Today, I head to a Rheumotalogist. This is a doctor who, according to dictionary.com, "mainly deal with clinical problems involving joints, soft tissues and allied conditions of connective tissues". In the least decade or so, they've also been tapped into for their skills in autoimmunology. In Las Vegas, a doctor who is skilled is a rarity, and a doctor who has compassion is nearly unheard of-and today, I ran across a professional who is both.
Dr. Timothy Kelly has practiced for 21 years, studying here in Nevada, and keeping his practice in the land of silicon breasts and dancers knees. I read about Dr. Kelly after being referred to him. I had typed his name into Google and Yahoo, and found listings of about a dozen "Doctor Rating Services".
The internet has spawned a plethora of sites that cater to what "sucks" and what "fails", but it's rare to find any site that promotes the positive aspects of anyone or anything. It seems the medical community has been the breeding ground for sites that are venomous at best. In fact, I was told my own blog- which is completely based on personal experiences- can be viewed as a direct slam of the medical community at large. In fact, it's a warning notice for those who want to avoid the painful results of badly managed health care. And today, it's a grateful acknowledgment that there are doctors who believe in the ethic of "First, do NO harm." But, I wanted to point out a few of the "review" sites, for your own bookmarks.
I found one complaint on Dr. Kelly. One. It was listed on several sites, however, and that is one of the issues I have with any sites that claim to offer reports. A single source becomes the only source of information for most. There is a sharing of information based on Search Engine discovery. Or, there is a single person who signs on to multiple sites, copying and pasting the same complaint. When you search a doctor's name- you will then find dozens of complaints listed, while reading further apprises you to the fact that there is a sole complaint. It's how I read the same report a few dozen times on St. Rose Hospital last week regarding their billing department failure for one patient. Search engines listed three complaints against Dr. Kelly, and it turned out to be the same one complaint from a Fibromyalgia patient who didn't get the response she needed from him.
When I walked into Dr. Kelly's office, I met his staff, who were fun, lively, and didn't make me feel inferior in any way. The office is the first one in the medical center, meaning those of us who use walking assistance don't have to struggle far. Dr. Kelly walked in to meet me just a short time after I filled out paperwork, and he was probably the most attentive doctor I have met in at least 20 years. He read my history, and he looked through my medications. He talked to me with empathy, and true understanding of my condition. He made me feel human. It was a breakthrough for the treatment I've received over the last few years which has been hurried at best. He knew my condition well, understood what I was supposed to be concerned with at this stage, and got that my disability was often a struggle for me. I really LIKED this doctor. I left there feeling a renewed hope that my primary care doctor would get a comprehensive understanding of my condition from this specialist. Now comes my duty as a patient advocate- I have to let all the Doctor Rating Sites know of the positive aspect of his practice, to counter the one comment of negative I found- and I found to be not remotely close to my experience.
What sites offer Doctor ratings via patient input? Which ones are reliable, or which are mostly great at finding information regarding licensing censures or other decisions passed down through AMA? First, start with your state medical board. The California Medical Board site has a great example of how you can view the history of your doctor. You simply do a search of the name, and you can see if any cases or complaints were filed. Most state websites have this available in the United States. Overseas, you may need to view the agency that gave your doctor credentials. In these instances, you view factual information and you don't get the full story- as it generally is protected by law.
But there are sites that are available for your input. One of these is RateMDs.com, and the failure of this sort of site is the basic issue of not having a well-rounded review of a doctor from a polled pool of patients. You get gut responses from people who have strong opinions. Other sites offer doctor information- as paid for by the physician, but don't carry listings of ratings. The doctor pays to be listed on a review site, and hopes that the patients will sing praises to the world.
Companies like HarrisPollOnline.com monitor patient responses regarding general health care, specific medical organizations, or even specific practices. Kaiser Health and other organizations use polling companies to help determine the areas that need to be improved upon, and others that have done well. If you want to make a change in the health system, you would do well to respond to surveys that are directly impacting the organization which carry your doctors.
