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. This 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 SIBO.These bacteria give off gas, which causes bloating. The plan now is to treat it with an antibiotic rifaximin 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’ll 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 he always make it though. “We see no reason why he can’t live another 5 years” 5 years? Geeze, I know 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?
Related Posts:
Have you tried Magnesium for the muscle cramps. Needs to be something like Magnesium Glycinate so it absorbs well. There’s another amino acid I’ve used for cramps from albuterol and will send the name when I get home.
Wow. I finally got home…. sorry for being a slacker. The amino acid Taurine is what I take when I get albuterol muscle cramps. That, along with Magnesium Gycinate have really done the trick. Taurine is on Amazon and is relatively inexpensive.
Great blog and very helpful. I have reactive-airway with mild asthma that turns into bronchitis once or twice a year for 4-6 wks. I have never been on a vent and have only had to go to the ER a couple of times but it still sucks the life out of you. Like you Im a very active 64 yr old that was exercise walking 2 miles 3-4 days a week prior to this flare up. I work as a psychiatric RN at a short term stabilization unit at the county hospital in Fort Worth TX so I can understand where you are coming from. Your feelings are valid and understandable. The sleeplessness can be a big factor in any psychiatric flare up and after what you have been through it is no wonder you feel the way you do. I would suggest you may want to talk to your pulmonologist or your primary car provider to get a referral to a counselor that may be able to help you through some of your issues. I have had ptsd following a bad code blue after I saved a man’s life on my unit and it really helped.
Your story is an inspiration for all of us battling this terrible disease and it was very helpful to see your outlook after so many years of struggle. Keep up the great work and I hope you will have the months of easy breathing that you look forward to. Thanks for the great blog
Hi Tom, thank you for taking the the time for writing such a kind message. Im sorry to hear that you’re dealing with a similar lung condition. Definitely sucks when you can’t breath or the side effects are making you crazy.
Since writing that post I’ve been in the hospital again, just got out on Tuesday. Though I was spared intubation this time, it was a streasful experience. However, a lot of good things came out of it as well. I had a bedside meeting with 5 different specialists who I see for various issues, including my Pulmo and my Otolaryngologist. I’m going to write more about the outcome of that meeting in a future post, but we did address the need for me to see to a counsler. I don’t know if this is true where you live, but in California the patient has to find their own provider and one who will accept their insurance. They basically give a list of names and then you’re on you’re own. Not a great system. Having said that, I do know of a couple people I’ve seen in the past for other things.
Anyway, thank you for reading must stuff and for the suggestions.
I only update my blog about once a month, but you can always find it find me on FB, Stephen Gaudet,
Take care Xxx
Thanks for responding. Do you have any idea how hard it is to get just 2 dr’s in a room at the same time?. The meeting is great news and sounds like your care is excellent. It sound like they really have their shit together….hard to find these days. I just read about your knee problems…been there…done that. I have come to the realization that in my 60’s I’m going to have to pay for the past transgressions I have subjected my body to. The latest is osteoarthritis in my left knee. I broke my kneecap 20 yrs ago when I slipped in water while on crutches after surgery from a torn ACL I received from doing Akido. Snapped my kneecap in half. Long painful hospital stay and 10 month recovery… very bad juju. I had great therapy and haven’t had any major problems since. So long story short…my wife and I purchased a gym quality rowing machine a year ago and I was really rocking it. 40min 3-4 times a week and heading for 1 million meters in a year. Lost 12 lbs and was in great shape. Well…..knee got sore and one thing after another I haven’t rowed in 6 months. Had to definitely lower my expectations for the future. The young 20-30yr olds at work tell me…Dude..relax!…youre 64 and in great shape for your age….you’re still breathing…etc. It just is frustrating not being able to do what you love….not to mention its a bitch getting back in shape at our age. So that being said….good luck with the knees…it will get better…if the meniscus keep bothering you a good ortho surgeon can arthoscopically repair that. if your asthma will allow…its day surgery and a 1-2 month recovery. Had that happen with my other knee. Hope the depression and sleep are getting better and good luck finding a good counselor. Ive had to reassess some of the ways I look at my life as I get older…. It can be hard at times but its part of the process. You should be proud of what you have accomplished so far….your a shining example of people that refuse to submit to a disability. Keep up the great blog…your have the ability to put a face on this disease and help us to relate to the asthmatic problems we all face and it’s a blessing to know we are having the same trials and successes. Your blog is wonderful….we will keep in touch….Tom
Hi Steve. Been reading your blog sometimes and thought I should summon up the words and courage to write a reply. I’m really sorry to hear you go through all this. It’s so much worse hearing or watching someone else go through it. I’ve been through similar. I suffer extremely bad asthma attacks, been intubated quite a few times (can’t walk after all the ketamine!!), had ARDS, had multiple cardiac arrests due to sinus bradycardia due to albuterol etc. etc. I’m only 27. I think I know what you mean when you say you’re going a little crazy after all that stuff because I’ve been there too and I’ve also had extreme sleeplessness too. Everyone’s experience is unique and mine falls into another bracket. I manage to beat my asthma (asthma is beatable and I know this for sure because my asthma attacks are the worst!). I beat it over and over through diet and herbs, first with a collonic cleanse, then with an ayurvedic kapha diet (asthmatics are kapha dosha) and herbal treatments from echinacea to lavender to eucalyptus to every herb that helps asthma. At the moment I live without an inhaler and no other medication and my lung function is just good. I wish a better recovery for you and I hope you do not lose hope. It is possible. x