don,

So sorry for your frustrating experience.

I am not bored by it at all. I experience this type of treatment regularly

because I have a chronic and rare condition(porphyria) that presents with

various odd and, many times, frightening symptoms. I have dealt with this for

over 10 years and it should not be this way. You’d think since we are the

sufferers that they would treat us more kindly, but that does not seem to be

the case at all. I have often felt that medical staff get frustrated with me

because I do not fit anywhere in their pigeon hole board of common maladies and

their standard treatments. We do need change. Doctors and nurses need to LISTEN

to what the patient is telling them and then EXPLAIN what options we have for

treatment and help us choose the most beneficial course of action for our

circumstances. They are, after all, our paid consultants. The body belongs to

us so we should make our own decisions on treatment when we are able.

Thanks for sharing your story. Somehow

knowing I am not the only one who sees this problem helps a little and offers

hope for change. I hope you are feeling better and get a better explanation

soon. Your internet idea is great and I would love to see that happen too. For

me, nothing is worse than not knowing what is going on. Blessings! Tamarin

From: Flu [mailto:Flu ] On Behalf Of Don

Sent: Thursday, December 14, 2006

2:19 PM

Flu

Subject: [Flu] Re: How to

Make Yourself Heard in the Hospital

Interesting and timely article. I was hospitalized one

day last week

after going to the ER with an intestinal bleed at 10 PM. I was

finally admitted to the hospital at 6 AM. They estimated that I had

lost about two pints of blood and units were ordered for a

transfusion. When I finally stopped bleeding around 6 PM they

decided that I was regenerating blood fast enough to avoid the

transfusion, but they scheduled a colonoscopy and upper GI endoscopy

for the next morning to find out what was causing the bleeding.

After those two procedures, the GI doc told me nothing but dropped a

stack of literature on diverticulosis on my chest and disappeared. I

had no other communication from anyone until 27 hours later when they

said I was being discharged. I howled that no one had spoken to me

about my condition or the result of the procedures. So the attending

Dr finally came by and told me that I had diverticula up and down my

colon and that they were the likely cause of my bleeding. She said

that she was prescribing Prilosec for me. When I asked her what it

was, she explained that it was to counter acid in the stomach. I

told her that I had no experience of acid in the stomach and that she

had just told me that it was a problem in my colon and so why the

Prilosec. Her answer was, " Well if you don't want to take it you

don't have to. "

Well, I was furious. If there was a reason to take it I wanted to

know what that reason was, not be told that it was up to me whether

to take it or not. I wanted her to explain the rationale for taking

the medication, but she just seemed offended that I asked, and gave

her response as if I was impudent for questioning her. The truth is,

I don't think there was a good rationale. It is something you

prescribe when there has been a stomach bleed and there really isn't

anything you can do about bleeding diverticula in the colon except

wait for the bleeding to stop. I am not taking it, especially since

I have researched it and there is a danger associated with taking

Prilosec if you have high BP, which I do.

Well, I have been wanting to vent about that ever since it happened

and this article just prompted me to do it now. Sorry to bore you

all with my personal experience.

One other thing though. My hospital experience made me realize that

there would be a great benefit to having internet access in every

room of a hospital. I don't know if they can do wifi in the

hospital, but there should be some way for patients to get on the web

and research their condition and medications, not to mention allowing

them access to email. The patient is their own best advocate and if

they can do their own research, they have the best chance of getting

better sooner. Of course then they are likely to ask impudent

questions of their doctors, so it probably won't happen.

>

> How to Make Yourself Heard in the Hospital

> Tuesday, December 12, 2006; Page HE04

> The Joint Commission on Accreditation of Healthcare Organizations, a

> nonprofit organization that evaluates hospital care, recognizes the

> dangers of miscommunication in hospitals. " Sometimes caregivers

don't

> realize that how they deliver a message can shape a patient's

> perception of the care they receive, " says JCAHO media relations

> manager Charlene Hill.

>

> Here are some steps JCAHO recommends for a patient who feels he or

she

> is not being treated properly by a hospital staff member.

>

> 1. Address the staffer directly, explaining the problem. The staffer

> may be unaware of it.

>

> 2. Relay your complaint to the nursing supervisor.

>

> 3. Ask your primary care doctor to intercede for you in dealing

with a

> brusque hospital caregiver or clarifying insufficient information

from

> a specialist.

>

> 4. Enlist the help of a healthy friend or relative who can speak up

> and seek an explanation for a staffer's words or behavior.

>

> 5. Enlist the help of a supportive staffer.

>

> 6. Make your complaint known to the hospital's ombudsman. Most

> hospitals have one on staff.

>

> 7. If all else fails, register your complaint by contacting JCAHO at

> http://www.jcaho.org.

> http://www.washingtonpost.com/wp-

dyn/content/article/2006/12/08/AR2006120801705.html

>

> Teaching Hospitals How to Listen

> One Woman Struggled to Convince Administrators That Staff

> Responsiveness -- or Lack of It -- Affects Patient Outcome

> By Okie, Special to The Washington

Post

> Tuesday, December 12, 2006; Page HE01

> My friend Sylvia Stultz, who died of cancer in June, was a clinical

> psychologist whose passion was teaching social skills to autistic

> children. Until she became sick with a rare sarcoma, about two years

> ago, Sylvia ran therapeutic groups for such kids, helping them learn

> how to make friends, notice interpersonal cues and carry on ordinary

> conversations.

>

> Sylvia had enviable social skills: Although she lived alone, she

> maintained close connections with a large network of friends and

> relatives who supported her throughout her illness. Her directness

and

> sense of humor endeared her to her doctors, nurses and other

> caregivers, calling forth their best efforts on her behalf.

>

> However, as a cancer patient undergoing treatment at several

respected

> institutions in Washington and Boston, Sylvia noticed

intriguing

> parallels between her experiences in certain clinical settings and

her

> work with autistic children. She encountered striking differences in

> the cultures of the places where she received her care: While some

> hospitals and clinics seemed to encourage responsiveness and empathy

> among their staff members, others appeared to foster an atmosphere

in

> which patients often felt ignored and employees often seemed

reluctant

> even to make eye contact. Since Sylvia felt powerless to affect the

> course of her own illness, she focused her energies, for as long as

> she could, on a target that played to her strengths: She tried to

> teach social skills to hospitals.

>

> In January 2005, I accompanied Sylvia to a surgical oncology clinic

at

> the National Institutes of Health's Clinical Center,

the famous

> hospital in Bethesda

where researchers study patients with rare

> disorders and test experimental treatments. Sylvia had a large

> metastatic tumor in her liver and had been referred to an

> interventional radiologist to undergo a radiofrequency thermal

> ablation procedure, in which a needle is guided into the tumor and

is

> used to deliver radiofrequency current that kills the cancerous

> tissue. As instructed, she reported to the clinic at 10:15 a.m. A

> nurse took her vital signs, and we settled down to wait -- and wait.

