Asthma Awareness Month: My Life with Severe Chronic Asthma

This is a long post, so get comfy. :) Every year, the Asthma and Allergy Foundation of America or AAFA declares May to be "National Asthma and Allergy Awareness Month." Spring in the US is a prime suffering time for people with asthma and/or allergies; right now trees are pollinating where I live and it's not fun.

Lung Update

It's been a while since I posted anything about my lungs and the surgery, bronchial thermoplasty, I had. The last procedure was in early October, seven, almost eight, months ago. It's hard to believe it's been that long. For months prior to the surgeries I was in and out of the doctor's office and the hospital for testing, paperwork, more testing and yet more testing. After each of the surgeries, I had a 2 week check-up appointment. Since the appointment after the last surgery, I haven't been in and it feels weird. The hospital was practically my second home and I haven't been there in months. That's a good thing, it just feels odd.

It's also a good thing that I have only been to my regular asthma doctor's office a few times in all those months. I had a big asthma flare beginning at Christmas time that lasted about six weeks, which necessitated several visits to my regular asthma doctor's office and involved an allergic reaction to a drug. That was an uncomfortable one but I've had worse ones, worse by far. Winter, and especially the holidays, are not unusual times for me to have asthma trouble so I figured I was due for one bad episode. Other than that though, I've been doing well. I still need my rescue inhaler from time to time, but those have been for fleeting episodes and I haven't needed my nebulizer or steroids except for that episode. I haven't been able to go off any of my prescriptions but I was told in advance that would be the case. I've been quite healthy and it's a little scary. It's been so many years, what with the asthma and other health issues, since I wasn't sick on a regular basis that it feels abnormal at times. But it also feels wonderful and I'm slowly exploring what I am now able to do again. Now, the asthma is not cured, there is no cure, the best I can hope for is a reduction in my symptoms and I am definitely seeing that. :)

So, my lungs are calmer, life is good, and I am looking forward to continued improvement as the improvement can continue for up to two years after the surgery. I  have high hopes for this procedure and I hope it will soon be available to all people with severe chronic asthma and not just to participants in the trial studies.

A reminder what lungs with asthma look like, oh and these are when the lungs are quiet, not in the midst of a flare. They're narrower obviously when there's active inflammation:

Crispy Fried Lungs, Round Two

Heh, that's kind of an icky image but a friend of mine referred to my surgery that way and it appealed to my, admittedly odd, sense of humor. Hey, there's a reason we're friends. LOL So, if all has gone according to plan, I'll be at the hospital as you read this for the second operation in my lung re-model. As some of you know, I have severe chronic asthma that is not under control. I enrolled in a research study for a new procedure where they burn away, yes burn, some of the excessive smooth muscle in the lungs. All asthmatics have extra smooth lung muscle; the more you have, the worse the asthma. So, in theory, getting rid of it will help reduce the severity of the asthma. I certainly hope so; life would be so much simpler. Below is a pic of a 3D model from my doctor's office of normal and asthmatic lungs. Once upon a time I was normal, don't laugh I really was!, and over the years I've deteriorated into severe.

If everything proceeds smoothly, I'll be at the hospital about eight hours, then back home. Supposedly, most people go back to work the next day. After I had the first procedure, I was out for nine days, developed pneumonia and ended up in the ER. So this time, I took off the rest of the week from work. With luck, that will be all I need and will return to work next Monday.

After this procedure, I have one more. Rather than doing both lungs at one time, they do a portion each time. I don't know when that one will be but at the earliest it would be three weeks from today. I've kept the blog light this week but I've got a few posts planned and I'll likely post health updates on twitter and facebook.

So, that's it. I'll see you all when I get home. 

ETA 9/26: I'm home, coughing and wheezing but not too badly, everything considered. I'm on my couch, watching tv and surfing the net.

I found a pic of what the doctor does while inside my lung, it's from the website for the procedure.

That device you see is the specially designed catheter that "cooks" the muscle so it's thinner and thus, theoretically, less reactive which should reduce the number and severity of flares and attacks. I hope.

