It's pretty much guaranteed that we CFers have to go into the hospital once in a while to get a "tune up": a few weeks of IV antibiotics, extra chest physical therapy and inhaled meds, and rest. I've had my fair share of tune ups since I was a kid, and I currently feel best when I get one every 3 to 4 months. I wanted to share a few pieces of advice to other adults with CF out there who want to maximize the effectiveness of their stays, and also reduce the risk of developing possible side effects. Being a kid in the hospital is a little bit different, but some of the same tips may be helpful for the smaller humans, too.
1) Assert Your Rights as a Patient
I thought I should make this one first because it may be the most important for a hospital stay, and for healthcare in general. As an adult, you should know that you have a right to refuse any suggestion, treatment, or intervention offered by your providers. Of course, a lot of their suggestions are going to be really great ideas backed up by good reasoning, science, and clinical experience. But some of those suggestions won't be, and sometimes they might be unnecessary, harmful, or just plain annoying. For instance, I have caught a number of mistakes by doctors (usually young attendings that don't know much about CF) ordering completely useless or redundant tests, racking up hospital bills, and wasting my time. Nowadays, I almost always catch these things before they happen, but I remember when I was younger I didn't know how or feel comfortable enough to say no. I have developed somewhat of a reputation now with my docs and the pharmacists too: they know to ask me before making any additions or changes, because I almost always have a well-informed opinion about them. You are the only one that knows the details of your past medical history and the things that have worked (and not worked) in the past. Sometimes docs remember things like that, but so often documentation is not very thorough or they have too many patients to remember details, so it's up to you to record and keep track of your history and what was helpful in the past. I can't tell you how useful it has been to keep personal records of drug levels, test results, and dosages of IV meds - the pharmacists really appreciate it when you can make good arguments backed up by numbers, helping to guide them to find the right dosages for certain meds (vancomycin in particular).
Also assert your right to know everything about what they do to you, what they give you, and how things work. You have a right to have procedures, tests, drugs, and treatments explained to you in a way that you understand. If you have questions, don't be afraid to ask your team! Some docs will get upset by patients asking too many questions, but that is an unacceptable piece of medical culture that needs to change. But other docs actually love explaining things to patients, and really like it when patients want to know more. Healthcare professionals should be educators first and foremost, because patients should know how to take care of themselves as best they can so they can avoid coming into the hospital! Remember that you are the primary decision maker for your healthcare choices - don't let anyone convince you otherwise.
2) Get Enough Sleep
In my hospital there is a habit of the phlebotomists doing rounds to the rooms on my floor at 5 am to draw blood. Obviously, I am not a fan of getting woken up at 5 am to get stuck by a nurse, so I make sure they know (either with signage on my door or letting my nurse know) that I am not to be disturbed before 8 am for any reason. Getting enough sleep is absolutely critical to maintaining a healthy immune system for fighting infection. Our immune system does most of its work when we are asleep. Sleep quality also matters: 8+ hours of uninterrupted sleep is better than several 4-hour chunks throughout the night. If you are healthy enough not to need your vitals checked every few hours, tell them that the night time vitals should be skipped, or ask the docs to order them for only once a day. Other than bad hospital food, one of my primary pet peeves with mainstream hospital protocol is interrupting patients' sleep. How are we supposed to heal if we can't sleep?! If you can, let your nurse know that you need certain specific hours of the night to be completely uninterrupted - no vitals, no "peek-ins", no tests, no docs, etc. Sometimes there are things that can't wait (i.e. certain tests for drug levels at a specific time of day) but there are ways to work around that. Also, some docs do rounds very early, like 6 am, and in those situations I have found that they usually listen if you ask them not to come in until later, or not at all.
Also, try your best to reduce the noise level inside the room. I know we sometimes don't have control about the noise level outside the room, but when it comes to machine noises, those can be very distracting when you're used to a silent bedroom at home. I unplug or turn off as many machines as I can when I am sleeping, and I also cover up many machine lights, especially the little blinking ones (that drive me crazy!), usually with some alcohol pads and medical tape. Darkness is key to good sleep quality. If the little beeps and whistles can't be shut off, I use a fan to provide some white noise. I always bring earplugs and an eye mask with me just in case.