> As the morning wore on, other patients straggled in until the

waiting

> room was full. Staff members could offer no estimate of when she

would

> be seen and seemed surprised that we asked. We munched on crackers

and

> watched the clock. At 3:30, Sylvia finally met the specialist and

his

> medical team.

>

> Sylvia felt privileged to be treated at NIH, but that didn't stop

her

> from speaking out -- in her characteristically polite but direct

> style. When the radiologist finished describing his treatment plan

and

> asked whether she had questions, she shot back, " Yes. Why do you

keep

> your patients waiting for five hours? "

>

> The doctor was contrite but said that he had no control over

> scheduling. So, a few days later, Sylvia sent an e-mail message to

the

> Clinical Center's director, I. Gallin, describing her visit.

>

> " As a psychologist and health-care provider myself, " she wrote,

" I

> wonder if there may be ways in which my experiences could alert you

to

> the possibility that sometimes 'the system' underestimates the

> tremendous sense of vulnerability of your patients. We are sick,

> grateful and afraid. Waiting for hours is not just inconvenient; it

is

> frightening and disempowering -- downright unhealthy. . . . If we

and

> the other patients knew that the system was set up respectfully and

if

> we had been given information, options or apologies, the situation

> would have felt entirely different. "

>

> Gallin reacted admirably. He called a meeting of department heads to

> review the management of the center's specialty clinics. He promptly

> apologized to Sylvia, writing, " I believe that the wait times you

> described should be tolerated under no circumstances. "

>

> On her ensuing visits to the NIH clinic, Sylvia found that the wait

> time had shortened dramatically. She felt so empowered by this

> response that she was convinced it improved her ability to fight her

> cancer. " It has been especially difficult for me to develop healing

> images about the liver, " she wrote in a e-mail. " The tumor is

growing

> so fast and seems so impervious. Then I thought of . . . sending

> precise, fierce probes into a troublesome NIH. This made it so much

> easier to think of the tumor as shakeable. "

>

> Gallin said in an interview several weeks ago that as a result of

> Sylvia's intervention, he has made reducing patient wait time a

> priority. " She taught us a lot, " he said. " She really

galvanized the

> issue for us. . . . It wasn't really obvious to me how much of a

> problem it was until she sort of hit me between the eyes with a

> two-by-four. "

>

> Gallin abolished " block scheduling " -- the system of having the

day's

> patients all report to a clinic at the same time -- and replaced it

> with individual appointments. He said patients are now asked to

keep a

> log of how long they wait to see a doctor or to have a test or

> procedure, and to turn in this information to their clinic's head

> nurse. Department and section heads are now required to take steps

to

> reduce wait time and must report annually on their progress.

>

> Beyond Their Expertise

> Sylvia's liver treatment was successful. However, during the next

few

> months, the sarcoma spread like a western wildfire, flaring up in

one

> organ after another. To cope with a pelvic recurrence, Sylvia

traveled

> in May 2005 to Brigham and Women's Hospital in Boston to have a

> procedure called brachytherapy, in which radioactive needles are

> implanted into a tumor. She would have to lie immobilized in a

> lead-lined hospital room for three days. Because she would be

> radioactive, nurses and visitors would be able to spend only a few

> minutes at a time in her presence: She would be almost entirely

alone.

> Although she joked in an e-mail, " I'll be like Kryptonite, with the

> power to disable Superman, " Sylvia was terrified.

>

> During her stay at the hospital, several unrelated events combined

to

> magnify the anxiety and pain that she endured. Her iPod, which she

had

> counted on for distraction, was lost or stolen during the transfer

> from admissions to her room. An anesthesiologist belatedly changed

the

> planned method of pain control after she was already on the

operating

> table. Later that night, she awoke with intense pain and called for

a

> nurse, only to wait two hours for a response because, as the nurse

> later explained, she was " busy with an emergency. "

>

> " I wondered why I was not an emergency at this point, and sobbed as

I

> watched the clock, " she later recalled.

>

> She was discharged with painful bedsores caused by immobility and

was

> sent home without knowing how to take care of them.

>

> Sylvia later said she found this the most traumatic of her many

> hospital admissions. For weeks, persistent hip pain and muscle

> weakness were exacerbated by what she called a " fog " of anxiety.

>

> On a return visit to Boston

in September, she tried to discuss her

> lingering concerns with her radiation oncologist but felt the doctor

> seemed uncomfortable. " She dropped some defenses at the end, "

Sylvia

> wrote. " She was affected when I 'put it into words.' She said there

is

> a 'culture' at the hospital, 'I don't know where it comes from.' "

>

> Although weakened by her advancing cancer, Sylvia tried to address

> that culture. " I am concerned that the 'system' was unresponsive to

my

> emotional needs and my doctor was put in the position of not being

> able to protect me, " she wrote to Gustafson, vice president

of

> the Center for Clinical Excellence at Brigham and Women's/Faulkner

> Hospitals. " Somehow, a grasp of me as a person and a collaborator

was

> missing too often. "

>

> The hospital's official response was guarded; Gustafson referred her

> report to an ombudsman, or patient advocate, who investigated her

> complaints and sent her a written report several months later.

> Although Sylvia might have preferred a frank, face-to-face

discussion,

> by then she was too frail to travel to Boston. She said she was

glad,

> nevertheless, to learn that her letter had prompted some changes.

>

> Myron, a spokesman for Brigham and Women's Hospital, said

> Sylvia's experience was regrettable. " It's someone's personal

> experience, " he said. " We can't change that. But hopefully, it

means

> that things will improve in the future. "

>

> Setting a Standard

> Sylvia's gold standard for how hospitals should function was an

> experience she had soon after her sarcoma was diagnosed -- an

> inpatient admission for radiation therapy at Sibley Memorial

Hospital,

> near her home in the District. Looking back on that hospital stay,

she

> acknowledged that she was healthier and less psychologically

> vulnerable at that time than during the later stages of her illness.

> Nevertheless, she insisted that the head nurse for that unit -- a

> woman whom she called " the nurse with the white hat " -- had

> established a system that made patients feel confident that their

> needs would be met.

>

> The most important rule was that if a patient rang a call button,

the

> staff member nearest to the patient's room -- whether a nurse, a

> technician or a janitor -- would respond immediately. The patient's

> request would then be relayed to the appropriate person. During her

> stay on this unit, Sylvia said, she always knew that she would be

> heard. She was sure that feeling calm and safe improved her body's

> response to the cancer treatment.

