It’s been almost a year since Ive updated my asthma status. Here’s the latest report card. For the year, I give myself a C +

In general my lung function has only declined a couple percent which is good. The problem of course, is that when you’re down in the lower ranges like I am, even the slightest change can have a huge impact on the way you feel. My baseline FEV1 now ranges from 33-42%, compared to 36-47% a year ago.

Probably the most noticeable change, and my biggest complaint by far, is that I get short of breath much faster now when engaging in even physical activity. Magnify that 3 or 4 fold when I do activities like racewalking or marathon walking.

My dependence on opiates and anxiolytics to quell my breathlessness keeps growing. Where I used to only take these drugs occasionally, I now take them on a daily basis.
The good news is that they do help and have probably kept me out of the hospital on more than on occasion.

My medical establishment labels are unchanged ( no big surprise there). Under the GINA guidelines, I’m still labeled a severe persistent asthmatic. Under the brand new SARP phenotypes for severe asthmatics, I’m labeled a Catagory/Cluster 5, Childhood onset asthmatic. ( Thank you Dr Wenzel)

Symptoms
• I’m pretty much short of breath to some degree all the time now (even when I’m in my green zone). Most of the time it doesn’t bother me because I’m used to it. But in addition to the low level chronic breathlessness, I’ve also been getting these short, but very intense bouts of dyspnea which seem to spring out of nowhere. The sensation is like that of sudden suffocation. It’s like someone put a bag over my head. It feels like my respiratory muscles are too weak to expand my lungs when I take a breath in. The sensation makes me anxious, which then perpetuates this viscous cycle of not being able to catch my breath. It’s awful. This video ,which Ive used before in my blog posts, does a great job of depicting what these intense mini attacks kinda feel like. The only difference is that I don’t struggle the way the actor does in the clip.
  Thankfully these bouts only last an hour or two and are usually relieved with meditative breathing, multiple back to back neb treatments and sometimes opiates. Unfortunately, these intense flares seem to be occurring more frequent now….almost daily. They’re probably a result of declining lung volumes and increased sensitivity to air-trapping.
• For the last 6 months I’ve also noticed a slight, but persistent audible insp wheeze when I breath. Hence, the “Inhaler voice” It’s more annoying than anything else, but I hate the way it makes my voice sound. ENT actually checked my vocal cords and they look fine ( no stenosis)
• It’s becoming increasingly more difficult for me to sleep laying flat. I now have to pretty much sleep with my back propped up, almost to a sitting position. Last year I switched from a conventional bed to a foam bed, which helped ease my lower back pain.
• A noticeable decreasing tolerance to exercise and physical exertion in general. I get winded much easier now when I do any type of exercise or walks.

Incarcerations

• 2 hospital admissions so far this year, totaling 12 days. 8 of those in the ICU, and 2 of those on a ventiltor.
• Ive had one intubation this year, bringing my lifetime total to 16 ( we’re talking Ripleys Believe it or not stuff)

Fitness and Diet
• Despite my worsening dyspnea, I still force myself to walk at least 4 days a week ( 4-6 miles per walk) and even farther when I’m training for a race.
• Earlier this month, I switched to an all organic diet. Additionally, Ive cut my sugar intake in half and eliminated HFCS almost completely. It’s way too soon to see how much of an impact this new way of eating will have on my health in general, but I suspect it will eventually be a positive one. How could it not.

Treatment Plans
• My Asthma action plan and medication list are pretty much unchanged, except that I take methadone (10mg) every evening now.

New Treatment Options
• Bronchial Thermoplasty is no longer an option for me. My asthma is too severe, my lungs are too scarred. (* Speaking of Bronchial Thermoplasty, this is one of better articles Ive read on the subject. It’s objective, factual and well written)
• I’m waiting for clinical trials to begin ( hopefully by this time next year) on some new Th2 (IL-4/IL-13) blocking drugs.