3) Eat Good Food
This can be a pretty hard thing to do, depending on your hospital. I remember trying to find anything edible at the hospital at Johns Hopkins when I visited there a few years ago, and all I could find on the menu was livestock-quality white rice and soggy over-cooked broccoli (their food company was the same that supplies to many prisons). On the other hand, my hospital here in Vermont has such a good menu that I don't have to supplement with outside food at all anymore, and it's pretty easy now to eat Paleo while I'm here! Medical establishments all over the nation are getting more hip to the growing body of evidence suggesting that proper nutrition is a primary mechanism for preventing and treating disease, and there is growing access to government funding for improving nutrition in hospitals. However, not all hospitals are aware of this yet, and so it may be necessary for some of you to supplement with outside food in order to eat food that will help your body heal and fight infection effectively.
Specifically, make sure you get plenty of fresh and cooked vegetables while you're there, especially leafy greens. Most hospitals have salad bars at least, so try to eat at least a little salad every day. Fresh fruit is also great, especially berries. There's also a lot that you'll have to avoid in the hospital: TONS of sugar everywhere (sodas, ice cream, pastries, sugary-drinks, junk food, etc.), things fried/baked with refined vegetable oils, and foods with hidden dairy and gluten. I know it's hard to resist the sugar-beast in the hospital because it's often free and you're encouraged to gorge yourself on anything while you're there. But remember that sugar feeds infection, plus we are much more insulin resistant while we're sick and laying in bed too much, so diabetes or glucose intolerance can worsen in the hospital. So make sure you've got good alternatives, even if that means you have to ask friends/family to bring you food from outside. My hospital offers CFers the option of having mini-fridges in our rooms, which can be super helpful in this situation.
4) Take Probiotics and Eat Fermented Food
Antibiotics can wreak havoc on our microbiome, which can harm our GI tract, cause indigestion, reduce absorption of food, harm our immune system, and make us more vulnerable to catching gut infections like Clostridium difficile. Therefore, it is critical that we eat plenty of beneficial bacteria, either in the form of fermented foods like sauerkraut, kimchi, kombucha, or yogurt (if you tolerate dairy), and/or in the form of a probiotic pill. I encourage people to take both, especially since species diversity is key here. Fermented foods generally have a lot of species diversity, often more diversity than pills, and this is important for maintaining high biodiversity of the gut ecosystem, as I've explained before on my website. Some hospitals now recognize the ENORMOUS volume of research on the benefits of probiotic therapy for boosting immunity and preventing gut infections (like C. Diff), so they may provide a probiotic in the hospital. But they may prescribe just one strain of Lactobacillus, such as Lactobacillus rhamnosus GG (a.k.a. Culturelle), and while most probiotics are better than none, one strain is not enough. You can't clearcut an old-growth forest, plant it with pine trees, and expect everything to function normally! Species diversity is key, so I suggest using that probiotic (if they provide it) as well as a high-quality multi-species probiotic. Not all probiotics are created equal, so I have written a guide here to help you find a high-quality probiotic. Probiotics should be taken at the end of a large meal or before bed, and at least an hour away from an antibiotic.
Also, thrush (yeast infections of the mouth) and gential yeast infections are common side effects of using IV antibiotics, and there are a few techniques I've used in the past to treat and to prevent such infections from occurring. In terms of prevention, taking probiotics and eating fermented foods is HUGELY helpful. But also, even though I don't eat dairy, I use plain yogurt (real yogurt with live cultures) as a mouth rinse every night before I go to bed (I spit it out, but if you eat yogurt you could swallow it). You can now also find unsweetened coconut yogurt (made with coconut milk instead of cow milk) in some natural food stores, which will function in the same way. My theory behind mouth rinsing with yogurt is that it populates the mouth flora with Lactobacillus so that yeasts like Candida albacans can't take gain a foothold on the oral terrain. Lactobacillus compete with yeasts for space and also can directly inhibit them. By taking probiotics, eating fermented foods, avoiding sugar, and rinsing the mouth with yogurt, I have prevented myself from getting thrush (which used to happen every time) for the last two hospitalizations. Hooray!