>

> Sylvia had many stays on other units at Sibley, and things did not

> always go so smoothly. When problems arose, she discussed them

> promptly with her caregivers -- sometimes with surprising results. A

> friend who visited her regularly in the hospital recalls a time when

> Sylvia was in severe pain and a nurse asked her repeatedly to

quantify

> her discomfort on a scale of 1 to 10. She finally

answered, " Eleven. "

> The nurse snapped, " The scale only goes to 10. I am a nurse. Answer

> the question. "

>

> The following day, when the same nurse entered the room, Sylvia took

> her hand, looked her in the eye and said, " Yesterday you were rude

to

> me. I was in a lot of pain and only wanted to convey that to you. "

>

> The nurse grasped Sylvia's other hand, sat down on her bed, and

said,

> " It doesn't have anything to do with you. I'm sorry. It's just the

way

> I am. I have cancer and have to take a lot of pain meds. "

>

> Even in the final months of her life, Sylvia's old spark would

return

> whenever she talked about the need for health-care workers to show,

by

> eye contact and body language, that they are listening and

responding

> -- transmitting the same social cues that she had always tried to

> teach to the children who were her patients.

> Getting that response, she said, " lets me know that I'm a human

being. " ·

> http://www.washingtonpost.com/wp-

dyn/content/article/2006/12/08/AR2006120801085.html

>

[Guest guest]

Thank you, Tamarin!

I think I may have discovered what caused my bleed. I took an

indomethacin in the morning (for heel pain that may be plantar

fasciitis) in addition to my daily dose of baby aspirin (heart attack

preventative). When I researched indomethacin, I found this:

" This medicine can also increase your risk of serious effects on the

stomach or intestines, including bleeding or perforation (forming of

a hole). These conditions can be fatal and gastrointestinal effects

can occur without warning at any time while you are taking

indomethacin. "

Great! Something else my doctor failed to tell me when he prescribed

it.

I have tossed out all the indomethacin and stopped taking the aspirin

on a daily basis.

-- Don

> >

> > How to Make Yourself Heard in the Hospital

> > Tuesday, December 12, 2006; Page HE04

> > The Joint Commission on Accreditation of Healthcare

Organizations, a

> > nonprofit organization that evaluates hospital care, recognizes

the

> > dangers of miscommunication in hospitals. " Sometimes caregivers

> don't

> > realize that how they deliver a message can shape a patient's

> > perception of the care they receive, " says JCAHO media relations

> > manager Charlene Hill.

> >

> > Here are some steps JCAHO recommends for a patient who feels he

or

> she

> > is not being treated properly by a hospital staff member.

> >

> > 1. Address the staffer directly, explaining the problem. The

staffer

> > may be unaware of it.

> >

> > 2. Relay your complaint to the nursing supervisor.

> >

> > 3. Ask your primary care doctor to intercede for you in dealing

> with a

> > brusque hospital caregiver or clarifying insufficient information

> from

> > a specialist.

> >

> > 4. Enlist the help of a healthy friend or relative who can speak

up

> > and seek an explanation for a staffer's words or behavior.

> >

> > 5. Enlist the help of a supportive staffer.

> >

> > 6. Make your complaint known to the hospital's ombudsman. Most

> > hospitals have one on staff.

> >

> > 7. If all else fails, register your complaint by contacting JCAHO

at

> > http://www.jcaho. <http://www.jcaho.org.> org.

> > http://www.washingt <http://www.washingtonpost.com/wp->

onpost.com/wp-

> dyn/content/article/2006/12/08/AR2006120801705.html

> >

> > Teaching Hospitals How to Listen

> > One Woman Struggled to Convince Administrators That Staff

> > Responsiveness -- or Lack of It -- Affects Patient Outcome

> > By Okie, Special to The Washington Post

> > Tuesday, December 12, 2006; Page HE01

> > My friend Sylvia Stultz, who died of cancer in June, was a

clinical

> > psychologist whose passion was teaching social skills to autistic

> > children. Until she became sick with a rare sarcoma, about two

years

> > ago, Sylvia ran therapeutic groups for such kids, helping them

learn

> > how to make friends, notice interpersonal cues and carry on

ordinary

> > conversations.

> >

> > Sylvia had enviable social skills: Although she lived alone, she

> > maintained close connections with a large network of friends and

> > relatives who supported her throughout her illness. Her

directness

> and

> > sense of humor endeared her to her doctors, nurses and other

> > caregivers, calling forth their best efforts on her behalf.

> >

> > However, as a cancer patient undergoing treatment at several

> respected

> > institutions in Washington and Boston, Sylvia noticed intriguing

> > parallels between her experiences in certain clinical settings

and

> her

> > work with autistic children. She encountered striking differences

in

> > the cultures of the places where she received her care: While some

> > hospitals and clinics seemed to encourage responsiveness and

empathy

> > among their staff members, others appeared to foster an

atmosphere

> in

> > which patients often felt ignored and employees often seemed

> reluctant

> > even to make eye contact. Since Sylvia felt powerless to affect

the

> > course of her own illness, she focused her energies, for as long

as

> > she could, on a target that played to her strengths: She tried to

> > teach social skills to hospitals.

> >

> > In January 2005, I accompanied Sylvia to a surgical oncology

clinic

> at

> > the National Institutes of Health's Clinical Center, the famous

> > hospital in Bethesda where researchers study patients with rare

> > disorders and test experimental treatments. Sylvia had a large

> > metastatic tumor in her liver and had been referred to an

> > interventional radiologist to undergo a radiofrequency thermal

> > ablation procedure, in which a needle is guided into the tumor

and

> is

> > used to deliver radiofrequency current that kills the cancerous

> > tissue. As instructed, she reported to the clinic at 10:15 a.m. A

> > nurse took her vital signs, and we settled down to wait -- and

wait.

> > As the morning wore on, other patients straggled in until the

> waiting

> > room was full. Staff members could offer no estimate of when she

> would

> > be seen and seemed surprised that we asked. We munched on

crackers

> and

> > watched the clock. At 3:30, Sylvia finally met the specialist and

> his

> > medical team.

> >

> > Sylvia felt privileged to be treated at NIH, but that didn't stop

> her

> > from speaking out -- in her characteristically polite but direct

> > style. When the radiologist finished describing his treatment

plan

> and

> > asked whether she had questions, she shot back, " Yes. Why do you

> keep

> > your patients waiting for five hours? "

> >

> > The doctor was contrite but said that he had no control over

> > scheduling. So, a few days later, Sylvia sent an e-mail message

to

> the

> > Clinical Center's director, I. Gallin, describing her visit.

