Nightwriter
New member
Jennifer and Becky: Sorry it took so long for me to answer some of your questions. Let me give you a quick overview. When I first met my Doctor, she said she would treat me holistically. Which means treating the WHOLE person, not just the lungs. She combines medication and what she calls "protective measures." She skin tested me for allergies. Checked IGE levels. Suprisingly I didn't come up very allergic. But remember they can't test for everything! The doctor says that I am "chemically sensitive." There are no tests for this.
This is where you have figure out what makes you sick. For example: New mattress that has flame retardant? Does your vacuum kick out dust and exhaust? Do you wear fragrances? Clean with harsh chemicals (like Ajax, etc.) Have furniture that gives off formaldehyde? Get your nails done (inhaling fumes)?
Most CF people have hypersensitive airways. You may not have allergies. But these things irritate your lungs causing inflamation, and swelling airways. You must cut out irritants. I had to change things in my house. If you want to do this too -- google a website called the Canadian Mortgage and Housing. Under search, put in "Fighting Asthma in your House." This checklist is pretty good.
Okay, so first the doctor had me describe my house and find the things that were making me sick. She also looks at people's work. Sometimes the clues are there. Are you Xeroxing often? Are you around car/truck exhaust? Do you work with chemicals, fumes, new building, new carpet, fresh paint? Lots of things...
Next, she said something was making me get pseudomonas infections all the time. But what was the source?
CT scan of my sinuses. 100% blocked on one side. Bingo. Had no symptoms. So liquid just sitting in the sinus cavity probably with pseudomonas. I had surgery scheduled -- but within 5 months, the doctor got it to open and to drain naturally using nasal rinses, Singulair, and some nasal sprays. So surgery cancelled. This is really important! If you have a post nasal drip, the bugs are dripping slowly down into your lungs, especially when you sleep - and causing infection. Plus you get stomach irritation too. The tubes are right next to each other. Get rid of the causes of a post nasal drip.
Next, if I were to remain a patient of hers I had to be compliant. She did not want to put the time into explaining, teaching, unless I was compliant. The second most important thing! Your environment. I had to get rid of the carpets (that didn't happen until I moved) they hold dust, mold, chemicals. Bought a Hepa vacuum (I got a Nilfisk) and an air purifier (she recommended AllerAir 5000 VOC). I live in smog so windows closed, air conditioning on. In the car, windows closed, AC on, recycle air, so you don't get car exhaust.
I had to avoid smoggy air. High winds especially on high pollen days. Avoid very cold air. And when I'm not feeling well -- stay away from places that were irritating to my lungs (or wear a charcoal mask). Some examples: Department stores where the new clothes really smell (imports are sprayed with chemicals these days), shoe stores (leather gasses off), the cleaning section in the supermarket. I shop when I feel well, but generally avoid these fragrant places or wear a mask.
Diet: Organic is preferable. No sulfites. Try to eat things that don't have processing, added chemicals, artificial food colorings, white sugar (makes hemoptysis worse), cold drinks or very cold food (closes airways).
Supplements: This is what she prescribed for me: daily vitamin with no fillers, binders (I take All One powder), fish oil, 10-15 strain probiotic, glucosomine condroitin, vitamin C, E, digestive enzymes (I'm pancreas sufficient). I have added Tumeric and NAC plus a few others.
Meds: My doctor changes them depending how I am. As far as exacerbations, she determines if it's inflammation or infection. I'm not the one who decides to get abx. Usually it's inflammation. What preceded me getting sick? Exactly how sick am I? How severe are the symptoms? Are my nose and eardrums red and swollen? Then my lungs probably look like that too. If I can't get my airways open with treatments and protective measures (avoiding further irritation), I get a cortisone shot or a few days on oral steroids. Culturing bacteria does not get me on abx. Sometimes the bugs are just sitting there doing nothing. Inflamation can cause fever, chills, aches, mucus production...most doctors do not recognize this. It's straight to abx.
Currently my meds are: Spiriva, Claritin, Brovana (new bronchodilator), Intal inhaler, hypertonic saline, Asmanex, and nasal sprays Nasalcrom, Astilin, and Nasonex.
NOTE for Becky: You are lucky your doctor recognizes an asthma component and is treating with all the asthma meds. Ask about sinus rinses. Some 4 year olds are doing them. I don't know whether kids are given Spiriva or the nasal sprays I'm on. Try to use soap, shampoo, laundry detergent and fabric softener without fragrance. Encases her pillow and mattress with allergy protectors. Keep pets out of the bedroom.