But, if you want a general overall feel of what your upcoming appointment will be like in a practice- sites such as CitySearch or even Local.Yahoo, because the comments placed on these portals are similar to those you'd find for ANYONE you'd employ. You'll find a doctor rating in your local strip mall next to the rating for the pizza parlor in the same strip mall. The information is less personal, but offers customer service responses rather than detailed medical procedural information.
In the last six months, several well established medical journals have complained harshly against sites such as RateMD.com or HealthGrades.com. Most validly point out that the doctor doesn't have any chance to offer his side of a rant. But, those of us who are willing to read past a complaint will get information we need. If, for instance, one person appears to rail against a practice, yet doesn't offer specifics, it will generally come across as bad apples, and not as factual information. If specifics are clear, and seem to echo others' opinions, then a patient is better armed against what may be an unpleasant appointment. A wise patient will also note if the same person seems to rant against ALL doctors he or she comes across. It's true that most health care agencies are struggling against negative comments, but it's also true that one person doesn't speak for hundreds who may have another experience.
Those of us who do want to change the way patients are treated for specific illnesses, specific issues, and even by specific agencies, do so by actively contacting and educating our medical professionals. We spend time educating others regarding our own conditions. We may have occasion to point out failures publicly, as a warning to both patient AND medical facility... we want our Patient's Rights to be adhered to, and we want doctors to First Do No Harm. Last week, I had an experience that was a result of mishandled care by nurses and doctors in an emergency room. This week, I had the experience of having a caring, compassionate doctor who was willing to listen. Unfortunately, the complaints will make more people pay attention than the praises. That is the stripes of the tiger known as Internet.
Today's Questions- What sites do you find useful in learning about medical professionals? Have you decided to not use, or to use, a specific practice based on comments left online? What positive things have you learned by researching your doctors? Negative?
Tuesday, April 28, 2009
Monday, April 20, 2009
An Open Letter to Emergency Room Staff
Last night I had the misfortune of having to be in an emergency room. I only went after not being able to breathe and losing hearing in my right ear. I left sicker than when I got there, and I am furious at the quality of care imparted. This was a good hospital- and previous visits for the husband's illness were absolutely easy. Mine, as a disabled female patient, was an entirely different matter.
I heard other patients admitted. A senior who had gotten so drunk he wasn't able to stand up. A woman who had diverticulitis, but whose white husband was doing all the talking. Two other women had sutures, and were in and out before I was even seen. Here is my open letter to the St. Rose Hospital in Las Vegas. (Names abridged until hospital responds.)
Dear Public "relations",
Dr. F. is going to kill someone. Last night, I thought it was going to be me. I have been in an emergency room 3 times in the last 20 years. Three. I don't go because I need attention I go because I need help NOW. I have two chronic conditions- Ehlers-Danlos, a connective tissue disorder, and Hashimoto's Thyroiditis- an autoimmune disorder. ANY doctor with ANY cardiac experience NEEDS to know this because if I get infections, it attacks my heart. I tell this emergency room "pretty boy" that I have Ehlers- Danlos and his response is "So what is that? Why do I care?" I try to tell him and he's already 20 feet away, back to me. And it happened again, later in the evening.
I came in from the airport, with a nasty infection in my ears - spinning room and all. It's relevant. I had been exposed to children with illness, it's relevant. But, with an intake nurse watching my husband's tattoos, and asking more questions about that- all I got to hear about was "Sinus infection" in the Vegas Valley. I hadn't come in from the Vegas Valley, I'd come in from Los Angeles.
Still, that's an infection. I saw a doctor two HOURS after getting there. (Six months before, my husband was seen for a fistula in less than 10 minutes.) I couldn't breathe, and was given a nebulizer treatment. This caused mucous to pour from my sinuses- and I was gagging on yellow chunks- Dr. reaction was "Swish with peroxide".