Frustrated: Lung Update

Flickr Image by Rafael Edwards

 
So yesterday I was ranting and raving on twitter and facebook. I got a call from the research nurse whose been my contact for the lung surgery study; she informed the company who is sponsoring the study about my reactions to the first procedure: the asthma exacerbation and the pneumonia. They called her back and said that because of the pneumonia, they want a minimum of six weeks between procedures to be sure that my body is healed and able to handle the next procedure. So I had to call work and give them the update and call the person who has been my ride (If I drive myself, I have to be admitted overnight.) I have a very tentative date of September 25th for the next procedure. I'm not holding my breath. :P

I understand the company's concern, and I too want to be as healthy as possible for the next procedure. Which is part of why I'm frustrated. Not only is the wait aggravating, and the constant re-scheduling a nuisance for my employer, but it's the beginning of ragweed season where I live. Ragweed is a major allergen for me and every September, about halfway through the month, I get a sinus infection and an asthma flare. I have no reason to believe that this September will be any different. Of course, when that does happen, you know it will postpone things yet again. At this rate, we'll be into 2013 before I have all three procedures.

I also have to keep changing my blog calendar to accommodate all of the changes. I had deliberately kept the summer light as I knew I'd be having the procedures and wasn't sure how I'd react to them. Now I have to look at my fall schedule, see what I can get done ahead of time, and keep blog tours, etc. to a minimum. I don't want to have to cancel reviews and events at the last minute due to health reasons like I did last November when I ended up in the hospital. I am glad I already decided to scale back my Banned Book Week celebration this year; it runs September 28th through October 6th this year.

So yesterday, I was in a pissy mood for much of the day, and had to go offline for a bit and de-stress. My cat and a good non-review book helped. I'm better today and determined to see this through.

The lung section on the right, the severe asthma one? That's me. I'm hoping that when all of the procedures are done, my lungs will be the moderate one. That's still not great, but the best I can hope for with current medical knowledge and procedures.

Home!

I'm home! Tired, a little short of breath and a little wheezy, but overall doing well. There were a  few small glitches but overall the surgical team was pleased. I was wheezier than they expected after the procedure; some wheezing was expected since they were irritating the lungs in the profess of fixing them but apparently the wheezing was more than normal. Ah, the joys of asthma. But if the surgeries work, I'll see improvement in my breathing. I had 3 neb treatments in 4 hours after I woke up from the procedure, and an IV with steroids. All my vitals were good though and post-op lung function results were within acceptable parameters. I have a check up in 2 weeks and then procedure #2 a week after that. Because I had more secretions than expected and was wheezier than they expected, they're now planning on tweaking the meds for the next procedure so it should go more smoothly.

I'm glad I took tomorrow off from work. Supposedly, most people go back to work the next day. I am doubtful, especially working with young children. I hope to sleep late, and then, maybe, catch up on review writing and reading just for fun. I read several short stories today, in between bouts of dozing, in the recovery room.

Thanks for all of the well wishes and prayers everyone, they helped! ♥

I think my cat has the right idea. I'm going to curl up on the other couch for a bit and nap. The blog will be a little light while I recover, unless I do get those reviews written tomorrow. 

Click here for why I had surgery.

T Minus 14.5 Hours And Counting

So far, so good. The surgery is still on track for tomorrow morning. I leave for the hospital in less than 12 hours, have pre-op baseline testing in 13 hours and the surgery is scheduled in 14.5 hours at 10AM EST. I'm tired, excited, nervous and desperately trying to finish my to-do list tonight. I'm going to try for an early tonight, and get to bed at a reasonable hour. However, I'm a night owl; so that combined with a mild case of nerves and a major case of excitement, means the odds are against me.

If all goes well, I'll be home tomorrow evening. I have Wednesday off from work to rest and recuperate. Supposedly, most people go back to work the next day but I wasn't about to chance it. It's better for myself and my employer to take the day off. If all goes well, I'll be back at work on Thursday. I'm actually hoping I'll feel well enough on Wednesday to catch up on writing reviews. I'm about three books behind; I've read them, I just need to get my reviews written.

Next week, I'm getting the carpet in my condo pulled up and a nice laminate flooring put in. That will help with both my allergies and my asthma, plus it will help with my cat's asthma, so I'm looking forward to that. Of course, the prep for that is a big part of my ongoing to-do list. Obviously the cat and I can't be 
around when the flooring is being done so we'll stay at a friend's house until it's complete.