  Th2 blocking drugs (if they turn out to work), block protein factors related to, but not the same thing as, allergy. These blockers are believed to work “higher up” on the immune inflammatory cascade (where things are getting started) so that they “could” block more things of relevance to asthma. I have a problem with mucus blocking my tiniest airways, which causes me to air trap. (air trapping is the number 1 cause of my suffering). We’re hoping that this new class of drugs might help with that. ( per Dr Sally Wenzel)

This is what I call my Hospital survival kit. Always packed and on standby 24/7, my HSK is a small carry bag I keep in my bedroom, that’s filled with everything I might need for a hospital stay.

If (or when) I get sick and have to go to the hospital, all I have to do is grab the bag and GO!

When you spend as much time in the slammer as I do, there are certain essentials you’re going to need to make your stay a little more bearable.

So what do I have in my HSK ?

*Introduction note: (See this earlier post for more details), but basically it’s a note from your personal physician summarizing your medical condition.

*List of medications: Since I’m probably not gonna be able to do a lot of talking to the triage nurse or the doctors, a pre-written list of all my medications comes in really handy.

*Extra clothing : Underwear, t-shirt , Socks etc.

*Toiletries: A few of the things that can make you feel like a human again, especially if you’ve been on the ventilator for a few days , are some clean underwear, a shave, a shampoo , some deodorant, and of course some good oral care help.

*Extra inhalers: As crazy as it sounds, an extra albuterol inhaler is an essential part of the HSK. Even though you’re in the hospital, it can sometimes take too long to get a PRN neb treatment. I can’t tell you how many times having my inhaler, saved me from crashing. ( If you carry one, my advise is not to tell them or they might confiscate it.)

*Phone and Charger: Hospitals can be very lonely places. Not to mention the hospital room phones can be pretty gross. My cell phone or computer is often my only connection to the outside world. Since I’m sometimes too short of breath to talk, texting is the way to go. And of course the camera is useful for blogging purposes ( as we all know).

* Pencil and paper: If you have a breathing problems, or wanna remember peoples name, or just wanna be able to fill out the food menu without tracking down a nurse, these simple items can be very useful. If you end up on bipap or a ventilator, they’re absolutely essential (unless you’re good with sign language.).

* Credit card and cash: Hospitals are more like prisons than you might think. It’s always good to have a credit card or a little cash on hand, in case you need to buy something.

So, what do y’all carry in YOUR Hospital Survival Kits?

Back in the old days when you got sick and ended up in the hospital, it was probably because your primary care doctor put you there. Boy, have things changed.

Nowadays you have one set of doctors who see you in the clinic when you’re doing well, another set of doctors who see you if you need emergency care, and yet another set of doctors who take care of you if you become hospitalized . Many times these “hospital” doctors know little, if anything, about you except what they observe right there on the spot and /or what they can read about you from prior admissions. If you receive your medical care at a huge teaching institution like I do, it gets even more impersonal, because you have multiple teams of student doctors and residents that rotate through the system a every 3 or 4 months. Chances are, you’re gonna see a different doctor every time you go in.

This system seems to work fine if you’re generally healthy and don’t need frequent medical care, but if you have a complicated medical history and don”t fit the mold ( like yours truly), then things can get a little frustrating…especially in the Emergency room.

That’s where the patient “intro letter” comes in. More and more Physicians are writing these kinds of letters for their medically complex patients (not just severe asthmatics) to carry with them. If you ever end up having to go to an Emergency room ,the letter basically introduces you to the staff and provides the physician with some basic information about current health problems. It can save you from having to recite your entire medical history over and over again to people who don’t know you ( this is especially helpful, when you can”t breath). It can include valuable information on what seems to work best in treating your condition.

The letter below was just updated a few days ago by my Pulmonologist, and is the actual letter I sometimes bring with me to the ER .

(And Yes… the feeling of suffocation I sometimes get during a really bad flare up, can make me a little anxious. IV Fentanyl and Ativan in tiny doses helps take the edge off. Of course everyone reacts differently to narcotics and most physicians are very reluctant to give them to their respiratory patients during a crisis, but for me they really help.)