I continue gagging and vomiting air for 2 hours, and I hear Nurse 1 and Nurse 2 talking about their music, food, hip replacements, and oh yeah, I wasn't given antibiotics, pain meds, or even a second glance by the doctor after the "swish". My throat at this point is starting to bleed from the vomiting. NO one cares. THEN, I walk up to the nurses station, IN FRONT OF MY BAY, and ask for the pain meds again. It's now 9:34, and the intake nurse said I'd get them within the hour I arrived.
Right. Okay. I get back to the bed, and my left patella is now slid. Ehlers- Danlos. Nurse 1 walks up and tells me to get this pregnancy test. I'm told "Hospital policy". I've been to the bathroom three times, and could have taken one ANY of those times. I get told they need x-rays? For my throat? I'm gagging on mucous, not a nodule from Hashimoto's. I tell Nurse 1 my patella is out of joint, and I can't walk. I get handed a bed pan. I am now sitting on wet sheets- never once got asked if I wanted a blanket, or even tissues to wipe up the spit vomit- I brought my own. I see Nurse 2 (hip replaced at Sienna) mimicking me. No pain meds STILL. Patella out of joint, still vomiting.
The radiologist collects me..tells me I have to sit up- sitting up make me gag on mucous. She asks what I'm there for, and I tell her I came off of a plane with a swollen ear, and this has escalated since I got there- I have no idea why they are giving me expensive X-rays. NO blood tests. No CBC. Had my temp taken ONE time- when I checked in, on a body that has no working thermostat. No blood tests. At all. Infection could be in heart at this point- all I know is I'm getting sicker.
At 9:50, Nurse 1 comes into my room and says "You're all set to check out." NO antibiotics? No pain meds? And, prescriptions for pills I can't swallow. At that point, I told him I wanted another doctor NOW. Dr. pretty-boy walks back in, takes a look at my throat- I cough and he couldn't spin his head away fast enough. He listens to my lungs and says, does the same spin when I cough, I apologize to him (?)! "Your lungs weren't even congested."
So why give me nebulizers? Why let me choke on mucous for hours? I told him point blank- he didn't give me the antibiotics, or pain meds, and I was sitting there sicker than I was when I arrived. Again, mid sentence, he cut me off and left.. Nurse 1 suddenly is a nice guy after I say, "It's obvious you guys don't care." I knew more about his roommate and music than I did about when I was going to be helped. The doctor NEVER saw me again, NEVER told me anything. NEVER explained what to do afterward, and by the way, I'm on morphine for EDS. So he actually prescribed Lortab- which has conflicted pharmacology with Morphine and should NEVER be given in tandem. He prescribed Proventil- which is for lungs, and I have a prescription for already. He prescribed Leviquin. In pill form. I can't swallow. He listened to NOTHING I said, and got progressively less helpful.
He WILL kill someone and should NOT be in Emergency medicine. IT took ME BEGGING to get an IV. Nurse 1 stuck me four times before finally listening that a collagen disorder causes rolling veins and finally found a working one. I told him I had a picc-line before for that very reason. At least when he started to listen he realized I wasn't there to interrupt HIS evening. Meanwhile, my husband arrived at 11pm. It's a new tune. Oh, yeah, by the way, he's in a big show in town, is recognized, and people there were suddenly nice to me when he showed up. Before that, I was the disabled person with "issues", per Nurse 2.
The doctor never spoke to him. He never came back. We left, Nurse 1 was nice enough to wheel me to the car. Today, blood tests done, and my white cells were through the roof. I had to correct the antibiotics so that my heart was also taken into account, and I was tested for Mumps, which was borderline. Had the doctor done that in the FIRST place, I wouldn't have had to "Interrupt" his night. Do these guys honestly think being in the open and hidden by a curtain makes them un-hearable by people in bays? My husband and I now know that St. Rose emergency is preferential to celebrity types, and we'd be seen faster if I had driven back to LA to go to Cedar's.
