[quick editorial note: I turned comment moderation on for old posts but forgot to set Blogger to email me when there was a comment needing moderation. Oops. Sorry if you're the commenter who sat waiting so long.]
In the spirit of Thanksgiving last week and today being World AIDS Day I wanted to thank the doctors, nurses, and support staff (and researchers?) at UAB's Family Clinic (or whatever it's called now). When Nettie was born (and the months leading up to then), my parents, brother, the rest of my family and I (and possibly her bio-mom, but how would anyone know?) were worried and unsure about her chances of being born healthy and getting to grow up to be the wonderful pre-teen she is today, much less to be the beautiful young woman she'll be in a few more years.*
Scientific American had a special issue devoted to HIV/AIDS right about the time we found out my (now former) SIL was HIV positive. That helped a lot. We had some current information all in one place, and it was understandable. It also helped with the OB, because while I'm sure he was a wonderful doc, he didn't start out knowing much about what could be done to help the baby's chances of being HIV negative; my brother could go in with good information to get the OB looking into it.
After the birth though we were a bit in the dark again; SA had articles on pregnancy and birth and HIV infection in babies/children but, as I recall, nothing on when you know an infant isn't infected. This is when the Family clinic came in and were just wonderful. (Not all of our experiences at Children's were wonderful, or even good, but that wasn't FC's fault.) The doctors and nurses were not only good at doctoring but had good bedside manner and were willing to answer any questions we had; the social worker, too. (She even gave Mom and me meal vouchers but we didn't get to use them -that was the Day From Hell.)
The Family Clinic is (or was 10 years ago) a group from UAB and had "clinic" at Children's Hospital in Birmingham one day a week (Montgomery and Huntsville 2 other days a week, iirc). Their goal was to treat every HIV positive child (and HIV exposed infants) and, when needed, the parents of those children in the state. (A lofty goal and one I'm sure they fell short on - a lot of people would have trouble getting to the hospitals). They also did research on HIV in infants and children. They had drug protocols, testing schedules, and stats. Just learning the statistics on when babies test positive and hearing that Nettie, at 8 days old, didn't have any of the common early signs of infection helped put us at ease. Or at least helped us not worry TOO much. And a year and a half later, knowing that she didn't have to be tested any more, was very nice confirmation that our beautiful healthy little girl was going to stay that way.
Now if we could somehow skip the middle school years, everything would be perfect.
*What? How? When? She was just a little baby, like, yesterday!
Showing posts with label medicine. Show all posts
Showing posts with label medicine. Show all posts
01 December 2009
14 October 2008
Thank God, not my
...gynecological horrors. (Those with weak constitutions and men may wish to read about the daily exploits of an adolescent polar bear.)
My mother has a prolapsed uterus. It's been getting worse since my youngest brother was born (4 years before me). For a long time it just sat a little low and pushed on her bladder, making for frequent stops on family trips. In the last couple of years it has fallen even further, occasionally making it difficult for her to urinate. In the last year, it has started to try and fall out. (I warned you it would be unpleasant.) Having one's uterus attempt to exit one's vagina on it's own is bad enough but the non-surgical solution to this is even worse (IMveryHO, I am not a doctor...).
The obvious solution, especially at my mother's age is to have a hysterectomy, but Mom tries to avoid surgery so she decided to try the non-surgical solution. The doctor, initially, made it sound not too bad. "We insert a pessary and it holds everything in place, sometimes they fall out." The pessary is a doughnut shaped device that is folded up to fit up the vagina and through the cervix. It then unfolds and is suppose to keep whats inside from fallin out. Assuming everything works, it is removed a month later to make sure nothing it isn't causeing any problems in there. Assuming that ckecks out, the doctor inserts another one, which has to be removed every TWO MONTHS forever or until one gives up and has a hyterectomy. The really fun thing is that the doctor has no way of knowing exactly where the pessary is when he goes to remove it, so it's a bit of a fishing expedition to find it and it's difficult fold it up again. All in all the best case secenario sounds pretty unpleasant. I can't think why anyone would choose this treatment except to allow for future pregnacies, to which I suggest adoption. (It is possible that the whole thing is not as unpleasant for everyone as it was for Mom, I certainly hope it isn't.)