Yesterday I was in the green and walked 6 miles. Today I’m tittering on the red and I’m unable to do much of anything . I usually don’t post when I’m in the red zone because even typing is a chore , but I wanted to document just how fast things can change when you have the uncontrolled form of this disease

If you gage symptom severity by peak flow measurements, then I’m actually borderline red/yellow.( you’re in the red zone when your peak flow drops below 50% of your baseline. My baseline is 575, and today’s reading is 300.)

If my peak flows hold at 300 , I’ll just tough it out , take a few extra nebs and re-assess later today. If my peak flow drops below the 300 mark ,and stays there, I’ll bolus myself with 60mg of prednisone and cross my fingers.

The next 24-36 hours are the wait and see hours. If I’m going to break through , it will happen within the next 36 hours and I’ll be back out there walking by tomorrow as if nothing happened. If I don’t break through, it means a hospital stay is imminent

I have a very high tolerance for respiratory discomfort , which means that I usually postpone “going in”. Most Emergency room Physicians will tell you that waiting to come in, is the worst thing you can do. I know my disease better than anyone AND I’m a licensed Respiratory Care Practitioner. Most of the things that they do for me in the hospital, I can do for myself at home. I only go -in when I’m absolutely sure that I can’t handle it on my own or if I start to fatigue-out. You see, once the whole hospital process begins, you just never know what the outcome will be.

Generally when I go to see my doctors , its the ole same drill. ” “Oh You look so much better than the last time I saw you” or ” How’s your breathing?” or “What have your peak flows been like?” or ” Have you been using your inhalers a lot?…” “Well , just keep doing what you’ve been doing and I will see you again in 3 months”. Basically, there’s nothing new they can offer me.

Yesterday’s visit was a little more productive. It was my first follow-up visit with my primary care Physician, since I was discharged from the hospital 2 weeks ago. Though she’s never actually taken care of me when I’m sick in the hospital ( I have other doctors for that) , shes one of the best medical providers I ever had. She never pulls any punches and always tries to go beyond the main complaint of the day. Her approach to medicine is to treat the whole body and she’s very open to alternative therapies. Anyway, for the first time ever, we had a heart to heart ( or as close as you can get to one with a doctor) . She spent a full hour with me and we discussed everything from quality of life issues to setting realistic goals for my walking.

You see, from a medical standpoint, I’m considered to be a severe or even an end-stage asthmatic. (Statistically I should have croaked years ago.) No one really knows why or how, I keep going. This doctor believes that its my fitness walking abilities that keeps me alive. Probably the cardio and the aerobic benefits, not to mention the psychological high I get from it. She thinks that if I led a sedentary lifestyle that I wouldnt be around to blog all of this stuff.

As far as setting realistic goals for my walking, that’s gonna be a tough one for me. She thinks that my attitude about continually pushing myself to go farther, might not be so good for me. She kindly pointed out, that Im not only battling the effects of lung disease, but also of my ” advanced age”. After all , even a totally healthy person starts to slow down when they get into their advanced years……. YIKES….. did she say Advanced Age?? I never thought of myself as advanced. I admit it…. my body is 51 years old . I don’t think I look 51, but I guess no one thinks they look their age. But really….I don’t look my age!!! which doesn’t make sense because this disease and the drugs associated with it, have ravaged my body. I should look older than my actual age. Anyways, she goes on to say I should be proud of all my achievements so far and that if I eventually do a full marathon…great! If I dont, its not the end of the world…..Or is it?

Mind you, she is one of the few physicians that strongly supports my walking program. She thinks its the best the thing that could happen to me at this time in my life but , Im sure she also thinks that I’m just wee bit obsessed with the whole business.. The truth is..Im not . Distance walking is extremely hard for me. I do it strictly to challenge myself. If I’m gonna do something, I wanna be good at it. Racewalking is no different. It takes tons of practice and a commitment to keep it up, so that’s what I do.

Heck, if I could obtain the same health benefits by laying around the house eating jelly donuts, don’t you think I would.