In terms of treatment of oral thrush if it's already established, I have personally used a strong calendula flower tea (steep about 4 tbsp of the flowers in a quart of hot water for at least 15 minutes covered, and keep in the fridge until use) with a little bit of goldenseal powder as an oral rinse. I use about 1-2 oz of calendula tea with about 1/8 tsp of goldenseal powder mixed in it, swish and gargle it, then spit it out. Do this 3-4 times a day until the infection is gone. Both calendula and goldenseal are strongly antifungal. During this time, also rinse the mouth with yogurt after gargling the tea, at least once a day. I have compared this method to using nystatin oral rinses that the doc has prescribed to me for thrush, and the efficacy is pretty much identical - both the nystatin and the calendula tea take about 4 days to get rid of a thrush infection. Obviously, I prefer the natural method myself. The tea is gentle enough that it doesn't hurt at all, it's actually quite soothing if the tea is cold, which is a perk because if you've ever had thrush you know it hurts like heck!
A genital yeast infection can be douched or rinsed with calendula tea. In addition, yogurt can be used as a douche before bed, plus cold yogurt can feel pretty nice on red, itchy skin. I know it sounds gross but it works! A probiotic pill can also be inserted into the vagina before bed, and the capsule usually dissolves overnight. The vaginal flora should be dominated by Lactobacillus species, so this method can be very effective if done every night for at least a week or as long as you're on (or recovering from) antibiotics. Another method for females is to score a clove of garlic, thread floss through it, and insert the clove into the vagina overnight with the end of the floss hanging out (so you can pull it out easily in the morning). Garlic is also strongly antifungal and this method can be very effective for getting rid of a yeast infection in about 5 days. Follow up with probiotics.
5) Avoid Triclosan
As many of you may have heard, triclosan is a common ingredient in antibacterial soaps used in medical facilities and has been shown to be carcinogenic and harmful to the liver in mouse studies [1]. Furthermore, it may increase risk of developing drug-resistant bacteria. Regular soaps that are not "antibacterial" are just as effective at killing germs but have much lower risk of causing antibiotic resistance [2]. Therefore, when in the hospital (and any other time) avoid using soaps or hand sanitizers with triclosan in them, and instead use regular soap or alcohol-based hand sanitizers.
6) Take Milk Thistle
Many herbs can be helpful in reducing side effects of drugs in the hospital and helping to improve the effectiveness of the drugs that you do take. However, some herbs can have interactions with drugs that may not be so good, so it's important to do your research and/or check with an herbalist when taking herbs in the hospital. That said, there is one herb that I think is very beneficial for most people who are exposed to heavy-duty drugs while in the hospital, that has no known herb-drug interactions, and is very safe: milk thistle. There is an immense amount of research done on milk thistle for its ability to help the liver process toxins, reduce liver inflammation/damage and elevated liver enzymes, and protect the liver from harmful substances. Other than those who have allergies to the Aster family of plants, milk thistle has virtually no side effects and is very safe even at high doses. I take milk thistle all the time because I am frequently exposed to strong drugs that may be harmful to the liver, and I always make sure that I take higher doses of milk thistle when I'm in the hospital. For the last two surgeries that I had, taking milk thistle before and after surgery helped me recover from anesthesia much more quickly than I have in the past (usually takes me way too long in the recovery room). Milk thistle can be especially helpful if you tend towards having elevated liver enzymes, if you have drug sensitivities or allergies, or if you have CF-related liver disease. Look for capsules of a milk thistle extract that contains 80% silymarin, ideally organic or equivalent. Take with food. I take 500-1000 mg daily, depending on my level of exposure to substances that may be harmful to the liver.
7) Take the Stairs
Exercise is so important in terms of airway clearance, regulating blood sugar, and building strength and resilience, and one easy way to make sure you stay active in the hospital is to take the stairs whenever possible. Sitting around in the hospital bed all day just makes me more tired. The more active I am, the quicker my recovery time. But I always try to listen to my body and let myself rest if I feel particularly fatigued, especially in the beginning of my admission when I'm feeling the crappiest. Also, I always try to get outside when I'm inpatient, at least once a day. Sunlight and fresh air are so important for health!