My mother was not a best case; it fell or was pushed out. I can not imagine how unpleasant that must have been. The nurse said there was the possibilty of trying a larger size, Mom was not interested. Yesterday, when she saw the doctor, he didn't suggest it anyway. Unfortunately, she can't have a 'normal' hysterectomy (vaginal or laparotomy). She's going to have to have major abdominal surgery (I know, kind of redundant) to remove the offending organ and have some reconstructive work done. This means a much longer recovery time both from the physical assult and from the full anathesia (which is liable to screw her up for months).
Yet another reason I'm glad not old.
My mother has a prolapsed uterus. It's been getting worse since my youngest brother was born (4 years before me). For a long time it just sat a little low and pushed on her bladder, making for frequent stops on family trips. In the last couple of years it has fallen even further, occasionally making it difficult for her to urinate. In the last year, it has started to try and fall out. (I warned you it would be unpleasant.) Having one's uterus attempt to exit one's vagina on it's own is bad enough but the non-surgical solution to this is even worse (IMveryHO, I am not a doctor...).
The obvious solution, especially at my mother's age is to have a hysterectomy, but Mom tries to avoid surgery so she decided to try the non-surgical solution. The doctor, initially, made it sound not too bad. "We insert a pessary and it holds everything in place, sometimes they fall out." The pessary is a doughnut shaped device that is folded up to fit up the vagina and through the cervix. It then unfolds and is suppose to keep whats inside from fallin out. Assuming everything works, it is removed a month later to make sure nothing it isn't causeing any problems in there. Assuming that ckecks out, the doctor inserts another one, which has to be removed every TWO MONTHS forever or until one gives up and has a hyterectomy. The really fun thing is that the doctor has no way of knowing exactly where the pessary is when he goes to remove it, so it's a bit of a fishing expedition to find it and it's difficult fold it up again. All in all the best case secenario sounds pretty unpleasant. I can't think why anyone would choose this treatment except to allow for future pregnacies, to which I suggest adoption. (It is possible that the whole thing is not as unpleasant for everyone as it was for Mom, I certainly hope it isn't.)
My mother was not a best case; it fell or was pushed out. I can not imagine how unpleasant that must have been. The nurse said there was the possibilty of trying a larger size, Mom was not interested. Yesterday, when she saw the doctor, he didn't suggest it anyway. Unfortunately, she can't have a 'normal' hysterectomy (vaginal or laparotomy). She's going to have to have major abdominal surgery (I know, kind of redundant) to remove the offending organ and have some reconstructive work done. This means a much longer recovery time both from the physical assult and from the full anathesia (which is liable to screw her up for months).
Yet another reason I'm glad not old.
13 June 2007
To treat or not to treat...
...and is it even a disease?
I ran across a series of essays in PLoS Medicine from last year on disease mongering and they made me want to have my say, too. Even if I'm not a doctor*.A disclaimer: I am not a health care professional, psychologist, pharmacist, neurologist, nor do I hold any degree or have any particular education making me an expert on medicine and health issues. I take three medicines daily and one as needed. I have asthma (1 inhaler twice daily, 1 inhaler as needed, and a nasal steroid spray once daily) and social anxiety disorder (Paxil's generic once daily). All information in this post is from my non-professional and, at most, semi-technical reading and personal experience.
First the idea of disease mongering - I agree with the essays that this is a problem. Convincing people (or putting the idea in their head to nag at them) that they may have a disease, when in actuality most individuals fall into the normal range and very few of the targeted audience has a problem requiring treatment is reprehensible. One article points to two different definitions of "health." The first, and probably longest held view, is that health is the absence of disease. I think when asked what health is, most people would give an answer that could be summed up that way - not sick. The second definition is potentially problematic, I think. Health is the "state of complete physical, mental and social well-being" (WHO definition). If we accept that complete well-being is necessary for health, then we must define well-being! The drug companies seem to be trying to convince us that if we aren't young, virile, out-going, and happy all the time than we need a medicine to make us that way.
Second question/point, is the existence of a disease suspect if it is suddenly and heavily marketed? I don't think so. I have seen the rise in ADD/ADHD diagnoses and the lower of age of diagnosis and treatment since I was a pre-teen. I believe that ADD/ADHD can be very difficult to live with, both for the patient and his family. I also believe that it is over diagnosed and over medicated. I have heard too many anecdotal stories about zombie-like kids over medicated and of kids who are, IMHO, to young for there to be a meaningful average attention span. How do you measure a two-year old's attention span and hyperactivity? I think everyone involved with a child who may be ADD/ADHD think long and hard about whether medical intervention is necessary, what treatment is best, and constantly reevaluate medication levels to prevent over medication. Nobody wants his child to be a zombie, just for the child to be able to concentrate on what she is doing.