> >

> > " As a psychologist and health-care provider myself, " she wrote, " I

> > wonder if there may be ways in which my experiences could alert

you

> to

> > the possibility that sometimes 'the system' underestimates the

> > tremendous sense of vulnerability of your patients. We are sick,

> > grateful and afraid. Waiting for hours is not just inconvenient;

it

> is

> > frightening and disempowering -- downright unhealthy. . . . If we

> and

> > the other patients knew that the system was set up respectfully

and

> if

> > we had been given information, options or apologies, the situation

> > would have felt entirely different. "

> >

> > Gallin reacted admirably. He called a meeting of department heads

to

> > review the management of the center's specialty clinics. He

promptly

> > apologized to Sylvia, writing, " I believe that the wait times you

> > described should be tolerated under no circumstances. "

> >

> > On her ensuing visits to the NIH clinic, Sylvia found that the

wait

> > time had shortened dramatically. She felt so empowered by this

> > response that she was convinced it improved her ability to fight

her

> > cancer. " It has been especially difficult for me to develop

healing

> > images about the liver, " she wrote in a e-mail. " The tumor is

> growing

> > so fast and seems so impervious. Then I thought of . . . sending

> > precise, fierce probes into a troublesome NIH. This made it so

much

> > easier to think of the tumor as shakeable. "

> >

> > Gallin said in an interview several weeks ago that as a result of

> > Sylvia's intervention, he has made reducing patient wait time a

> > priority. " She taught us a lot, " he said. " She really galvanized

the

> > issue for us. . . . It wasn't really obvious to me how much of a

> > problem it was until she sort of hit me between the eyes with a

> > two-by-four. "

> >

> > Gallin abolished " block scheduling " -- the system of having the

> day's

> > patients all report to a clinic at the same time -- and replaced

it

> > with individual appointments. He said patients are now asked to

> keep a

> > log of how long they wait to see a doctor or to have a test or

> > procedure, and to turn in this information to their clinic's head

> > nurse. Department and section heads are now required to take

steps

> to

> > reduce wait time and must report annually on their progress.

> >

> > Beyond Their Expertise

> > Sylvia's liver treatment was successful. However, during the next

> few

> > months, the sarcoma spread like a western wildfire, flaring up in

> one

> > organ after another. To cope with a pelvic recurrence, Sylvia

> traveled

> > in May 2005 to Brigham and Women's Hospital in Boston to have a

> > procedure called brachytherapy, in which radioactive needles are

> > implanted into a tumor. She would have to lie immobilized in a

> > lead-lined hospital room for three days. Because she would be

> > radioactive, nurses and visitors would be able to spend only a few

> > minutes at a time in her presence: She would be almost entirely

> alone.

> > Although she joked in an e-mail, " I'll be like Kryptonite, with

the

> > power to disable Superman, " Sylvia was terrified.

> >

> > During her stay at the hospital, several unrelated events

combined

> to

> > magnify the anxiety and pain that she endured. Her iPod, which

she

> had

> > counted on for distraction, was lost or stolen during the transfer

> > from admissions to her room. An anesthesiologist belatedly

changed

> the

> > planned method of pain control after she was already on the

> operating

> > table. Later that night, she awoke with intense pain and called

for

> a

> > nurse, only to wait two hours for a response because, as the nurse

> > later explained, she was " busy with an emergency. "

> >

> > " I wondered why I was not an emergency at this point, and sobbed

as

> I

> > watched the clock, " she later recalled.

> >

> > She was discharged with painful bedsores caused by immobility and

> was

> > sent home without knowing how to take care of them.

> >

> > Sylvia later said she found this the most traumatic of her many

> > hospital admissions. For weeks, persistent hip pain and muscle

> > weakness were exacerbated by what she called a " fog " of anxiety.

> >

> > On a return visit to Boston in September, she tried to discuss her

> > lingering concerns with her radiation oncologist but felt the

doctor

> > seemed uncomfortable. " She dropped some defenses at the end, "

Sylvia

> > wrote. " She was affected when I 'put it into words.' She said

there

> is

> > a 'culture' at the hospital, 'I don't know where it comes from.' "

> >

> > Although weakened by her advancing cancer, Sylvia tried to address

> > that culture. " I am concerned that the 'system' was unresponsive

to

> my

> > emotional needs and my doctor was put in the position of not being

> > able to protect me, " she wrote to Gustafson, vice

president

> of

> > the Center for Clinical Excellence at Brigham and Women's/Faulkner

> > Hospitals. " Somehow, a grasp of me as a person and a collaborator

> was

> > missing too often. "

> >

> > The hospital's official response was guarded; Gustafson referred

her

> > report to an ombudsman, or patient advocate, who investigated her

> > complaints and sent her a written report several months later.

> > Although Sylvia might have preferred a frank, face-to-face

> discussion,

> > by then she was too frail to travel to Boston. She said she was

> glad,

> > nevertheless, to learn that her letter had prompted some changes.

> >

> > Myron, a spokesman for Brigham and Women's Hospital, said

> > Sylvia's experience was regrettable. " It's someone's personal

> > experience, " he said. " We can't change that. But hopefully, it

means

> > that things will improve in the future. "

> >

> > Setting a Standard

> > Sylvia's gold standard for how hospitals should function was an

> > experience she had soon after her sarcoma was diagnosed -- an

> > inpatient admission for radiation therapy at Sibley Memorial

> Hospital,

> > near her home in the District. Looking back on that hospital

stay,

> she

> > acknowledged that she was healthier and less psychologically

> > vulnerable at that time than during the later stages of her

illness.

> > Nevertheless, she insisted that the head nurse for that unit -- a

> > woman whom she called " the nurse with the white hat " -- had

> > established a system that made patients feel confident that their

> > needs would be met.

> >

> > The most important rule was that if a patient rang a call button,

> the

> > staff member nearest to the patient's room -- whether a nurse, a

> > technician or a janitor -- would respond immediately. The

patient's

> > request would then be relayed to the appropriate person. During

her

> > stay on this unit, Sylvia said, she always knew that she would be

> > heard. She was sure that feeling calm and safe improved her body's

> > response to the cancer treatment.

> >

> > Sylvia had many stays on other units at Sibley, and things did not

> > always go so smoothly. When problems arose, she discussed them

> > promptly with her caregivers -- sometimes with surprising

results. A

> > friend who visited her regularly in the hospital recalls a time

when

> > Sylvia was in severe pain and a nurse asked her repeatedly to

> quantify

> > her discomfort on a scale of 1 to 10. She finally

> answered, " Eleven. "

> > The nurse snapped, " The scale only goes to 10. I am a nurse.

