Welcome to my world…..
This scenario plays itself out pretty much on a monthly basis for me. The only thing that really changes is how bad things will get and whether or not Ill end up on a ventilator. Be it be 1 or 2 weeks in the Intensive Care Unit, or in and out of the hospital in one or two days, the length and severity of my asthma exacerbations (and I’m sure those of others), seems to be totally unpredictable. One thing’s for sure, long or shorter stints, these exacerbations happen way too often and make living a normal life nearly impossible.
The latest example of this unpredictability factor, is hospitalization #142 which occurred May 26 through 28th 2019. I was recovering slowly but steadily from a previous much longer hospitalization just 9 days earlier, then woke up one morning and suddendly couldn’t breath again. I went back up on my pred and toughed out the next couple days with home treatments. On the 2nd day things weren’t improving so I texted my pulmo for advice. He was sympathetic to me not wanting to return to the hospital so soon, but with all that had been happening with my vocal cords, recent intubations and the fear that I might be rebounding from the earlier flare, ( which can be more severe than the original flare ), he recommended that I bite the bullet and go in anyway, of which I reluctantly did.
Things were pretty dicey for the first 24 hours in the hospital, but then my lungs suddenly pulled a welcome 180 and opened up. By the second day, almost like magic, my ABGs improved and I began to move more air and breath easier. It was actually kinda weird.
Perhaps the only indication that this flare wouldn’t get as bad as the previous, is that my oxygenation remained pretty good throughout. I only desatted during the early phases of the flare. After that, my O2 sats remained in the low to mid 90’s the entire time. On bipap with 35% O2 my sat was 100%. I was able to come off oxygen completely after only 36 hours. Pretty amazing, considering that just 9 days earlier I was on a ventilator and every time they would take the breathing tube Id crash and theyd have to put it back in and put me back on the ventilator.
Nothing was done differently treatment wise this time, for whatever reason my lungs just responded faster. In fact, in trying to delay the possible need for another intubation, they actually treated this flare more conservatively . I did 15 hours of Bipap (settings of 15/4 with O2 at 35%), Albuterol at 10mg per hour X 24 hours via Aerogen cont neb system, Ipratropium Q4 hours, Advair BID, 2 grams of Mag Sulfate, IV steroids, IV Fentanyl for air hunger and some fluids. Pretty much the same stuff as the last admission, only this time I didn’t tire out or go into respiratory failure.
You just never know with asthma how long a bad flare will last or how long you might be laid up in the hospital. There seems to be no rhyme or reason, my lungs do what they want. This rapid kind of turn around is a rarity for me. My last admission lasted 11 days, this time it was on 2 and a half days. Boy, I wish all of my asthma hospitalization were only 2 days affairs… and without the need for intubation or a ventilator. Im sure the government and my insurance company wouldn’t mind either. ( My hospital bills so far for 2019. This doesn’t include the doctor bills, just the hospital)
As with most of my asthma hospitalizations, as soon as I turn the proverbial corner and am not in danger of actually dying anymore, I ask to go home as soon as possible, which is usually the following day. Most of the time Im discharged directly from the ICU. I have no desire to continue my recovery in a hospital step unit or ward somewhere. When I start to feel the slightest improvement I ask to go home and recover there. I wanna get as far from the place as possible.
Moving forward, Im hoping to achieve and maintain a degree of stability over an extended period of time for a change I guess in my case that’s anything over a month, which interestingly is about the same amount of time it takes me to taper down off the steroids. The longest I’ve ever gone in between hospitalizations is 8 months and that only happened one time. Despite the cutting edge medical care and all medications, including experimental therapies I receive for my asthma, I still end in the hospital every 1-3 months … its just the nature of extremely severe asthma.
A break from these exacerbations/hospitalization would allow me to start refocusing on my fitness regimen and start to enjoying life again. I still need physical therapy on my knees, but my bad breathing seems to be in remission at the moment, so that makes me feel a little more positive about things.
Here’s a brief photo summary of my 2 day hospital stay….