On to my two diagnoses: Asthma is fairly straight forward to diagnose - either your airways constrict or they don't. Triggers for that constriction vary widely and the severity varies widely. (I suppose it is possible that everyone has something that will trigger an asthma attack and most have simply never come in contact with it, but I doubt it.) Whether one's asthma requires daily medication or only medication as needed is not so cut and dried. The decision to take daily medicine depends on the effectiveness of the fast-acting inhaler, the frequency of attacks, the severity of attacks, the effectiveness of other treatments (weight can play a role, removal of triggers...), and the effect the attacks have on normal daily activities. While there is debate about the cause(s) of the rise in asthma cases, I haven't heard of any suggestion that the rise in diagnoses being tied to increased public awareness of the disease.
Social anxiety disorder is a little bit harder to pin down. I think some people even doubt it is a real disease ("you're just shy"). Like all mental illness, different people have different severity of symptoms. Some people are just shy. Some people isolate themselves because of their anxiety to the point that they have difficulty functioning in society. Just shy - don't need meds. Can't function - meds might help. At what point medication is needed, how much, and for how long are all questions one has to discuss with one's doctor and therapist. I saw an article about social phobia and realized I wasn't the only one who couldn't go to the grocery store without panicking. I went to see a therapist. She recommended a psychiatrist. He proscribed Paxil. A couple of weeks later I was feeling better. Not a cure all, but I wasn't near panic at the grocery store. (I may go into pre- and post-meds in another post sometime but not today.) Again the degree and type of treatment is not a set in stone - it must be individualized. One of those essays pointed to a New York Times article where young adults are as likely to make decisions about medicine and health based on their own research as on a doctor's advice - I find that scary. We are all different and there are few simple treatment options.
While I'm writing a long-ass post, I'll go ahead and get this other medical rant off my chest. I recently found the web-page/blog of pharmacology professor, David Colquhoun, his "attempt to improve public understanding of science." From what I read it is mostly an attempt to prevent the use of alternative, natural, and/or traditional medicine. I am a fan of modern pharmacology. I am a fan of science and double-blind drug trials. I also think that at least some alternative treatments are effective. Dr. Colquhoun seems to say trials are lacking and the research that have been done is biased but doesn't support public funding of studies. I think we need to do the research! Not on all alternative medicines deserve close inspection(How could you ever know if laying on of hands worked?) but some do. (Ginger for motion sickness - can a thousand years of oriental sailors be completely wrong?) While I appreciate the professor's shining a spot light on treatments that have in studies been shown to NOT WORK, I hope he will keep an open mind about the possible effectiveness of some natural/traditional medicines. (Aspirin was discovered from willow bark tea.) It may not matter where the acupuncture needles go but if the patient feels better who cares, it worked. (What if it is a primarily stress-caused illness, like my current indigestion?) As long as the patient isn't lied to about the effectiveness and at best leave them at the same level of dis-ease, why not give them the option? To sum up my feelings on this - don't get defensive, modern pharmacology grew out of traditional medicines.
I'll shut up now. Don't worry, I'm not going to get tiny needles stuck into me. I'm really not fond of needles being stuck in me. Although all this talk of needles reminds me I need to give blood.
I ran across a series of essays in PLoS Medicine from last year on disease mongering and they made me want to have my say, too. Even if I'm not a doctor*.A disclaimer: I am not a health care professional, psychologist, pharmacist, neurologist, nor do I hold any degree or have any particular education making me an expert on medicine and health issues. I take three medicines daily and one as needed. I have asthma (1 inhaler twice daily, 1 inhaler as needed, and a nasal steroid spray once daily) and social anxiety disorder (Paxil's generic once daily). All information in this post is from my non-professional and, at most, semi-technical reading and personal experience.
