Hello, I have been reading this board off and on for a couple years now I guess. Pretty much only when I am having a flare up and I am looking for info. I have a long history with asthma. I was very sick as a child in and out of the hospital with "pneumonia" and various other respiratory illness. When I was 6 my parents took me to a much larger teaching hospital and it was discovered I had atelectasis (spelling?) of the right middle lobe as well as cough variant asthma. I had a lobectomyashen I was 7 years old. My health improved significantly after the surgery but I still had asthma. Eventually it was pretty well controlled, and I didnt have many issues from the ages of about 10-21. When I was about 21 I met my now ex-husband. He was a smoker and an animal lover. Smoke is a huge irritant for me and I am very allergic to dogs and cats. My asthma and allergies got a lot worse and I started on a daily preventative asthma medication about 10 years ago. For several years I still only had a couple flare ups a year, which required prednisone and I would also take prescription cough syrup with hydrocodone to help with the coughing and anxiety I always feel during a flare up (feeling like you are suffocating or drowning tends to do that.). The last few years have been extremely difficult for me in terms of my asthma. I got divorced about a year and a half ago, so I am no longer exposed to animals or smoke, but my asthma continues to worsen. I am on pretty much everything possible to control it and still need pred about every 2-3 months. I was hospitalized for 4 days last June due to an exacerbation which I couldn't get under control. After 10 days of prednisone and using the neb every 2-3 hours I was exhausted and went in to the er for the first time in my life. I figured they would give me a breathing treatment and send me on my way as my oxygen levels are always fine. Instead, they admitted me and kept me for 4 days. It was during that hospital stay that I had a bone density scan and learned I have osteoporosis in both hips and and in several places in my spine, due to all the prednisone I've had to take in my lifetime. My asthma has gotten only worse in the last year. I have been on prednisone for probably 6 months out of the last year. I am currently on day 14 of a flare up right now (spring tree pollen) and no signs of getting better. I not only have the awful cough I have always had with my asthma, but my shortness of breath is so severe I can hardly function most days. On top of that I am a single mom with three young children, work full time and don't have much family support (well, my parents give me a lot of financial support but are not available emotionally or physically to help with kids). I am currently waiting on insurance approval to start xolair, but that doesn't help me right now. I saw my family doc on Saturday and had to decline his request to go to the er after my peak flow was only 150. If I go to the er they will admit me. Who will take care of my kids? How will I go to work? Instead the doctor explained very carefully to my 2, 5, and 9 year olds how they need to immediately call 911 if mommy gets any worse :-(. I'm so tired of feeling like this. I do everything right, I take my meds, I eat right, I'm not overweight. Yet I can't play with my kids half the time, can't read to them because it takes too much out of me etc. Is there anyone else here with asthma like mine? I just want to be better, but the truth of the matter is, I probably never will be :-(
The following 2 users give hugs of support to: Emily020609
juliepag (04-03-2012),MountainReader (04-02-2012)
I am sorry you are dealing with this. The one thing I notice is - and this might just be an omission on your part - no mention of treatment for your allergies. What are you doing about them - injections, meds, etc????
I take Zyrtec, atstelin, and nasonex for allergies. Have tried singular in the past with no effect. I have not been a candidate for allergy shots because the blood pressure medicine I take cannot be mixed with allergy shots. Not sure if I mentioned that or not but I also have high blood pressure which is fairly well controlled with 2 different medications.
It can be so incredibly frustrating. It sounds like you are doing many things right though.
Have you actually been to an allergist to get tested for what you are currently allergic to and the severity? Even if you can't do the allergy shots, it is good to know what your primary triggers in order to try to avoid them.
Do you have a Pulmonologist? If you aren't seeing a pulmonologist, you really should find one. They may have more to offer you.
If insurance doesn't approve your Xolair, the manufacturer has a foundation which can help if you qualify. I have had some chronic asthma flares in the past and really didn't have high hopes for the Xolair, but it has been a wonder drug for me. I've gone from being on 7/8 asthma and allergy meds a couple years ago to being off of all of them right now.
Do you carry and Epi-pen? If you do have a true breathing emergency, it can help open your airway and give you time to get that emergency help.
Hello Emily, I do hope you are feeling somewhat better today. I do not have asthma as bad as you but I want to agree with the thought of getting a pulman...heart doctor! LOL You need MORE help to get this under control. I wish you the best and help for your children. It must be very difficult for you. See if the school has an after school program for the kids until you feel better at least okay? God bless & heal you.
Thank you for the replies . To answer the various questions....I had allergy skin testing done a few years ago and I am allergic to everything they tested for except bird feathers (I think that was it). I had the highest response to cats, which I knew would happen as I am EXTREMELY allergic to cats. I also tested positive for allergies to dogs, all the tree pollen they tested for, all the molds they tested for, all grasses, and dust mites. I was on a Beta blocker for my hypertension at the time, which made the allergy shots contraindicated because there is a risk of anaphalaxis (sp) and the beta blocker could render the beta agonist, albuterol, ineffective. I have since come off the beta blocker at the insistence of my pulmonologist as beta blockers can make asthma worse.
I appreciate the replies and support! I have been feeling a lot better the last two days. I had not used my nebulizer for a while, I keep reading everywhere that my xopenex inhaler should work just as well as xopenex in the neb, and the nebulizer is a pain to take with me everywhere plus the 10-15 min it takes to use it. Anyway, I had just been using the inhaler and not noticing much difference. On Monday morning I finally used the nebulizer and about 15 minutes later I noticed I wasnt having any shortness of breath and I wasnt thinking about my breathing! Yay!!! It lasted for about 2.5 hours before the SOB came back. I used the neb again and it helped again. So, I am just going to keep using the neb now instead of depending on the inhaler. Anyone else have that where the neb works so much better than inhaler? Maybe Im using it wrong, but I wouldnt think so as I have been using inhalers my whole life. I also got awesome news yesterday that I was approved by my insurance company to start Xolair!! I am so excited and so hopeful it works for me. My pulmonologist office called yesterday and explained how it would all work. Apparently they order it from a specialty pharmacy along with an epipen in case of a reaction. They told me I will have to be monitored after my first injection for a few hours, which is fine, and also that I will probably start the injections next week. I am so anxious to find out if it works for me. My doc said not to expect my asthma to completely go away or anything, but if they can just get me off the prednisone we are in good shape lol.
I had a bad attack in the winter that I was having a really hard time recovering from, I felt like my inhaler wasn't helping. I went to the ER and felt a lot better after a nebulizer treatment. I find that if I have a bad flare up the nebulizer works better for me, maybe because I'm not able to inhale the medicine into my lungs as efficiently as I normally can.
They have smaller more portable nebulizers you might want to look into. They are over $100 but some are small enough to fit into a large purse and are battery powered.