I hope those were some helpful tips! If you have any suggestions to add to this list, please leave comments below!
**********
Disclaimer: The content of this blog is for educational purposes only. I am not a licensed medical professional and this should not be considered medical advice.
I thought I should make this one first because it may be the most important for a hospital stay, and for healthcare in general. As an adult, you should know that you have a right to refuse any suggestion, treatment, or intervention offered by your providers. Of course, a lot of their suggestions are going to be really great ideas backed up by good reasoning, science, and clinical experience. But some of those suggestions won't be, and sometimes they might be unnecessary, harmful, or just plain annoying. For instance, I have caught a number of mistakes by doctors (usually young attendings that don't know much about CF) ordering completely useless or redundant tests, racking up hospital bills, and wasting my time. Nowadays, I almost always catch these things before they happen, but I remember when I was younger I didn't know how or feel comfortable enough to say no. I have developed somewhat of a reputation now with my docs and the pharmacists too: they know to ask me before making any additions or changes, because I almost always have a well-informed opinion about them. You are the only one that knows the details of your past medical history and the things that have worked (and not worked) in the past. Sometimes docs remember things like that, but so often documentation is not very thorough or they have too many patients to remember details, so it's up to you to record and keep track of your history and what was helpful in the past. I can't tell you how useful it has been to keep personal records of drug levels, test results, and dosages of IV meds - the pharmacists really appreciate it when you can make good arguments backed up by numbers, helping to guide them to find the right dosages for certain meds (vancomycin in particular).
Also assert your right to know everything about what they do to you, what they give you, and how things work. You have a right to have procedures, tests, drugs, and treatments explained to you in a way that you understand. If you have questions, don't be afraid to ask your team! Some docs will get upset by patients asking too many questions, but that is an unacceptable piece of medical culture that needs to change. But other docs actually love explaining things to patients, and really like it when patients want to know more. Healthcare professionals should be educators first and foremost, because patients should know how to take care of themselves as best they can so they can avoid coming into the hospital! Remember that you are the primary decision maker for your healthcare choices - don't let anyone convince you otherwise.
2) Get Enough Sleep
In my hospital there is a habit of the phlebotomists doing rounds to the rooms on my floor at 5 am to draw blood. Obviously, I am not a fan of getting woken up at 5 am to get stuck by a nurse, so I make sure they know (either with signage on my door or letting my nurse know) that I am not to be disturbed before 8 am for any reason. Getting enough sleep is absolutely critical to maintaining a healthy immune system for fighting infection. Our immune system does most of its work when we are asleep. Sleep quality also matters: 8+ hours of uninterrupted sleep is better than several 4-hour chunks throughout the night. If you are healthy enough not to need your vitals checked every few hours, tell them that the night time vitals should be skipped, or ask the docs to order them for only once a day. Other than bad hospital food, one of my primary pet peeves with mainstream hospital protocol is interrupting patients' sleep. How are we supposed to heal if we can't sleep?! If you can, let your nurse know that you need certain specific hours of the night to be completely uninterrupted - no vitals, no "peek-ins", no tests, no docs, etc. Sometimes there are things that can't wait (i.e. certain tests for drug levels at a specific time of day) but there are ways to work around that. Also, some docs do rounds very early, like 6 am, and in those situations I have found that they usually listen if you ask them not to come in until later, or not at all.
Also, try your best to reduce the noise level inside the room. I know we sometimes don't have control about the noise level outside the room, but when it comes to machine noises, those can be very distracting when you're used to a silent bedroom at home. I unplug or turn off as many machines as I can when I am sleeping, and I also cover up many machine lights, especially the little blinking ones (that drive me crazy!), usually with some alcohol pads and medical tape. Darkness is key to good sleep quality. If the little beeps and whistles can't be shut off, I use a fan to provide some white noise. I always bring earplugs and an eye mask with me just in case.
