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.
When I was a kid I spent a lot of time with my Mexican grandfather. The guy is a genius. He is both an electrical and mechanical engineer and worked for Amana Refrigeration for years. When hanging out with him, there were always projects involving wiring, plumbing, carpentry, combustion engines, drywalling, framing, painting, etc. The guy can take a car apart and put it back together without any extra bolts or washers lying around afterward.
Many times I remember helping him and accidentally messing something up. Once I stepped on a sheet of drywall and broke off the end. Several times I knocked over containers or tiny pieces and parts. I would volunteer to help and sometimes give up to do something more “fun” halfway through. I’ve broken tools and equipment on accident, and have become bored on many trips to find materials or needed parts.
Sometimes he became frustrated, but most of the time he acted like it was no big deal. Last weekend I was getting rid of some bank statements and other documents now that taxes are submitted. I got a new paper shredder and naturally Ruthie wanted to help. Who doesn’t love shredding papers?
I gave her a stack of things and before I knew it, the shredder was jammed up awesomely well. It took me 30 min with a long screwdriver to unclog the thing. At first I was frustrated and vocalized it, but then I remembered all the times I had screwed things up for my grandpa and realized it’s not that big of a deal. All I ever wanted to do was spend time with him and try to learn the amazing things he was capable of doing. I wouldn’t say using a paper shredder really compares to re-wiring a house, swapping out a water heater, or replacing the head gasket on a 1988 and 1/2 Ford Escort…but I try to put myself back in the shoes of a kid who wants to help. I’m happy to say I think I learned a lesson in there and Ruthie’s back on the paper shredding job.
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.
Functionality 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.
Recommendation? 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.
I hope everyone’s doing ok. Winter seems to be my best time of year since most of the plants outside are dead. I ordered a new, fancy CPAP cleaner this week and will write up a review once I’ve tried it out. It’s not a big deal to clean masks and cushions, but the hose and humidifier reservoir are things I’ve never been good about cleaning.
Like almost everyone I know, the flu came through our house. I was extra special and picked up two separate strains of it. I feel as though I’m also getting back on my feet from my last hospital adventures, etc. I’m also taking a break from school to sleep more and catch up on life. Next up on my To-Do list is taxes. It always takes me a while to compile, sort, and calculate itemized deductions for medical.
A couple of months ago I ended up at the ER again short of breath, with chest pains, flaring allergies, and low oxygen. They ended up keeping me a few days mostly because my o2 was in the 80s and my ABG came back not good. I ended up connecting with a great hospitalist who looked through my medical history and really wanted to track down the root cause of my health issues. She ran some tests and was in close contact with both of my lung doctors throughout the process. After being released I saw my second pulmonologist out in PA, did more tests and it was determined I do not have asthma.
Even after a couple of months it feels weird to say that as it has been a big part of my life for the past 23 years or so. I still have the breathing problems, but it was confirmed I do have vocal chord dysfunction (VCD) and my chords are pinching on exhale which really mimics asthma. I was often asked if it was hard to breathe in, assuming VCD could be pinching my throat shut on inhale, but for me it was the other way around. I was taken off a lot of medications and given a few new ones to take. I’m still having a rough time with Fall allergies, the rotting leaves outside, and smoke outside. I’m looking forward to winter when the outdoor allergens freeze and I’ll have a few months of better breathing. Hopefully my health will be in much better control next year.