All I needed was a blood test and to be given the right antibiotics- that didn't cause me to vomit for hours at a time, and to be HEARD. If this doctor is left in Emergency, you will find dead patients. He just doesn't care. At all. He can't even handle that people cough when they breathe mucous. He never understood why the Ehlers-Danlos was important and KEY. And, Nurse 1 telling me I could crush antibiotics into applesauce wasn't the answer.
We used to believe this was the only competent facility. Now we know better.
I heard other patients admitted. A senior who had gotten so drunk he wasn't able to stand up. A woman who had diverticulitis, but whose white husband was doing all the talking. Two other women had sutures, and were in and out before I was even seen. Here is my open letter to the St. Rose Hospital in Las Vegas. (Names abridged until hospital responds.)
Dear Public "relations",
Dr. F. is going to kill someone. Last night, I thought it was going to be me. I have been in an emergency room 3 times in the last 20 years. Three. I don't go because I need attention I go because I need help NOW. I have two chronic conditions- Ehlers-Danlos, a connective tissue disorder, and Hashimoto's Thyroiditis- an autoimmune disorder. ANY doctor with ANY cardiac experience NEEDS to know this because if I get infections, it attacks my heart. I tell this emergency room "pretty boy" that I have Ehlers- Danlos and his response is "So what is that? Why do I care?" I try to tell him and he's already 20 feet away, back to me. And it happened again, later in the evening.
I came in from the airport, with a nasty infection in my ears - spinning room and all. It's relevant. I had been exposed to children with illness, it's relevant. But, with an intake nurse watching my husband's tattoos, and asking more questions about that- all I got to hear about was "Sinus infection" in the Vegas Valley. I hadn't come in from the Vegas Valley, I'd come in from Los Angeles.
Still, that's an infection. I saw a doctor two HOURS after getting there. (Six months before, my husband was seen for a fistula in less than 10 minutes.) I couldn't breathe, and was given a nebulizer treatment. This caused mucous to pour from my sinuses- and I was gagging on yellow chunks- Dr. reaction was "Swish with peroxide".
I continue gagging and vomiting air for 2 hours, and I hear Nurse 1 and Nurse 2 talking about their music, food, hip replacements, and oh yeah, I wasn't given antibiotics, pain meds, or even a second glance by the doctor after the "swish". My throat at this point is starting to bleed from the vomiting. NO one cares. THEN, I walk up to the nurses station, IN FRONT OF MY BAY, and ask for the pain meds again. It's now 9:34, and the intake nurse said I'd get them within the hour I arrived.
Right. Okay. I get back to the bed, and my left patella is now slid. Ehlers- Danlos. Nurse 1 walks up and tells me to get this pregnancy test. I'm told "Hospital policy". I've been to the bathroom three times, and could have taken one ANY of those times. I get told they need x-rays? For my throat? I'm gagging on mucous, not a nodule from Hashimoto's. I tell Nurse 1 my patella is out of joint, and I can't walk. I get handed a bed pan. I am now sitting on wet sheets- never once got asked if I wanted a blanket, or even tissues to wipe up the spit vomit- I brought my own. I see Nurse 2 (hip replaced at Sienna) mimicking me. No pain meds STILL. Patella out of joint, still vomiting.
The radiologist collects me..tells me I have to sit up- sitting up make me gag on mucous. She asks what I'm there for, and I tell her I came off of a plane with a swollen ear, and this has escalated since I got there- I have no idea why they are giving me expensive X-rays. NO blood tests. No CBC. Had my temp taken ONE time- when I checked in, on a body that has no working thermostat. No blood tests. At all. Infection could be in heart at this point- all I know is I'm getting sicker.
At 9:50, Nurse 1 comes into my room and says "You're all set to check out." NO antibiotics? No pain meds? And, prescriptions for pills I can't swallow. At that point, I told him I wanted another doctor NOW. Dr. pretty-boy walks back in, takes a look at my throat- I cough and he couldn't spin his head away fast enough. He listens to my lungs and says, does the same spin when I cough, I apologize to him (?)! "Your lungs weren't even congested."