First the idea of disease mongering - I agree with the essays that this is a problem. Convincing people (or putting the idea in their head to nag at them) that they may have a disease, when in actuality most individuals fall into the normal range and very few of the targeted audience has a problem requiring treatment is reprehensible. One article points to two different definitions of "health." The first, and probably longest held view, is that health is the absence of disease. I think when asked what health is, most people would give an answer that could be summed up that way - not sick. The second definition is potentially problematic, I think. Health is the "state of complete physical, mental and social well-being" (WHO definition). If we accept that complete well-being is necessary for health, then we must define well-being! The drug companies seem to be trying to convince us that if we aren't young, virile, out-going, and happy all the time than we need a medicine to make us that way.
Second question/point, is the existence of a disease suspect if it is suddenly and heavily marketed? I don't think so. I have seen the rise in ADD/ADHD diagnoses and the lower of age of diagnosis and treatment since I was a pre-teen. I believe that ADD/ADHD can be very difficult to live with, both for the patient and his family. I also believe that it is over diagnosed and over medicated. I have heard too many anecdotal stories about zombie-like kids over medicated and of kids who are, IMHO, to young for there to be a meaningful average attention span. How do you measure a two-year old's attention span and hyperactivity? I think everyone involved with a child who may be ADD/ADHD think long and hard about whether medical intervention is necessary, what treatment is best, and constantly reevaluate medication levels to prevent over medication. Nobody wants his child to be a zombie, just for the child to be able to concentrate on what she is doing.
On to my two diagnoses: Asthma is fairly straight forward to diagnose - either your airways constrict or they don't. Triggers for that constriction vary widely and the severity varies widely. (I suppose it is possible that everyone has something that will trigger an asthma attack and most have simply never come in contact with it, but I doubt it.) Whether one's asthma requires daily medication or only medication as needed is not so cut and dried. The decision to take daily medicine depends on the effectiveness of the fast-acting inhaler, the frequency of attacks, the severity of attacks, the effectiveness of other treatments (weight can play a role, removal of triggers...), and the effect the attacks have on normal daily activities. While there is debate about the cause(s) of the rise in asthma cases, I haven't heard of any suggestion that the rise in diagnoses being tied to increased public awareness of the disease.
Social anxiety disorder is a little bit harder to pin down. I think some people even doubt it is a real disease ("you're just shy"). Like all mental illness, different people have different severity of symptoms. Some people are just shy. Some people isolate themselves because of their anxiety to the point that they have difficulty functioning in society. Just shy - don't need meds. Can't function - meds might help. At what point medication is needed, how much, and for how long are all questions one has to discuss with one's doctor and therapist. I saw an article about social phobia and realized I wasn't the only one who couldn't go to the grocery store without panicking. I went to see a therapist. She recommended a psychiatrist. He proscribed Paxil. A couple of weeks later I was feeling better. Not a cure all, but I wasn't near panic at the grocery store. (I may go into pre- and post-meds in another post sometime but not today.) Again the degree and type of treatment is not a set in stone - it must be individualized. One of those essays pointed to a New York Times article where young adults are as likely to make decisions about medicine and health based on their own research as on a doctor's advice - I find that scary. We are all different and there are few simple treatment options.
While I'm writing a long-ass post, I'll go ahead and get this other medical rant off my chest. I recently found the web-page/blog of pharmacology professor, David Colquhoun, his "attempt to improve public understanding of science." From what I read it is mostly an attempt to prevent the use of alternative, natural, and/or traditional medicine. I am a fan of modern pharmacology. I am a fan of science and double-blind drug trials. I also think that at least some alternative treatments are effective. Dr. Colquhoun seems to say trials are lacking and the research that have been done is biased but doesn't support public funding of studies. I think we need to do the research! Not on all alternative medicines deserve close inspection(How could you ever know if laying on of hands worked?) but some do. (Ginger for motion sickness - can a thousand years of oriental sailors be completely wrong?) While I appreciate the professor's shining a spot light on treatments that have in studies been shown to NOT WORK, I hope he will keep an open mind about the possible effectiveness of some natural/traditional medicines. (Aspirin was discovered from willow bark tea.) It may not matter where the acupuncture needles go but if the patient feels better who cares, it worked. (What if it is a primarily stress-caused illness, like my current indigestion?) As long as the patient isn't lied to about the effectiveness and at best leave them at the same level of dis-ease, why not give them the option? To sum up my feelings on this - don't get defensive, modern pharmacology grew out of traditional medicines.
I'll shut up now. Don't worry, I'm not going to get tiny needles stuck into me. I'm really not fond of needles being stuck in me. Although all this talk of needles reminds me I need to give blood.
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