3) Eat Good Food
This can be a pretty hard thing to do, depending on your hospital. I remember trying to find anything edible at the hospital at Johns Hopkins when I visited there a few years ago, and all I could find on the menu was livestock-quality white rice and soggy over-cooked broccoli (their food company was the same that supplies to many prisons). On the other hand, my hospital here in Vermont has such a good menu that I don't have to supplement with outside food at all anymore, and it's pretty easy now to eat Paleo while I'm here! Medical establishments all over the nation are getting more hip to the growing body of evidence suggesting that proper nutrition is a primary mechanism for preventing and treating disease, and there is growing access to government funding for improving nutrition in hospitals. However, not all hospitals are aware of this yet, and so it may be necessary for some of you to supplement with outside food in order to eat food that will help your body heal and fight infection effectively.
Specifically, make sure you get plenty of fresh and cooked vegetables while you're there, especially leafy greens. Most hospitals have salad bars at least, so try to eat at least a little salad every day. Fresh fruit is also great, especially berries. There's also a lot that you'll have to avoid in the hospital: TONS of sugar everywhere (sodas, ice cream, pastries, sugary-drinks, junk food, etc.), things fried/baked with refined vegetable oils, and foods with hidden dairy and gluten. I know it's hard to resist the sugar-beast in the hospital because it's often free and you're encouraged to gorge yourself on anything while you're there. But remember that sugar feeds infection, plus we are much more insulin resistant while we're sick and laying in bed too much, so diabetes or glucose intolerance can worsen in the hospital. So make sure you've got good alternatives, even if that means you have to ask friends/family to bring you food from outside. My hospital offers CFers the option of having mini-fridges in our rooms, which can be super helpful in this situation.
4) Take Probiotics and Eat Fermented Food
Antibiotics can wreak havoc on our microbiome, which can harm our GI tract, cause indigestion, reduce absorption of food, harm our immune system, and make us more vulnerable to catching gut infections like Clostridium difficile. Therefore, it is critical that we eat plenty of beneficial bacteria, either in the form of fermented foods like sauerkraut, kimchi, kombucha, or yogurt (if you tolerate dairy), and/or in the form of a probiotic pill. I encourage people to take both, especially since species diversity is key here. Fermented foods generally have a lot of species diversity, often more diversity than pills, and this is important for maintaining high biodiversity of the gut ecosystem, as I've explained before on my website. Some hospitals now recognize the ENORMOUS volume of research on the benefits of probiotic therapy for boosting immunity and preventing gut infections (like C. Diff), so they may provide a probiotic in the hospital. But they may prescribe just one strain of Lactobacillus, such as Lactobacillus rhamnosus GG (a.k.a. Culturelle), and while most probiotics are better than none, one strain is not enough. You can't clearcut an old-growth forest, plant it with pine trees, and expect everything to function normally! Species diversity is key, so I suggest using that probiotic (if they provide it) as well as a high-quality multi-species probiotic. Not all probiotics are created equal, so I have written a guide here to help you find a high-quality probiotic. Probiotics should be taken at the end of a large meal or before bed, and at least an hour away from an antibiotic.
Also, thrush (yeast infections of the mouth) and gential yeast infections are common side effects of using IV antibiotics, and there are a few techniques I've used in the past to treat and to prevent such infections from occurring. In terms of prevention, taking probiotics and eating fermented foods is HUGELY helpful. But also, even though I don't eat dairy, I use plain yogurt (real yogurt with live cultures) as a mouth rinse every night before I go to bed (I spit it out, but if you eat yogurt you could swallow it). You can now also find unsweetened coconut yogurt (made with coconut milk instead of cow milk) in some natural food stores, which will function in the same way. My theory behind mouth rinsing with yogurt is that it populates the mouth flora with Lactobacillus so that yeasts like Candida albacans can't take gain a foothold on the oral terrain. Lactobacillus compete with yeasts for space and also can directly inhibit them. By taking probiotics, eating fermented foods, avoiding sugar, and rinsing the mouth with yogurt, I have prevented myself from getting thrush (which used to happen every time) for the last two hospitalizations. Hooray!