Answer

> > the question. "

> >

> > The following day, when the same nurse entered the room, Sylvia

took

> > her hand, looked her in the eye and said, " Yesterday you were

rude

> to

> > me. I was in a lot of pain and only wanted to convey that to you. "

> >

> > The nurse grasped Sylvia's other hand, sat down on her bed, and

> said,

> > " It doesn't have anything to do with you. I'm sorry. It's just

the

> way

> > I am. I have cancer and have to take a lot of pain meds. "

> >

> > Even in the final months of her life, Sylvia's old spark would

> return

> > whenever she talked about the need for health-care workers to

show,

> by

> > eye contact and body language, that they are listening and

> responding

> > -- transmitting the same social cues that she had always tried to

> > teach to the children who were her patients.

> > Getting that response, she said, " lets me know that I'm a human

> being. " .

> > http://www.washingt <http://www.washingtonpost.com/wp->

onpost.com/wp-

> dyn/content/article/2006/12/08/AR2006120801085.html

> >

>

[Guest guest]

Hi Don, I do not believe in better living through chemistry and

recommend you avoid such things.

http://en.wikipedia.org/wiki/Indomethacin

I like your idea about internet access in the hospital and think that

that is a very good reason to demand it in advance. Indeed, someone

should write to US News & World Report to suggest that in their annual

summer issue rating hospitals they include a hospital room internet

access survey.

Hi Tamarin,

I am sorry that you suffer with this

http://en.wikipedia.org/wiki/Porphyria

and agree with you that " our paid consultants " are often a worse curse

because they are a sort of a priesthood who like to keep knowledge to

themselves. But changes are on the way. The internet should come to

hospitals soon and it has already come to docs:

I posted an article a while ago about a good way to diagnose things

being to type all the symptoms into Google, because it will bring up

disease causes that a doc will not usually think of. Dr Google acts

as a check on the medical profession to make sure they make no mistake.

> >

> > Dear Don,

> >

> >

> >

> > So sorry for your frustrating experience. I am not bored by it at

> all. I

> > experience this type of treatment regularly because I have a

> chronic and

> > rare condition(porphyria) that presents with various odd and, many

> times,

> > frightening symptoms. I have dealt with this for over 10 years and

> it should

> > not be this way. You'd think since we are the sufferers that they

> would

> > treat us more kindly, but that does not seem to be the case at all.

> I have

> > often felt that medical staff get frustrated with me because I do

> not fit

> > anywhere in their pigeon hole board of common maladies and their

> standard

> > treatments. We do need change. Doctors and nurses need to LISTEN to

> what the

> > patient is telling them and then EXPLAIN what options we have for

> treatment

> > and help us choose the most beneficial course of action for our

> > circumstances. They are, after all, our paid consultants. The body

> belongs

> > to us so we should make our own decisions on treatment when we are

> able.

> >

> >

> >

> > Thanks for sharing your story. Somehow knowing I am not the only

> one who

> > sees this problem helps a little and offers hope for change. I hope

> you are

> > feeling better and get a better explanation soon. Your internet

> idea is

> > great and I would love to see that happen too. For me, nothing is

> worse than

> > not knowing what is going on. Blessings! Tamarin

> >

> >

> >

> > _____

> >

> > From: Flu

> [mailto:Flu ] On

> > Behalf Of Don

> > Sent: Thursday, December 14, 2006 2:19 PM

> > Flu

> > Subject: [Flu] Re: How to Make Yourself Heard in the

> Hospital

> >

> >

> >

> > Interesting and timely article. I was hospitalized one day last

> week

> > after going to the ER with an intestinal bleed at 10 PM. I was

> > finally admitted to the hospital at 6 AM. They estimated that I had

> > lost about two pints of blood and units were ordered for a

> > transfusion. When I finally stopped bleeding around 6 PM they

> > decided that I was regenerating blood fast enough to avoid the

> > transfusion, but they scheduled a colonoscopy and upper GI

> endoscopy

> > for the next morning to find out what was causing the bleeding.

> > After those two procedures, the GI doc told me nothing but dropped

> a

> > stack of literature on diverticulosis on my chest and disappeared.

> I

> > had no other communication from anyone until 27 hours later when

> they

> > said I was being discharged. I howled that no one had spoken to me

> > about my condition or the result of the procedures. So the

> attending

> > Dr finally came by and told me that I had diverticula up and down

> my

> > colon and that they were the likely cause of my bleeding. She said

> > that she was prescribing Prilosec for me. When I asked her what it

> > was, she explained that it was to counter acid in the stomach. I

> > told her that I had no experience of acid in the stomach and that

> she

> > had just told me that it was a problem in my colon and so why the

> > Prilosec. Her answer was, " Well if you don't want to take it you

> > don't have to. "

> >

> > Well, I was furious. If there was a reason to take it I wanted to

> > know what that reason was, not be told that it was up to me whether

> > to take it or not. I wanted her to explain the rationale for taking

> > the medication, but she just seemed offended that I asked, and gave

> > her response as if I was impudent for questioning her. The truth

> is,

> > I don't think there was a good rationale. It is something you

> > prescribe when there has been a stomach bleed and there really

> isn't

> > anything you can do about bleeding diverticula in the colon except

> > wait for the bleeding to stop. I am not taking it, especially since

> > I have researched it and there is a danger associated with taking

> > Prilosec if you have high BP, which I do.

> >

> > Well, I have been wanting to vent about that ever since it happened

> > and this article just prompted me to do it now. Sorry to bore you

> > all with my personal experience.

> >

> > One other thing though. My hospital experience made me realize that

> > there would be a great benefit to having internet access in every

> > room of a hospital. I don't know if they can do wifi in the

> > hospital, but there should be some way for patients to get on the

> web

> > and research their condition and medications, not to mention

> allowing

> > them access to email. The patient is their own best advocate and if

> > they can do their own research, they have the best chance of

> getting

> > better sooner. Of course then they are likely to ask impudent

> > questions of their doctors, so it probably won't happen.

[Guest guest]

Thank you for your sympathies, Lee. It is

a terrible malady! Porphyrics often experience cytokine storm with acute

attacks. My variant, Hereditary Coproporphyria(HCP) has the lovely twist of

progressively chronic symptoms resulting from nerve damage and multiple

chemical sensitivities that trigger more reactions. In other words, if I have a

reaction to an herbicide because the neighbors had a chemlawn treatment, while

I am dealing with that attack, I will develop sensitivities to other things

like perfume or candles or other “ordinary” household items. Each

patient has their own “laundry list” of typical signs of attack

depending on which nerves have been damaged. Mine tend toward pulmonary and

cardiac symptoms as well as nerve pain in my left arm, leg and back. I also

have the most common symptoms of nausea and severe abdominal pain and

constipation…almost every porphyric has those. One of the worst things

that happens is that doctors say that porphyria is so rare that I cannot have

that and insist that the diagnosis is wrong. Then when they try to find other

reasons for my symptoms and nothing presents, they say I am a hypochondriac.

This aspect really adds to the suffering.