It is impossible to teach everything that I've learned during the last 12 years. This is just a start. Keep a diary. Each time you or your CF child is sick, go back and see triggers. Some things are cummulative, some irritating events are within a day or 2 of onset of symptoms.
And let me know if there is any progress.
This is where you have figure out what makes you sick. For example: New mattress that has flame retardant? Does your vacuum kick out dust and exhaust? Do you wear fragrances? Clean with harsh chemicals (like Ajax, etc.) Have furniture that gives off formaldehyde? Get your nails done (inhaling fumes)?
Most CF people have hypersensitive airways. You may not have allergies. But these things irritate your lungs causing inflamation, and swelling airways. You must cut out irritants. I had to change things in my house. If you want to do this too -- google a website called the Canadian Mortgage and Housing. Under search, put in "Fighting Asthma in your House." This checklist is pretty good.
Okay, so first the doctor had me describe my house and find the things that were making me sick. She also looks at people's work. Sometimes the clues are there. Are you Xeroxing often? Are you around car/truck exhaust? Do you work with chemicals, fumes, new building, new carpet, fresh paint? Lots of things...
Next, she said something was making me get pseudomonas infections all the time. But what was the source?
CT scan of my sinuses. 100% blocked on one side. Bingo. Had no symptoms. So liquid just sitting in the sinus cavity probably with pseudomonas. I had surgery scheduled -- but within 5 months, the doctor got it to open and to drain naturally using nasal rinses, Singulair, and some nasal sprays. So surgery cancelled. This is really important! If you have a post nasal drip, the bugs are dripping slowly down into your lungs, especially when you sleep - and causing infection. Plus you get stomach irritation too. The tubes are right next to each other. Get rid of the causes of a post nasal drip.
Next, if I were to remain a patient of hers I had to be compliant. She did not want to put the time into explaining, teaching, unless I was compliant. The second most important thing! Your environment. I had to get rid of the carpets (that didn't happen until I moved) they hold dust, mold, chemicals. Bought a Hepa vacuum (I got a Nilfisk) and an air purifier (she recommended AllerAir 5000 VOC). I live in smog so windows closed, air conditioning on. In the car, windows closed, AC on, recycle air, so you don't get car exhaust.
I had to avoid smoggy air. High winds especially on high pollen days. Avoid very cold air. And when I'm not feeling well -- stay away from places that were irritating to my lungs (or wear a charcoal mask). Some examples: Department stores where the new clothes really smell (imports are sprayed with chemicals these days), shoe stores (leather gasses off), the cleaning section in the supermarket. I shop when I feel well, but generally avoid these fragrant places or wear a mask.
Diet: Organic is preferable. No sulfites. Try to eat things that don't have processing, added chemicals, artificial food colorings, white sugar (makes hemoptysis worse), cold drinks or very cold food (closes airways).
Supplements: This is what she prescribed for me: daily vitamin with no fillers, binders (I take All One powder), fish oil, 10-15 strain probiotic, glucosomine condroitin, vitamin C, E, digestive enzymes (I'm pancreas sufficient). I have added Tumeric and NAC plus a few others.
Meds: My doctor changes them depending how I am. As far as exacerbations, she determines if it's inflammation or infection. I'm not the one who decides to get abx. Usually it's inflammation. What preceded me getting sick? Exactly how sick am I? How severe are the symptoms? Are my nose and eardrums red and swollen? Then my lungs probably look like that too. If I can't get my airways open with treatments and protective measures (avoiding further irritation), I get a cortisone shot or a few days on oral steroids. Culturing bacteria does not get me on abx. Sometimes the bugs are just sitting there doing nothing. Inflamation can cause fever, chills, aches, mucus production...most doctors do not recognize this. It's straight to abx.
Currently my meds are: Spiriva, Claritin, Brovana (new bronchodilator), Intal inhaler, hypertonic saline, Asmanex, and nasal sprays Nasalcrom, Astilin, and Nasonex.
NOTE for Becky: You are lucky your doctor recognizes an asthma component and is treating with all the asthma meds. Ask about sinus rinses. Some 4 year olds are doing them. I don't know whether kids are given Spiriva or the nasal sprays I'm on. Try to use soap, shampoo, laundry detergent and fabric softener without fragrance. Encases her pillow and mattress with allergy protectors. Keep pets out of the bedroom.
It is impossible to teach everything that I've learned during the last 12 years. This is just a start. Keep a diary. Each time you or your CF child is sick, go back and see triggers. Some things are cummulative, some irritating events are within a day or 2 of onset of symptoms.
And let me know if there is any progress.