Archive for Health

Another round of allergy tests

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.

Found a new allergist

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.

Tree pollen is kicking me in the lungs

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?

Automated Pollen Counter

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.

http://pollensense.com/

Wear your CPAP

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:

20150301_124101

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.

TriggerNeb reusable nebulizer set

I just got an email from JustNebulizers.com about a new neb set they offer. Is it just me, or are they making breathing treatments more and more like smoking a hooka?

TriggerNeb Reusable Nebulizer Kit: http://youtu.be/bcOUaD3LQFE

Automatic CPAP cleaner

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.

Price
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 think I’m over the flu

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.

Summer 2014 ER Trip #4 and Hospital admission #1

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.

I’ve made it halfway through August

Every year, August is an especially rough month for me and mister asthma.  A year ago today I was in the hospital having an awful time, not sleeping, and anxiously watching the clock waiting for the RT to come by for another treatment.  I hate being in the hospital and, in my dislike for being sick, I often try to bounce back earlier than I am able.

I should really listen to Liz more often, cause she’s never wrong.

It was probably 9 or 10 years ago I casually mentioned to Liz, “I have asthma kind of bad.”  That may not seem like a big deal or a bold statement to make.  In actuality it was my way of showing Liz I trusted her enough to nonchalantly downplay my serious respiratory condition.  Back then I tried to hide my asthma as much as possible.  I didn’t deny having the disease, but I let as few people as possible ever see me having any trouble.  A good portion of my life has been spent pretending like I’m ok, and it seems like people usually buy it.  There’s a lot you can hide by sitting, smiling, nodding, making hand gestures, and just acting chill.  When things got really bad, I’d just disappear for a few days in my apartment and no one thought anything of it.

In the past 10 years Liz has seen pretty much every aspect of the disease.  She’s seen me go from fine to gasping within seconds, she’s taken me to doctor’s appointments, and has sat with me on many, many hospital trips.  She’s picked up who knows how many prescriptions for me at the pharmacy.  She’s watched me try to walk down the hallway to get meds to end up on my face, on the floor.  She’s yelled at and threatened people illegally smoking in my general vicinity.  She’s explained over and over and over to people why I suddenly can’t go somewhere or participate in some planned activity.  She knows when I’m pretending to be ok.

Earlier this month I was in the ER again.  As usual I was sick of being sick, and worried about being away from work.  I stayed home for two days and against the advice of The Liz, I went back to work because I felt like I needed to be there to assist with a big upgrade.  Well, I showed up, pretended to be ok, worked a full day without lunch, and then spent the next 7 business days at home.  After going back to work I picked up a virus of sorts, became feverish, started coughing crap up, and watched my peakflows drop.  Thankfully Liz convinced me to stay home that entire week and by the end I could actually take deep breaths and in 7 days my peakflow numbers doubled.

I actually feel not so bad this time, and think this is the best I’ve been breathing since May or earlier.  Liz says this is the first time in 10 years I can say I’m doing better than I was last year.  Even though FMLA paperwork is the bane of my existence, listening to Liz and staying home for a couple extra days is way better than not and having to spend an extra week or two home.