So why give me nebulizers? Why let me choke on mucous for hours? I told him point blank- he didn't give me the antibiotics, or pain meds, and I was sitting there sicker than I was when I arrived. Again, mid sentence, he cut me off and left.. Nurse 1 suddenly is a nice guy after I say, "It's obvious you guys don't care." I knew more about his roommate and music than I did about when I was going to be helped. The doctor NEVER saw me again, NEVER told me anything. NEVER explained what to do afterward, and by the way, I'm on morphine for EDS. So he actually prescribed Lortab- which has conflicted pharmacology with Morphine and should NEVER be given in tandem. He prescribed Proventil- which is for lungs, and I have a prescription for already. He prescribed Leviquin. In pill form. I can't swallow. He listened to NOTHING I said, and got progressively less helpful.
He WILL kill someone and should NOT be in Emergency medicine. IT took ME BEGGING to get an IV. Nurse 1 stuck me four times before finally listening that a collagen disorder causes rolling veins and finally found a working one. I told him I had a picc-line before for that very reason. At least when he started to listen he realized I wasn't there to interrupt HIS evening. Meanwhile, my husband arrived at 11pm. It's a new tune. Oh, yeah, by the way, he's in a big show in town, is recognized, and people there were suddenly nice to me when he showed up. Before that, I was the disabled person with "issues", per Nurse 2.
The doctor never spoke to him. He never came back. We left, Nurse 1 was nice enough to wheel me to the car. Today, blood tests done, and my white cells were through the roof. I had to correct the antibiotics so that my heart was also taken into account, and I was tested for Mumps, which was borderline. Had the doctor done that in the FIRST place, I wouldn't have had to "Interrupt" his night. Do these guys honestly think being in the open and hidden by a curtain makes them un-hearable by people in bays? My husband and I now know that St. Rose emergency is preferential to celebrity types, and we'd be seen faster if I had driven back to LA to go to Cedar's.
All I needed was a blood test and to be given the right antibiotics- that didn't cause me to vomit for hours at a time, and to be HEARD. If this doctor is left in Emergency, you will find dead patients. He just doesn't care. At all. He can't even handle that people cough when they breathe mucous. He never understood why the Ehlers-Danlos was important and KEY. And, Nurse 1 telling me I could crush antibiotics into applesauce wasn't the answer.
We used to believe this was the only competent facility. Now we know better.
Monday, April 6, 2009
Relapsing
Chronic illness has an unfortunate path- there are often relapses caused by being on incorrect dosages of medication, the wrong medications, or even at the edge of healing. You may feel as though you are taking the cliched two steps forward and three steps back. For a sweet moment there was a glimpse of what it would be like to feel "normal" and then- everything that you were fighting and sometimes even more comes back with a vengeance.
With genetic disorders and syndromes it's hard to gauge when a flare up will return. First you are battling your body's own make up. It only knows the genetics and chemicals, hormones and functions that it has- and nothing more. When a new chemical or hormone is introduced, sometimes the body will approve of the change- and get well. But, there are many times that the body decides your options aren't the correct ones. And that's when you are stuck dealing with that reaction.
Over the last few months, my body has determined that it will fight my attempts at finding "healthy" by thwarted the purpose of the medications I've taken. First it started with the sleeping medications - and I spent nights upon nights wide eyed, watching sunrises, and hoping that a nap would suffice. Next came the uprising against my pain medications, and I have been battling a variety of new options in attempt to at least get down to a "7" on that smiley faced scale. Finally, the hormones that have devoured my thyroid gland, and brought me from a size 3/4 to a size 12, are working to defeat the synthetic replacments that are startign to show signs of working.
The last ten days have been a greater struggle than the last ten years. The wheelchair is starting to get closer to the door, and I'm struggling with the idea that I'm losing my ability to maintain much physicality. The left hand swells up, then the bruises appear, and next thing that I know- I'm back on the couch hoping the clock will just shush for five minutes as I attempt to not migraine. I find that standing is painful, and when I drive, my back ends up with welts and large bruises because the bones shift and bang into each other. Sitting upright is just impossible.