The doctors really need to be using the

internet in my opinion. Today, for example, I was seen in the er for acute back

pain that spreads to my hips and legs apparently brought on by lying flat in an

MRI machine for an hour on Monday. The pain kept getting worse and I could not

get up and walk anymore so I had to be seen. I told the nice doctor about my

porphyria and long list of adverse reactions to drugs. She prescribed for me a

new muscle relaxer (metaxalone) along with a pain reliever. Being wise after

many experiences, I looked metaxalone up on drugs.com. The first

contraindication listed was porphyria! Now I am without the muscle relaxer and

since pain relievers are not so great with nerve pain, I am really not much

better off after having wasted several hours and a $200 co pay!!! Experiences

like these are the reason I cannot afford to pay my own way to see a porphyria

specialist in another part of the country. There are none nearby. If I call the

er back and ask for more meds they will accuse me of being a drug-seeker. So I

just suffer. If the doc had simply looked it up, she could have looked for a

porphyria safe drug and I would be much more comfortable I am sure. Ah, well…life

goes on, even when idealistic dreams are shattered and injustices prevail.

Blessings! Tamarin

From: Flu [mailto:Flu ] On Behalf Of Lee

Sent: Saturday, December 16, 2006

10:36 PM

Flu

Subject: [Flu] Re: How to

Make Yourself Heard in the Hospital

Hi Don, I do not believe in better living through

chemistry and

recommend you avoid such things.

http://en.wikipedia.org/wiki/Indomethacin

I like your idea about internet access in the hospital and think that

that is a very good reason to demand it in advance. Indeed, someone

should write to US News & World Report to suggest that in their annual

summer issue rating hospitals they include a hospital room internet

access survey.

Hi Tamarin,

I am sorry that you suffer with this

http://en.wikipedia.org/wiki/Porphyria

and agree with you that " our paid consultants " are often a worse

curse

because they are a sort of a priesthood who like to keep knowledge to

themselves. But changes are on the way. The internet should come to

hospitals soon and it has already come to docs:

I posted an article a while ago about a good way to diagnose things

being to type all the symptoms into Google, because it will bring up

disease causes that a doc will not usually think of. Dr Google acts

as a check on the medical profession to make sure they make no mistake.

> >

> > Dear Don,

> >

> >

> >

> > So sorry for your frustrating experience. I am not bored by it at

> all. I

> > experience this type of treatment regularly because I have a

> chronic and

> > rare condition(porphyria) that presents with various odd and,

many

> times,

> > frightening symptoms. I have dealt with this for over 10 years and

> it should

> > not be this way. You'd think since we are the sufferers that they

> would

> > treat us more kindly, but that does not seem to be the case at all.

> I have

> > often felt that medical staff get frustrated with me because I do

> not fit

> > anywhere in their pigeon hole board of common maladies and their

> standard

> > treatments. We do need change. Doctors and nurses need to LISTEN to

> what the

> > patient is telling them and then EXPLAIN what options we have for

> treatment

> > and help us choose the most beneficial course of action for our

> > circumstances. They are, after all, our paid consultants. The body

> belongs

> > to us so we should make our own decisions on treatment when we are

> able.

> >

> >

> >

> > Thanks for sharing your story. Somehow knowing I am not the only

> one who

> > sees this problem helps a little and offers hope for change. I hope

> you are

> > feeling better and get a better explanation soon. Your internet

> idea is

> > great and I would love to see that happen too. For me, nothing is

> worse than

> > not knowing what is going on. Blessings! Tamarin

> >

> >

> >

> > _____

> >

> > From: Flu

> [mailto:Flu ]

On

> > Behalf Of Don

> > Sent: Thursday, December 14, 2006 2:19 PM

> > Flu

> > Subject: [Flu] Re: How to Make Yourself Heard in the

> Hospital

> >

> >

> >

> > Interesting and timely article. I was hospitalized one day last

> week

> > after going to the ER with an intestinal bleed at 10 PM. I was

> > finally admitted to the hospital at 6 AM. They estimated that I had

> > lost about two pints of blood and units were ordered for a

> > transfusion. When I finally stopped bleeding around 6 PM they

> > decided that I was regenerating blood fast enough to avoid the

> > transfusion, but they scheduled a colonoscopy and upper GI

> endoscopy

> > for the next morning to find out what was causing the bleeding.

> > After those two procedures, the GI doc told me nothing but dropped

> a

> > stack of literature on diverticulosis on my chest and disappeared.

> I

> > had no other communication from anyone until 27 hours later when

> they

> > said I was being discharged. I howled that no one had spoken to me

> > about my condition or the result of the procedures. So the

> attending

> > Dr finally came by and told me that I had diverticula up and down

> my

> > colon and that they were the likely cause of my bleeding. She said

> > that she was prescribing Prilosec for me. When I asked her what it

> > was, she explained that it was to counter acid in the stomach. I

> > told her that I had no experience of acid in the stomach and that

> she

> > had just told me that it was a problem in my colon and so why the

> > Prilosec. Her answer was, " Well if you don't want to take it you

> > don't have to. "

> >

> > Well, I was furious. If there was a reason to take it I wanted to

> > know what that reason was, not be told that it was up to me whether

> > to take it or not. I wanted her to explain the rationale for taking

> > the medication, but she just seemed offended that I asked, and gave

> > her response as if I was impudent for questioning her. The truth

> is,

> > I don't think there was a good rationale. It is something you

> > prescribe when there has been a stomach bleed and there really

> isn't

> > anything you can do about bleeding diverticula in the colon except

> > wait for the bleeding to stop. I am not taking it, especially since

> > I have researched it and there is a danger associated with taking

> > Prilosec if you have high BP, which I do.

> >

> > Well, I have been wanting to vent about that ever since it happened

> > and this article just prompted me to do it now. Sorry to bore you

> > all with my personal experience.

> >

> > One other thing though. My hospital experience made me realize that

> > there would be a great benefit to having internet access in every

> > room of a hospital. I don't know if they can do wifi in the

> > hospital, but there should be some way for patients to get on the

> web

> > and research their condition and medications, not to mention

> allowing

> > them access to email. The patient is their own best advocate and if

> > they can do their own research, they have the best chance of

> getting

> > better sooner. Of course then they are likely to ask impudent

> > questions of their doctors, so it probably won't happen.

[Guest guest]

Wow! It is a terrible malady. As for their insisting that you cannot

have that malady, I keep a copy of all documents in my medical file

and ask doctors for a copy of their session notes so that I can

include that in my file.

When you see a new specialist, hand him a copy of any important pages

in your file. Copies of five or ten pages should do the trick. Make

the copies and staple them together and hand it to him. That way the

evidence will be staring him in the face that previous physicians have

reached a conclusion that he should not bother questioning. Or

indeed, if you prefer, hand him a copy of your entire file.

