If you’re a hardcore asthmatic or COPDer you know the drill. It’s begins with increasing difficulty in breathing, followed by a trip to the the ER, then a possible stint on life support, followed by a week in the ICU, a miraculous reversal of symptoms and then home to start the recovery/healing process. Of course there are variations to this scenario, but the story is pretty the same every time.
Living with this disease since birth, I’m certainly no stranger to this seemingly never-ending up and down, good and bad cycle. But this particular recovery period, for which I’m currently still undergoing, is different in so many ways. It’s not so much that it’s taking longer than usual to regain my strength or get my breathing back to baseline, it’s mostly been the debilitating physical side effects of the drugs and the emotional hit from the hospitalization itself. Simply put, I’m breathing better, but I’m physically and mentally shot. Id even go as far as saying that Im probably clinically depressed.
Some of this is caused by lack of sleep, we all know how prednisone can cause insomnia. We even have a name for it, pred-somnina. But, in all my years of being on this drug I’ve never had insomnia affect me so severely before. This time I went 8 full days without a single moment of sleep. We’re means none, nada. Not one minute of sleep where you actually loose consciousness for over a week. Loosing sleep for a couple days while on Pred is pretty common. Heck, you can get a lot done when you’re mind is whirling 24 hours a day. But eventually you’re body and brain gets tired and needs sleep. By the 5th day of no sleep I was starting to get dizzy and had a hard time focusing on anything. At one point I started hallucinating. Finally on day 9 with the help of double doses of Ativan and Ambien I fell asleep for a couple hours and that gradually grew into 4 per night which I’m currently at, albeit a little groggy.
Next up are GI issues, specifically severe abdominal bloating. It’s been near constant and worse after I eat. Ive never had bloating this bad before and it’s one of the reason my breathing got so bad in the first place. The symptoms began about 2 weeks before this latest asthma flare and hospitalization. The bloating gradually subsided while I was on high dose steroids in the hospital, but has now re-emerged as I taper down my pred dose. In a healthy person this kind of bloating is more of a nuisance than anything else, but when you have really bad lung disease and severely reduced lung function, its is a huge problem. When your stomach and/or intestines becomes overly bloated, it can impede the movement of your diaphragm, which makes it that much more difficult to breath during an asthma flare. If the bloating gets severe enough and your asthma gets out of control or you have chronic lung air-trapping, this can bring on a real emergency.
After being evaluated by the GI docs earlier this week, its thought that because I’m intubated so often and because they always put a naso- gastric tube into your stomach when you’re intubated, that some foreign bugs may have migrated down there causing a bacterial overgrowth in the small intestine, also known as SIBOSIBOSIBO. These bacteria give off gas, which causes bloating. The plan now is to treat it with an antibiotic (rifaximinrifaximinrifaximin) that resets all the intestinal bacteria. Then I’ll start on probiotics to re establish the good bacteria. I’m too high risk for respiratory failure to have a colonoscopy or other diagnostic procedures done, so if other problems arise they’ll do a CT scan of my stomach and intestines.
Next on my list of greatest hits, is another common side effect of the pred… aka muscle cramping! You name the muscle, it will cramp. In my case it becomes even more of a problem, because Im not only on prednisone, but Im on other meds which can also cause cramping. We’re talking non-stop muscle twitching and full on cramping. Morning noon and night, something is always cramping up. Not only is it painful, but it makes sleep that much more difficult.
Now for the mental stuff. The doom and gloom phase of this recovery ( This is a new category Ive created for the recovery phases of bad asthma exacerbations), started before I actually left the hospital. It began during one of my delirium episodes while in the ICU a couple weeks ago. They had me sitting up in a chair, when all of a sudden this horrible sinking feeling came over me like a punch in the gut. I came to the realization that Im never going get better. Regardless of a positive attitude or winning spirit, this is the way my life is always going to be… breathing tubes and ICU delirium. Sure, I probably still get the occasional reprise where things seem more normal,but my asthma and associated breathlessness will never get better. That’s a fact. I vividly remember the doctors telling my partner…”Steve is an unusually strong person. He’s been through this so many times, but you always make it though. We see no reason why he can’t live another 5 years. 5 years? Geeze, I no I’m lucky to have lived as long as I have with this condition, but even at age 64, 5 years doesn’t seem like very long. Its a drop in the bucket.
I think being sleep deprived is partly why Im feeling so depressed over this recovery. Dwelling on the statements that I might live to be 70 years is not helping matters. I know I should be happy that Ive beat the odds for so long, but it hasn’t exactly been a picnic. I’ve fought this disease hard and have held on tight my entire life in hopes that one day I might achieve an extended period of good breathing.. perhaps a full years worth, even 6 months would be nice. The point is, I don’t care how long I live, I just want to experience a good chunk of time where I don’t have to think about my breathing, or hospitals or breathing tubes or anything of that crap. Just the joy of breathing normal without having to work at it.
For those who have been through similar experiences after a severe exacerbation and or hospitalization for asthma, it’s not all in your head and you’re certainly not alone. The mental and physical impact of surviving a near fatal asthma \or other medical condition requiring a lengthy ICU stay and/or stint on life support, are very real and more common than you might think. Here’s a recent study done in Europe about this very subject. Essentially you develop a PTSD. More attention needs to be focused on the aftermath and recovery of severe asthma excaerbations. Clinicians need to reach out to their patients to see how they’re coping, both mentally and physically after a bad asthma flare or stint in the ICU or on a ventilator.
Moral of the story, severe asthma exacerbations and it’s treatment can bring on a whole host of seemingly non related complications. I guess the real question is, is there anything the disease doesn’t cause?