Well, it’s my *favorite* month of the year and 2015 is similar to the rest. There are some bright spots though, I haven’t been in the hospital yet this summer, my meds have been tweaked to a decent combination, and I have an appointment with a VCD specialist next week. I’m currently on my 3rd prednisone taper since July and my lung doc put me on some anti-biotics today. I’m hoping I can buck up over the weekend and get back to work on Monday. I’m hoping I can weather out the summer and then have a decent winter and spring. We’ll see what happens.
Archive for Health
The other night I was watching The Departed (2006) around 3am, wheezing and feeling miserable, when I realized my asthma can be personified by “Marky” Mark Wahlberg’s character, Dignam.
Hey Asthma, think I’ll make it to work tomorrow?
…get out and socialize with friends?
…be able to take a walk with the kids?
…make it over to Rally’s before their Two Big Bufords for $5 deal goes away?
…see the new Mad Max movie in the theater?
…go see my friends in the Wizard of Oz play?
…hang out with my cousin when she passes through on her coast-to-coast road trip?
…go to Lebowski Fest this year?
I’m not even sure why I ask anymore. The answer is always the same.
Methacholine challenges are not fun at all. They usually take about an hour and consist of breathing in methacholine, which causes a reaction in asthmatics, and seeing what happens. After each dose, spirometry is done to see how the patient’s breathing if faring. If your lung function reduces by 20% or more, you’re asthmatic.
I have now done four of these tests. Two of them have been negative, and two have been positive. Last week, my test was definitely positive. I don’t see my doc for a few weeks, but I assume he’ll agree with the results. Since my previous methacholine challenge last fall, I have been off all asthma maintenance meds. I was also off allergy meds for roughly two weeks this time. While asthma isn’t a preferred diagnosis to have, it definitely uncomplicates things.
Since the test I’ve been able to go back on all my meds, and I’ve started using Dulera again. I’m tracking peakflow numbers during this month and I’m guessing they’ll be trending upward. I think I was overmedicated on asthma meds for a very long time with other things going untreated or under-treated. It would be really awesome if my health could stabilize and I not end up in the hospital this summer.
So far I’m really impressed with my new allergy doc. He’s taking the bull by the horns, so to speak, and baselining everything. A couple weeks ago I had the giant-grid scratch test on my back, and this morning they followed up with subcutaneous testing on my forearms. The injection sites responded as expected. I had a lot of +4 with the hives measuring up to 20mm x 20mm. This time the nurse even put tourniquets on my arms after about 10 minutes to slow down the reaction. What was really impressive to me was how they contained the hives afterward. They rubbed my arms down with alcohol, sprayed them with liquid benadryl, and then gave me zyrtec. Other times with other doctors I’ve been sent out the door and told to take some benadryl if needed.
Next up I have a methacholine challenge. This will be my fourth one; the difference is I’ll be off allergy meds for a while. Usually they are adamant about stopping short-term and long-acting respiratory medications, but don’t mention anti-histamines. I’ve had both positive and negative results in the past, and medications I was taking probably had something to do with that.
Last summer/fall one of my pulmonologists decided I probably don’t have asthma based off a methacholine challenge, but not all the docs have been in agreement on the diagnosis. While tracking peakflow numbers, I’m going to start using Dulera again after the challenge and see what my numbers do over the course of a month. All the tests and what-have-you aren’t the most fun, but if we can prevent another “classic summer” filled with ER trips and being admitted to the hospital, it’s definitely worth the trouble.
So I finally had enough of the only allergist in town not responding to my needs to control allergic reactions. A friend at work suggested another doctor who is about 90 min away, but promised he was good. I made an appointment and got in this past week. I was quite impressed.
- He used to work at Jewish National
- He knows who Dr Wenzel is and greatly respects her
- He wants to collaborate with my pulmonologists
- He wants to run a bunch of tests
- He wants to find out if there are other things I’m allergic to
- He wants me back on xolair
This is what I’ve been asking for the past 3 years to no avail. My allergies not in check means my breathing is not in check, but anytime I mention “breathing” to my old allergist she shuts down. It’s quite frustrating. The interesting part of the story is the old allergist and the new allergist are colleagues and personal friends. I’ve been asked to just say I’m getting a 2nd opinion to not cause a big issue right off the bat. We’ll see how this works out.
It’s definitely that time of year again. The trees are twitterpated and spreading their pollen all over the place with little regard if people like me even want their powdery, yellow/green gift. My nose runs, I sneeze, my eyes burn and swell; I cough, my throat hurts, my skin turns red, and I wheeze; I get headaches and it’s hard to breathe.