Sounds to me like porphyria sufferers need to band together to demand

good medical care. Have they? Perhaps you should start a porphyria

egroup on ?

Do you know that victims of lightning stroke suffered in isolation for

years? Then the internet came along. Suddenly people who had been

struck by lightning banded together. And the medical community was

shocked. It seems that no one had realized that they all had the same

problems due to the massive jolt of lightning that they had survived.

So try to get people to organize. Demand better medical care.

>

> Thank you for your sympathies, Lee. It is a terrible malady! Porphyrics

> often experience cytokine storm with acute attacks. My variant,

Hereditary

> Coproporphyria(HCP) has the lovely twist of progressively chronic

symptoms

> resulting from nerve damage and multiple chemical sensitivities that

trigger

> more reactions. In other words, if I have a reaction to an herbicide

because

> the neighbors had a chemlawn treatment, while I am dealing with that

attack,

> I will develop sensitivities to other things like perfume or candles or

> other " ordinary " household items. Each patient has their own

" laundry list "

> of typical signs of attack depending on which nerves have been

damaged. Mine

> tend toward pulmonary and cardiac symptoms as well as nerve pain in

my left

> arm, leg and back. I also have the most common symptoms of nausea

and severe

> abdominal pain and constipation.almost every porphyric has those.

One of the

> worst things that happens is that doctors say that porphyria is so

rare that

> I cannot have that and insist that the diagnosis is wrong. Then when

they

> try to find other reasons for my symptoms and nothing presents, they

say I

> am a hypochondriac. This aspect really adds to the suffering.

>

>

>

> The doctors really need to be using the internet in my opinion.

Today, for

> example, I was seen in the er for acute back pain that spreads to my

hips

> and legs apparently brought on by lying flat in an MRI machine for

an hour

> on Monday. The pain kept getting worse and I could not get up and walk

> anymore so I had to be seen. I told the nice doctor about my

porphyria and

> long list of adverse reactions to drugs. She prescribed for me a new

muscle

> relaxer (metaxalone) along with a pain reliever. Being wise after many

> experiences, I looked metaxalone up on drugs.com. The first

contraindication

> listed was porphyria! Now I am without the muscle relaxer and since pain

> relievers are not so great with nerve pain, I am really not much

better off

> after having wasted several hours and a $200 co pay!!! Experiences like

> these are the reason I cannot afford to pay my own way to see a

porphyria

> specialist in another part of the country. There are none nearby. If

I call

> the er back and ask for more meds they will accuse me of being a

> drug-seeker. So I just suffer. If the doc had simply looked it up,

she could

> have looked for a porphyria safe drug and I would be much more

comfortable I

> am sure. Ah, well.life goes on, even when idealistic dreams are

shattered

> and injustices prevail. Blessings! Tamarin

[Guest guest]

Well, there are a few egroups out there.

porphyria/

Porph/

porphgroup/

[Guest guest]

Thanks Lee, as I said, I tossed the Indomethacin.

I think that there will be a lot of resistance to internet in the

hospital room because the last thing the docs want is an informed,

inquisitive patient. It is a threat to the priesthood and may force

them to either admit that they might be wrong in some cases, or to do

more research, or just to take the time to answer questions and

address concerns.

Tamarin, I am so sorry that you suffer with porphyria. It sounds

horrible.

> > >

> > > Dear Don,

> > >

> > >

> > >

> > > So sorry for your frustrating experience. I am not bored by it

at

> > all. I

> > > experience this type of treatment regularly because I have a

> > chronic and

> > > rare condition(porphyria) that presents with various odd and,

many

> > times,

> > > frightening symptoms. I have dealt with this for over 10 years

and

> > it should

> > > not be this way. You'd think since we are the sufferers that

they

> > would

> > > treat us more kindly, but that does not seem to be the case at

all.

> > I have

> > > often felt that medical staff get frustrated with me because I

do

> > not fit

> > > anywhere in their pigeon hole board of common maladies and

their

> > standard

> > > treatments. We do need change. Doctors and nurses need to

LISTEN to

> > what the

> > > patient is telling them and then EXPLAIN what options we have

for

> > treatment

> > > and help us choose the most beneficial course of action for our

> > > circumstances. They are, after all, our paid consultants. The

body

> > belongs

> > > to us so we should make our own decisions on treatment when we

are

> > able.

> > >

> > >

> > >

> > > Thanks for sharing your story. Somehow knowing I am not the

only

> > one who

> > > sees this problem helps a little and offers hope for change. I

hope

> > you are

> > > feeling better and get a better explanation soon. Your internet

> > idea is

> > > great and I would love to see that happen too. For me, nothing

is

> > worse than

> > > not knowing what is going on. Blessings! Tamarin

> > >

> > >

> > >

> > > _____

> > >

> > > From: Flu

> > [mailto:Flu ] On

> > > Behalf Of Don

> > > Sent: Thursday, December 14, 2006 2:19 PM

> > > Flu

> > > Subject: [Flu] Re: How to Make Yourself Heard in the

> > Hospital

> > >

> > >

> > >

> > > Interesting and timely article. I was hospitalized one day last

> > week

> > > after going to the ER with an intestinal bleed at 10 PM. I was

> > > finally admitted to the hospital at 6 AM. They estimated that I

had

> > > lost about two pints of blood and units were ordered for a

> > > transfusion. When I finally stopped bleeding around 6 PM they

> > > decided that I was regenerating blood fast enough to avoid the

> > > transfusion, but they scheduled a colonoscopy and upper GI

> > endoscopy

> > > for the next morning to find out what was causing the bleeding.

> > > After those two procedures, the GI doc told me nothing but

dropped

> > a

> > > stack of literature on diverticulosis on my chest and

disappeared.

> > I

> > > had no other communication from anyone until 27 hours later

when

> > they

> > > said I was being discharged. I howled that no one had spoken to

me

> > > about my condition or the result of the procedures. So the

> > attending

> > > Dr finally came by and told me that I had diverticula up and

down

> > my

> > > colon and that they were the likely cause of my bleeding. She

said

> > > that she was prescribing Prilosec for me. When I asked her what

it

> > > was, she explained that it was to counter acid in the stomach.

I

> > > told her that I had no experience of acid in the stomach and

that

> > she

> > > had just told me that it was a problem in my colon and so why

the

> > > Prilosec. Her answer was, " Well if you don't want to take it

you

> > > don't have to. "

> > >

> > > Well, I was furious. If there was a reason to take it I wanted

to

> > > know what that reason was, not be told that it was up to me

whether

> > > to take it or not. I wanted her to explain the rationale for

taking

> > > the medication, but she just seemed offended that I asked, and

gave

> > > her response as if I was impudent for questioning her. The

truth

> > is,

> > > I don't think there was a good rationale. It is something you

> > > prescribe when there has been a stomach bleed and there really

> > isn't

> > > anything you can do about bleeding diverticula in the colon

except

> > > wait for the bleeding to stop. I am not taking it, especially

since

> > > I have researched it and there is a danger associated with

taking

> > > Prilosec if you have high BP, which I do.