Of course, I can't imagine telling my husband this over and over. He's the emperor of patience and begs me to tell him what's wrong, as a good man should. But I hate hearing it as much as I hate saying it. I hate admitting that I'm failing at getting better. I hate admitting that no matter how many new medications, new treatments, new options, or new doctors I try- the genetics have a one-track mind.
There are days when I get why people commit suicide over illness. I've lost friends and family members to that disease- and can't see it as an option for myself. But there are days when I wonder why I wake up if I know there isn't anything but pain. Tonight, there was an episode of House, MD, where a key character commits suicide- without explanation. Suicide doesn't offer any explanations, and it never will- the choice of death over pain is an option for some people. I'm not one of them.
Is there ever an escape from chronic pain, chronic illness, and chronic doctor visits? We can create inner escapes which help for at least moments. For me, spending time with my pets seems to erase moments of pain. A friend of mine has a daughter with whom she can finger paint and read stories- and then her illness is gone for those moments. It's those moments- the ones that make us feel human- that help the relapses, help the lingering illnesses. We aren't cured, but we're in a moment that isn't marred by pain and being sick.
Today's questions- What can we do to get through relapses? What have you found to help when you're in between doctors' visits and can't quite get through your illness? Have you bounced back from an illness long term, only to be surprised by its return?
With genetic disorders and syndromes it's hard to gauge when a flare up will return. First you are battling your body's own make up. It only knows the genetics and chemicals, hormones and functions that it has- and nothing more. When a new chemical or hormone is introduced, sometimes the body will approve of the change- and get well. But, there are many times that the body decides your options aren't the correct ones. And that's when you are stuck dealing with that reaction.
Over the last few months, my body has determined that it will fight my attempts at finding "healthy" by thwarted the purpose of the medications I've taken. First it started with the sleeping medications - and I spent nights upon nights wide eyed, watching sunrises, and hoping that a nap would suffice. Next came the uprising against my pain medications, and I have been battling a variety of new options in attempt to at least get down to a "7" on that smiley faced scale. Finally, the hormones that have devoured my thyroid gland, and brought me from a size 3/4 to a size 12, are working to defeat the synthetic replacments that are startign to show signs of working.
The last ten days have been a greater struggle than the last ten years. The wheelchair is starting to get closer to the door, and I'm struggling with the idea that I'm losing my ability to maintain much physicality. The left hand swells up, then the bruises appear, and next thing that I know- I'm back on the couch hoping the clock will just shush for five minutes as I attempt to not migraine. I find that standing is painful, and when I drive, my back ends up with welts and large bruises because the bones shift and bang into each other. Sitting upright is just impossible.
Of course, I can't imagine telling my husband this over and over. He's the emperor of patience and begs me to tell him what's wrong, as a good man should. But I hate hearing it as much as I hate saying it. I hate admitting that I'm failing at getting better. I hate admitting that no matter how many new medications, new treatments, new options, or new doctors I try- the genetics have a one-track mind.
There are days when I get why people commit suicide over illness. I've lost friends and family members to that disease- and can't see it as an option for myself. But there are days when I wonder why I wake up if I know there isn't anything but pain. Tonight, there was an episode of House, MD, where a key character commits suicide- without explanation. Suicide doesn't offer any explanations, and it never will- the choice of death over pain is an option for some people. I'm not one of them.
Is there ever an escape from chronic pain, chronic illness, and chronic doctor visits? We can create inner escapes which help for at least moments. For me, spending time with my pets seems to erase moments of pain. A friend of mine has a daughter with whom she can finger paint and read stories- and then her illness is gone for those moments. It's those moments- the ones that make us feel human- that help the relapses, help the lingering illnesses. We aren't cured, but we're in a moment that isn't marred by pain and being sick.
Today's questions- What can we do to get through relapses? What have you found to help when you're in between doctors' visits and can't quite get through your illness? Have you bounced back from an illness long term, only to be surprised by its return?
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