Some weeks ago my friend Elsie, who also has HPS, was in search of a new doctor. (Regular readers might remember the story.) She picked one from her insurance plan, made an appointment and dutifully arrived at her appointment. Trying her best to educate the new doctor about Hermansky-Pudlak Syndrome, she began to tell him about her diagnosis etc. He dismissed her with a flippant “Don’t give me your diagnosis, give me your symptoms” comment and then proceeded to tell her that she probably didn’t have HPS because it’s so rare. Eventually she did convince him and he included the HPS brochure in her chart – but the experience was frustrating and left Elsie feeling like this wasn’t the doc. for her.
So, Elsie’s been searching for a new doctor, yet again, but as happens with all of us, life gets in the way. There are things to do, kids to care for, and somehow the project ends up on the back burner. That is until this last week.
Elsie developed a terrible ear ache. Her ear was painful and swollen and clearly needed medical attention. So, as much as she hated to return, it was back to Dr. Quack in hopes of getting proper attention for a simple ear ache. She reminded him of her HPS, and after a cursory exam Dr. Quack prescribed some antibiotics and a non-steroidal anti-inflammatory drug for her pain. You’ve got to be careful about these types of drugs if you’ve got Hermansky-Pudlak Syndrome because some can affect platelet function.
Elsie obtained the drugs (after much hassle) and discovered the pain killer had an ingredient that is on the bleeding disorder no no list. Disgusted that she’d just spent good money for a drug her doctor should have known she couldn’t take (if he listened to her), Elsie opted for Tylenol until she could get the advice of someone who knew about HPS.
The ducky doc. aside, Elsie’s most recent little HPS adventure illustrates a point I’m still being educated about myself.
Those of us with HPS must be very careful about the drugs, even over-the-counter drugs, we take for the normal maladies of life. Many could end up causing us more problems. At the same time, people with HPS should also understand that there may be times when you’ve got to take a drug that can cause bleeding problems because the other issue you’re trying to treat could be more serious.
An example Donna recently shared with me was little kids with high fevers that won’t break. Many pediatricians will recommend switching back and forth between Asprin and Tylenol to try to bring the fever down. Yes, for a kid with HPS, it might aggravate bleeding issues, but if the kid is sick and lying around on the couch, rather than being outside playing tackle football, it’s probably safe (but if your kid has a fever, check with your own doc.)
The point is, however, HPS’ers need to consult with their doctors when these situations arise. How do you know when it’s okay to break the rules, and when breaking the rules could put you at greater risk should the problem become worse? I don’t claim to know. Every situation, every illness and every person is different.
The best we can do is constantly remind our doctors about our bleeding issues. I do this in a gentle way so as not to seem like I don’t think my doc. knows what he’s doing. It isn’t that they don’t know. It’s often that they’re thinking of the immediate problem to be solved and may temporarily forget. I just ask, “Does this drug affect platelet function or bleeding?” I ask the same thing at the pharmacy, and then I look the drug up on the internet to read about it myself just to be sure. I know, probably overkill, but you’d be surprised how many docs. just don’t know.
So, Elsie’s been searching for a new doctor, yet again, but as happens with all of us, life gets in the way. There are things to do, kids to care for, and somehow the project ends up on the back burner. That is until this last week.
Elsie developed a terrible ear ache. Her ear was painful and swollen and clearly needed medical attention. So, as much as she hated to return, it was back to Dr. Quack in hopes of getting proper attention for a simple ear ache. She reminded him of her HPS, and after a cursory exam Dr. Quack prescribed some antibiotics and a non-steroidal anti-inflammatory drug for her pain. You’ve got to be careful about these types of drugs if you’ve got Hermansky-Pudlak Syndrome because some can affect platelet function.
Elsie obtained the drugs (after much hassle) and discovered the pain killer had an ingredient that is on the bleeding disorder no no list. Disgusted that she’d just spent good money for a drug her doctor should have known she couldn’t take (if he listened to her), Elsie opted for Tylenol until she could get the advice of someone who knew about HPS.
The ducky doc. aside, Elsie’s most recent little HPS adventure illustrates a point I’m still being educated about myself.
Those of us with HPS must be very careful about the drugs, even over-the-counter drugs, we take for the normal maladies of life. Many could end up causing us more problems. At the same time, people with HPS should also understand that there may be times when you’ve got to take a drug that can cause bleeding problems because the other issue you’re trying to treat could be more serious.
An example Donna recently shared with me was little kids with high fevers that won’t break. Many pediatricians will recommend switching back and forth between Asprin and Tylenol to try to bring the fever down. Yes, for a kid with HPS, it might aggravate bleeding issues, but if the kid is sick and lying around on the couch, rather than being outside playing tackle football, it’s probably safe (but if your kid has a fever, check with your own doc.)
The point is, however, HPS’ers need to consult with their doctors when these situations arise. How do you know when it’s okay to break the rules, and when breaking the rules could put you at greater risk should the problem become worse? I don’t claim to know. Every situation, every illness and every person is different.
The best we can do is constantly remind our doctors about our bleeding issues. I do this in a gentle way so as not to seem like I don’t think my doc. knows what he’s doing. It isn’t that they don’t know. It’s often that they’re thinking of the immediate problem to be solved and may temporarily forget. I just ask, “Does this drug affect platelet function or bleeding?” I ask the same thing at the pharmacy, and then I look the drug up on the internet to read about it myself just to be sure. I know, probably overkill, but you’d be surprised how many docs. just don’t know.
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