> > >

> > > Well, I have been wanting to vent about that ever since it

happened

> > > and this article just prompted me to do it now. Sorry to bore

you

> > > all with my personal experience.

> > >

> > > One other thing though. My hospital experience made me realize

that

> > > there would be a great benefit to having internet access in

every

> > > room of a hospital. I don't know if they can do wifi in the

> > > hospital, but there should be some way for patients to get on

the

> > web

> > > and research their condition and medications, not to mention

> > allowing

> > > them access to email. The patient is their own best advocate

and if

> > > they can do their own research, they have the best chance of

> > getting

> > > better sooner. Of course then they are likely to ask impudent

> > > questions of their doctors, so it probably won't happen.

>

[Guest guest]

Yes, Don, anyone who tries to educate

themselves and help find out what is wrong is thought to have hypochondriasis

in my experience and I have seen 38 doctors of varying specialties in the last

five years. Most of them wrote in my record that I had psychosomatic symptoms

even AFTER they found a schwannoma the size of a small orange in my vagus nerve

that was pressing on my carotid artery and jugular vein. I am not sure how they

thought I had raised my sed rate and white blood cell count! Be careful…a

trustworthy doc who listens is hard to find. Blessings! Tamarin

From: Flu [mailto:Flu ] On Behalf Of Don

Sent: Sunday, December 17, 2006

12:43 PM

Flu

Subject: [Flu] Re: How to

Make Yourself Heard in the Hospital

Thanks Lee, as I said, I tossed the Indomethacin.

I think that there will be a lot of resistance to internet in the

hospital room because the last thing the docs want is an informed,

inquisitive patient. It is a threat to the priesthood and may force

them to either admit that they might be wrong in some cases, or to do

more research, or just to take the time to answer questions and

address concerns.

Tamarin, I am so sorry that you suffer with porphyria. It sounds

horrible.

> > >

> > > Dear Don,

> > >

> > >

> > >

> > > So sorry for your frustrating experience. I am not bored by it

at

> > all. I

> > > experience this type of treatment regularly because I have a

> > chronic and

> > > rare condition(porphyria) that presents with various odd

and,

many

> > times,

> > > frightening symptoms. I have dealt with this for over 10 years

and

> > it should

> > > not be this way. You'd think since we are the sufferers that

they

> > would

> > > treat us more kindly, but that does not seem to be the case at

all.

> > I have

> > > often felt that medical staff get frustrated with me because I

do

> > not fit

> > > anywhere in their pigeon hole board of common maladies and

their

> > standard

> > > treatments. We do need change. Doctors and nurses need to

LISTEN to

> > what the

> > > patient is telling them and then EXPLAIN what options we have

for

> > treatment

> > > and help us choose the most beneficial course of action for our

> > > circumstances. They are, after all, our paid consultants. The

body

> > belongs

> > > to us so we should make our own decisions on treatment when we

are

> > able.

> > >

> > >

> > >

> > > Thanks for sharing your story. Somehow knowing I am not the

only

> > one who

> > > sees this problem helps a little and offers hope for change. I

hope

> > you are

> > > feeling better and get a better explanation soon. Your internet

> > idea is

> > > great and I would love to see that happen too. For me, nothing

is

> > worse than

> > > not knowing what is going on. Blessings! Tamarin

> > >

> > >

> > >

> > > _____

> > >

> > > From: Flu

> > [mailto:Flu ]

On

> > > Behalf Of Don

> > > Sent: Thursday, December 14, 2006 2:19 PM

> > > Flu

> > > Subject: [Flu] Re: How to Make Yourself Heard in the

> > Hospital

> > >

> > >

> > >

> > > Interesting and timely article. I was hospitalized one day last

> > week

> > > after going to the ER with an intestinal bleed at 10 PM. I was

> > > finally admitted to the hospital at 6 AM. They estimated that I

had

> > > lost about two pints of blood and units were ordered for a

> > > transfusion. When I finally stopped bleeding around 6 PM they

> > > decided that I was regenerating blood fast enough to avoid the

> > > transfusion, but they scheduled a colonoscopy and upper GI

> > endoscopy

> > > for the next morning to find out what was causing the bleeding.

> > > After those two procedures, the GI doc told me nothing but

dropped

> > a

> > > stack of literature on diverticulosis on my chest and

disappeared.

> > I

> > > had no other communication from anyone until 27 hours later

when

> > they

> > > said I was being discharged. I howled that no one had spoken to

me

> > > about my condition or the result of the procedures. So the

> > attending

> > > Dr finally came by and told me that I had diverticula up and

down

> > my

> > > colon and that they were the likely cause of my bleeding. She

said

> > > that she was prescribing Prilosec for me. When I asked her what

it

> > > was, she explained that it was to counter acid in the stomach.

I

> > > told her that I had no experience of acid in the stomach and

that

> > she

> > > had just told me that it was a problem in my colon and so why

the

> > > Prilosec. Her answer was, " Well if you don't want to take

it

you

> > > don't have to. "

> > >

> > > Well, I was furious. If there was a reason to take it I wanted

to

> > > know what that reason was, not be told that it was up to me

whether

> > > to take it or not. I wanted her to explain the rationale for

taking

> > > the medication, but she just seemed offended that I asked, and

gave

> > > her response as if I was impudent for questioning her. The

truth

> > is,

> > > I don't think there was a good rationale. It is something you

> > > prescribe when there has been a stomach bleed and there really

> > isn't

> > > anything you can do about bleeding diverticula in the colon

except

> > > wait for the bleeding to stop. I am not taking it, especially

since

> > > I have researched it and there is a danger associated with

taking

> > > Prilosec if you have high BP, which I do.

> > >

> > > Well, I have been wanting to vent about that ever since it

happened

> > > and this article just prompted me to do it now. Sorry to bore

you

> > > all with my personal experience.

> > >

> > > One other thing though. My hospital experience made me realize

that

> > > there would be a great benefit to having internet access in

every

> > > room of a hospital. I don't know if they can do wifi in the

> > > hospital, but there should be some way for patients to get on

the

> > web

> > > and research their condition and medications, not to mention

> > allowing

> > > them access to email. The patient is their own best advocate

and if

> > > they can do their own research, they have the best chance of

> > getting

> > > better sooner. Of course then they are likely to ask impudent

> > > questions of their doctors, so it probably won't happen.

>