In talking with my lung doc he’s fairly certain I’m getting mucus plugs in my airways as well as swelling and inflammation. They’re trying to keep me off prednisone so for the time being I’m taking vitamin C, vitamin D, and magnesium. The magnesium seems to really help with the wheezing. I also picked up a couple incentive spirometers which I use daily to help “pop my airways open.”
It’s kind of like breathing exercises and would benefit anyone. Many recognize these as “those things you breathe into at the hospital.” Right now I’m keeping one at work and another at home. It’s kind of like a reverse peak flow meter. It’s interesting to see on the days I feel really bad I’m only able to inhale 1500 to 2000 ml and on good days I’m able to do more around 3000 to 3250 ml.
My larger goal in all this is to stay out of the ER/hospital. There have already been times I probably would have gone in several years ago, but now with my added experience and know-how, I’ve learned how to deal with it at home. I think I’ve had six times so far in the past month where my allergies have become so bad to significantly affect my breathing. I’ve found the trick is to take lots of antihistamines, relax, and chill with my CPAP on for as long as possible. It has resulted in some pressure sores/lesions on my face, but I’ve figured out how to avoid those as well. How’s the allergy season going for you so far?
I came across this site today. It’s a project where a team is working on a device to have in your home that detects amounts of pollen and other particulates in the air. This could help those sensitive to air pollutants to know what is bothering them. I think it would be really interesting to have that kind of data, but maybe not at the $350 price tag listed in their survey. I happen to be allergic to almost everything outside so I’m not sure how knowing those allergens are present would help me. What’s really interesting is how this data could possibly supplement data collected nationally. It’d be kind of like a home weather station, only an allergy station.
If you suffer from sleep apnea or a similar conditions which requires you to wear a CPAP/BiPAP/APAP, it is very important you do. It always shocks me when I talk with friends who are supposed to be wearing their mask at night but instead choose to put it in the closet, etc., because they don’t like it. Personally, I’d rather not sleep than sleep without my CPAP and last week unfortunately proved that for me.
It was Saturday morning/afternoon and I was out in the living room watching TV. The next thing I know, Liz is yelling and yelling at me to wake up. I had unintentionally fallen asleep for 90 min or so on the couch. Little cat naps aren’t supposed to be a big deal, but they are for me. I felt awful and was having trouble functioning. I made it to my room and got my mask on. Later that evening I walked to the kitchen to get some water and my O2 sat was down to 81%. I then spent three of the next four days like this:
In addition to getting nothing done and missing some work, I also now have a sore on my face from where my mask rests. I’ve gotten red marks before from having my humidity turned up too high, but this is worse. I’m sure the best thing for it would be sunshine and open air, but I have to put my mask back on every night. My CPAP cleaner does a good job of sanitizing everything, but I’m not sure what to do about the sores on my face. I am thankful my oxygen levels are back to normal and I’m not constantly short of breath.
I think it’s fair to say most CPAP, BiPAP, Auto-PAP, etc., users dislike having to clean their equipment. If you’re like me, you think about it right before you need to use it. I’d been hearing good things about the SoClean 2 from Better Rest Solutions, and decided it would be a good idea to try it out.
The price is a bit on the expensive side. I got mine from National Sleep Therapy with a coupon code and that helped. I’ve been having so much trouble with colds and other viruses, I thought it was worth trying. Luckily I had FSA money to use.
The unit includes a short instruction manual that made it quite easy to figure out how the SoClean 2 works. My CPAP has an attached humidifier and there are directions for those with or without humidifiers. There are also additional instructions for those with heated hoses. The SoClean 2 can run on a programmed scheduled, or be ran manually. It comes preset to clean at 10am. After I wake up in the morning, I place my mask into the cleaner, shut the lid, and it’s clean when I come home.
How it works
I’m no scientist and therefore am unable to accurately describe exactly what happens. The SoClean 2 uses activated oxygen to clean your mask, cushion, hose, and humidifier. It runs for 5 to 10 minutes, and then you must wait 2hrs before using your CPAP again. With all my breathing issues and winter woes contracting sickness from everyone I’m around, the last thing I need is my own medical equipment perpetuating sickness. There are some comments about a smell from the cleaning process, and I read one review where it was described as a swimming pool/chlorine smell. That kind of makes sense, and I want to point out it doesn’t bother me at all. It doesn’t stick around very long. It is suggested you run your machine for 20 seconds or so to clean the smell out. All I know is that if I’m lazy and don’t clean my mask/cushion for a week, the smell from that is much, much worse than what the cleaning leaves behind.
I would definitely recommend this unit if you have the money to spend on it. There are some replaceable pieces you do need to take care of every six months, similar to replacing parts of your nebulizer or CPAP. The cost isn’t too bad, currently $30 gets you the replacement kit from Better Rest Solutions. You can still clean your machine as usual with soap and water. I’m finding this convenient, time saving, and it gives me piece of mind.