So there you go, more than you ever wanted to know about my non-blogging life. :P

ETA: more info about the surgery, what's happening, etc.

Surgery Postponed

Yep, you read that right. The hospital screwed up; they were supposed to start me on a pre-op drug last week, and although I called them and gave them my pharmacy info, they didn't call it in. So I talked to the research nurse this morning; she was very apologetic, admitted they screwed up, but they will NOT perform the surgery tomorrow. I have to be on the drug for three days before the procedure.

Oh I was furious. Then I had a meltdown. It's been a major challenge staying healthy enough to be able to have the procedure; I teach at a year-round early childhood center so I can't just call out, I need a sub to cover me; I made other plans for the summer based on the original dates. Sigh. An hour later, a nurse from the pulmonary department called and we talked. Not only did they not call in the prescription, but they were supposed to send me some paperwork beforehand, which they didn't. Sigh. The one good thing was that both nurses I talked owned up to their mistakes, and admitted they, and the medical team, were at fault.

By the time I got to work, I was calmer but still upset. I spoke to the assistant director and she was very calm and reassuring. She empathized with my situation and said not to worry, they'd figure out coverage. I gave her the new dates, had some coffee and by the time I was due in my classroom I was in reasonable shape.

So, new surgery date for the first procedure is now next Tuesday, the 31st. Since there has to be a minimum time of three weeks in between procedures, the dates for procedures two and three have been pushed back a week.

New countdown to surgery - 8 days!

It's really happening! Lung Surgery in 2 Weeks!!!!!!!!!

I saw the doctor today, had more testing and filled out more paperback. Best of all, we scheduled the procedures. I just about bounced my way out of the hospital, I was so excited. I never thought I could be so excited and giddy about a surgery or medical procedure. I have to keep reminding myself that it's not a cure and there's no guarantee that I will see any benefit from the procedure. For those of you who have no idea what I'm talking about, I have severe, poorly controlled chronic asthma. There is now an experimental procedure for severe asthmatics called bronchial thermoplasty. For other posts on this subject, see these: In the Hospital  Home!
Burning My Lungs   Lung Update    It's Official!

So, the first procedure (it's a three part procedure) is scheduled for two weeks from today, on July 24th; the second one is on August 14th, and the last one on September 4th. That last one kinda sucks because it's the first week of classes in the new school year and I'll have to take time off, but oh well. At least my supervisor will be able to plan around it and has lots of time to line up a sub for me. On my way home from the doctor today, I stopped off at school (we're open year around) and filled out my time off forms.


It's really happening! Squeeeeeeeeeeeee!!!!!!!!!!!

It's almost burning time!

On Monday, I talked to the research nurse in charge of the study that I'm participating in. I was approved and accepted into the research study back in April. I was sick enough but not too sick. :D But, I had been on prednisone too many times in a 12 month period so we had to wait three months, hoping I didn't need any prednisone in that time period, and then within that new 12 month time frame, I'd have an acceptable number of prednisone doses. I'm now 2 weeks away from that magic one year mark. I WILL stay off prednisone for the next two weeks. I WILL! Now, that might seem easy, but my allergies are a trigger for an asthma episode, as is humidity (it's summer where I live) and stress. Trying not to stress, about anything, will stress me, lol. So, it's not impossible that I develop an asthma episode in the next two weeks, which would mean going on prednisone, which would mean pushing back the surgery.

Once I hit that lovely, delightful, magical one year mark, I go back to the asthma specialist and repeat previous tests to ensure that I'm still a match for the study. If those results come back acceptable, then we set a date! Right now, the earliest possible date is July 24th, a mere month away. Squeeeeeeeeeee!

When I have that date, I'll post it. Heck, you'll hear me shouting in joy all the way around the world.

Now, the surgery is not a cure for asthma. Nor is there a guarantee that it will, in fact, provide me any relief. BUT...I have nothing to lose. We have tried everything else, I'm on a boatload of meds, yet asthma still rules my life. It's worth a try. Now, I just need some allergy relief and then I'd be downright healthy.

So, please, if you wouldn't mind, cross your fingers, pray, send positive vibes, and so on, that everything works out for me. It will be much appreciated.