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Stephen:
Wooww!! I’m deeply sorry about what your going through. I hope you’ll ge better for long term. Sorry to ask this but: Did you try to made a test moving to another area, i mean, another state? To see if it improve at least a little bit? I’ve been in Chicago, Florida, New York and it doesn’ matter, my asthma just tic toc my door and boom!! Running for Nebs and inhalers. Best wishes and prayers for you brother!
Juan
Dear Juan,
Yes, Ive lived on both coasts of the US and do I much better here in Northern California. I live to close to the water, so I usually get a good ocean breeze in the evening. A lot of people say they feel better in the desert, but that is too extreme for me.
How are you feeing?
Thank God, since the last hospital stay, which was 3 weeks back, i’ve been better. But still on Breo Ellipta, Ventolin as necessary and montelukast. I discontinue my nebs of albutrerol and Ipratropium. Honestly, every day i have syntoms but, this couple weeks i’ve been doing better. I’m just trying to maintain the best control as possible. At the moment, here in PR, this summer so far its been better than last year. Last year we faced a lot of Saharan Dust and that is so irritant to the airways that no matter what i do to avoid a hospital visit, I just end gasping for air and running to the ER. But, so far, luckly, better!! One of the problems i have with my asthma is that i generate a very thick mucus in the lungs and it turns to forms mucus plugs. That is very very bad and when that happens i feel like i’m gonna choke to death. Well! i know that this sounds crazy, but i’m drinking a mixed of honey bee with lemon and aloe vera every day, I don’t expect much of that but let’s see what happens. Some people say that it helps with inflammation so, let’s see. Take care!!
Juan
Juan,
I hope you continue to feel better.
I wanted you know that the team of pulmonologist and researchers at the hospital I go to ( University of California Medical Center), is working on a new drug that might help people like you who have severe asthma and who develop thick mucus plugs. The current drug used to thin out secretions is called Mucomyst. However, it’s too harsh for most asthmatics to tolerate and causes even more wheezing and shortness of breath. This new drug will thin out the mucus, but will not have the negative side effects. So there’s hope on the horizon.
Clinical trials will begin this summer.
Steve
Hi Stephen!
I have ACOS (both Asthma and COPD) and love reading your blog!
It’s a little scary to read how bad it can get, but I see you fighting you way out of the hospital beds time and time again!
Good for you! So happy to read this last exacerbation was only a ‘short’ one and you where out of the hospital in 51 hours. I’m in the Netherlands and I can’t imagine how you can keep up with your bills. We’re very blessed here as far as health insurance goes.
There is so much I want to say to you! For now, just; keep fighting! You’re an inspiration!
Hi Suzanne,
Thank you for taking the time to write.
Im sorry to hear that you have ACOS. It’s bad enough having one of these conditions, it must be awful having both. I hope you’re feeling well at the moment.
Yes, the cost for medical care in the US is outrageous. The San Francisco area probably has the most expensive medical care in the the world. For someone like me who’s in the hospital lot, it’s millions of dollars per year. Fortunately, Medicare and my private insurance covers most of my bills, though the insurance itself is not cheap.
Xx Steve
I have CF and am in the hospital a lot too. I absolutely hate tune ups (they pump me full of antibiotics and steroids for 2 weeks). Anyways with your many hospital visits and antibiotic use I’m assuming you’ve encountered C diff before. Do you have any advice on how to not feel so shitty (pun intended) and dehydrated with an infection. I get it at least twice a year
Hi Taylor,
Sorry to hear you’re in the hospital so much and that you have these infections. I guess Im super lucky, I’ve only had C-diff one time ( that was enough thank you), and I rarely pick up other infections. But I totally sympathize what it’s like spending so much time in the hospital.
Afraid I don’t have any advice for dealing with chronic infections, but I’m usually around if you just need to talk or vent.
Steve
Hi Stephen,
I love reading your blog! It is one of very painful disease, I don’t know how feel a asthma patient but I sow my mother as she is a asthma patient. Thanks for your knowledgebase article.