In terms of treatment of oral thrush if it's already established, I have personally used a strong calendula flower tea (steep about 4 tbsp of the flowers in a quart of hot water for at least 15 minutes covered, and keep in the fridge until use) with a little bit of goldenseal powder as an oral rinse. I use about 1-2 oz of calendula tea with about 1/8 tsp of goldenseal powder mixed in it, swish and gargle it, then spit it out. Do this 3-4 times a day until the infection is gone. Both calendula and goldenseal are strongly antifungal. During this time, also rinse the mouth with yogurt after gargling the tea, at least once a day. I have compared this method to using nystatin oral rinses that the doc has prescribed to me for thrush, and the efficacy is pretty much identical - both the nystatin and the calendula tea take about 4 days to get rid of a thrush infection. Obviously, I prefer the natural method myself. The tea is gentle enough that it doesn't hurt at all, it's actually quite soothing if the tea is cold, which is a perk because if you've ever had thrush you know it hurts like heck!
A genital yeast infection can be douched or rinsed with calendula tea. In addition, yogurt can be used as a douche before bed, plus cold yogurt can feel pretty nice on red, itchy skin. I know it sounds gross but it works! A probiotic pill can also be inserted into the vagina before bed, and the capsule usually dissolves overnight. The vaginal flora should be dominated by Lactobacillus species, so this method can be very effective if done every night for at least a week or as long as you're on (or recovering from) antibiotics. Another method for females is to score a clove of garlic, thread floss through it, and insert the clove into the vagina overnight with the end of the floss hanging out (so you can pull it out easily in the morning). Garlic is also strongly antifungal and this method can be very effective for getting rid of a yeast infection in about 5 days. Follow up with probiotics.
5) Avoid Triclosan
As many of you may have heard, triclosan is a common ingredient in antibacterial soaps used in medical facilities and has been shown to be carcinogenic and harmful to the liver in mouse studies [1]. Furthermore, it may increase risk of developing drug-resistant bacteria. Regular soaps that are not "antibacterial" are just as effective at killing germs but have much lower risk of causing antibiotic resistance [2]. Therefore, when in the hospital (and any other time) avoid using soaps or hand sanitizers with triclosan in them, and instead use regular soap or alcohol-based hand sanitizers.
6) Take Milk Thistle
Many herbs can be helpful in reducing side effects of drugs in the hospital and helping to improve the effectiveness of the drugs that you do take. However, some herbs can have interactions with drugs that may not be so good, so it's important to do your research and/or check with an herbalist when taking herbs in the hospital. That said, there is one herb that I think is very beneficial for most people who are exposed to heavy-duty drugs while in the hospital, that has no known herb-drug interactions, and is very safe: milk thistle. There is an immense amount of research done on milk thistle for its ability to help the liver process toxins, reduce liver inflammation/damage and elevated liver enzymes, and protect the liver from harmful substances. Other than those who have allergies to the Aster family of plants, milk thistle has virtually no side effects and is very safe even at high doses. I take milk thistle all the time because I am frequently exposed to strong drugs that may be harmful to the liver, and I always make sure that I take higher doses of milk thistle when I'm in the hospital. For the last two surgeries that I had, taking milk thistle before and after surgery helped me recover from anesthesia much more quickly than I have in the past (usually takes me way too long in the recovery room). Milk thistle can be especially helpful if you tend towards having elevated liver enzymes, if you have drug sensitivities or allergies, or if you have CF-related liver disease. Look for capsules of a milk thistle extract that contains 80% silymarin, ideally organic or equivalent. Take with food. I take 500-1000 mg daily, depending on my level of exposure to substances that may be harmful to the liver.
7) Take the Stairs
Exercise is so important in terms of airway clearance, regulating blood sugar, and building strength and resilience, and one easy way to make sure you stay active in the hospital is to take the stairs whenever possible. Sitting around in the hospital bed all day just makes me more tired. The more active I am, the quicker my recovery time. But I always try to listen to my body and let myself rest if I feel particularly fatigued, especially in the beginning of my admission when I'm feeling the crappiest. Also, I always try to get outside when I'm inpatient, at least once a day. Sunlight and fresh air are so important for health!
I hope those were some helpful tips! If you have any suggestions to add to this list, please leave comments below!
**********
Disclaimer: The content of this blog is for educational purposes only. I am not a licensed medical professional and this should not be considered medical advice.
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