The good stuff first:
I haven’t had (knock on wood), a severe asthma exacerbation or hospitalization in nearly 5 months! Plus, I’ve now been completely off oral steroids for 3 of those months.
5 months hospital-free isn’t a record, but it’s pretty darn good for me, especially when you consider that we’re now in the throes of the Spring allergy season, which would normally land me in the slammer.
I’m not 100% certain, but I think I can now say with some degree of confidence, that the asthma biologics, namely Fasenra is helping. Even if it’s not the Fasenra, one could conclude that in the absence of more plausible explanations, I’ve certainly been doing better since starting on it. Whatever the basis for this extended reprieve in life-threatening exacerbations, I’ll gladly take it!
That said, asthma exacerbations that are bad enough to require hospitalization are one thing, the quality-of-life stuff, like the day-to-day less severe symptoms, is quite another. So far, I remain short of breath to some degree almost all of the time and continue to require neb treatments at least 4 times a day. BUT, the wild swings in my peak flows, chest tightness and longer bouts of air trapping seemed to have smoothed out a bit. I still get close to the edge at times, but I don’t fall completely off the cliff.
Next month theyre planning to switch me to Tezspire (Tezepelumab). Most of the data seems to indicate that Tezspire works better for people like me who have really weird and hard to manage asthma. I suppose I can always switch back if the Tezspire doesn’t perform as well. But again, Ive been doing good on Fasenra for 6 months, why rock the boat? Time will tell I guess.
The not-so good stuff:
First, my newly diagnosed cervical stenosis and myelomalacia that I wrote about in my last post, is not only a pain in the neck, literally, but it’s also very stressful mentally and emotionally.
Thought to have been caused or worsened by a lifetime of steroid use and osteoporosis, the cervical stenosis in my neck has been described as “severe”. According to my Neurologist, I’m a walking time bomb and could be permanently paralyzed if I were to fall or forcefully jerk my head the wrong way. It kinda freaked me out when I heard that, but apparently this is a fairly common warning from doctors whose patients have problems similar to mine. It’s rare to be paralyzed in this manner, but it does happen. I recently read about a guy in one of the Cervical Stenosis Groups on FB, who fell in his driveway and was instantly paralyzed from the chest down. They thought he had suffered a stroke and didn’t realize that it was his spinal problems that caused his paralysis. Because they had given him clot busters for a presumable stroke, he had to wait 2 weeks to have surgery on his neck. Fortunately, he regained some feeling in his legs following surgery, but he hasn’t posted since then on FB since. Scary stuff.
But it’s not just the neurological deficits that can develop that’s worrisome, it’s the general uncertainty of the outcome of the corrective surgery they’re recommending for me. From what I’ve been able to gather, surgery seems to be a 50-50 proposition. Some people do well, some dont, and a smaller percentage actually get worse. Unlike arthritis or milder forms of stenosis, which can often times be treated conservatively, myelomalacia requires decompression surgery as soon as possible to prevent further damage to the spinal cord. Adding to the stress, my particular type of surgery would have to be done through the back of the neck, which is much more invasive and greatly extends the recovery time. We’re talking months instead of weeks.
As of this writing, both my ENT and Pulmonary doc have given their nod of approval for surgery, though my Pulmonary doc is a little concerned about how I would do in the immediate hours following the surgery. The fear being that it may be difficult to get me off the ventilator. A prolonged stint on a ventilator can put ANYONE at jeopardy for all sorts of problems, but in someone who’s lung function is already severely compromised, it could even necessitate the need for a tracheostomy. Not sure if I wanna deal with a trach on top of everything else.
Ultimately the decision of having surgery will probably be up to me, as long as the surgeon is comfortable doing it. I just have to gather as much info I can and decide if the benefits of surgery are worth the risk. In the meantime, Ive decided to start Physical therapy. At first the Ortho surgeon advised against any type of PT or Chiropractic therapy, but eventually conceded that gentle PT to other parts of my body would be OK. It’s worth a try. Anything to avoid surgery if at all possible.
The other not-so good thing ,
Would you believe lack of sleep? Maybe not as dramatic sounding as having spinal cord issues, but the lack of restful sleep has a huge impact on how I feel day to day.
This has been an on-going problem for me for years and it just seems to get worse. Im not talking about prednisone induced insomnia, like most asthmatics, Ive had my share of “pred-somnia” too. My problem is that my airways don’t usually stay open long enough to get a decent amount of sleep in.
At bedtime I pre-medicate with an Albuterol neb treatment and have no problem falling asleep. Ah, but 2-3 hours later I wake up tight, wheezing and gasping for air again. This then necessitates the need for at least a partial neb treatment or a couple hits off the inhaler so that I can breath well enough to drift off again. This cycle continues throughout the night resulting in maybe 4 hours of deep sleep. Now with my neck issues its even harder to get a restful sleep because of pain and positioning involved.
Just the opposite happens when Im on steroids. If Im on high dose prednisone I can breath much better throughout the night, but I can’t fall asleep. You just can’t win with this stupid disease.
Another factor in play here could be my diaphragm, the major breathing muscle. Chronic lung hyperinflation in people with severe asthma or COPD can impact the way the diaphragm functions over time. If the diaphragm doesn’t contract properly, it becomes harder to draw air into your lungs. This is different than the difficulty you experience when exhaling due to the nature of obstructive lung disease. Im wondering if a nerve conduction test (EMG)on my phrenic nerve (the nerve that supplies the diaphragm), might yield some clues?
In any case, the constant struggle to breath, especially when you’re trying to sleep, at makes it very difficult to get sufficient rest. I often feel sleep deprived. I usually sleep with my head elevated, but unless I’m sitting straight up, which makes it almost impossible to sleep, it’s still hard to breath. I would hate to resort to Bipap, as I don’t have sleep apnea, but I might have to use it as way to support or augment my breathing if the current situation doesn’t improve.
The so-so stuff:
Uh, that would probably be my posterior glottic stenosis. My PGS is probably the least problematic of all my other breathing conditions. There’s usually no problem with it until there is a problem, and then things can get bad really fast. Its been almost 9 months since my last dilation surgery and my vocal cords are open about 70% open, which is still good. The problem is that the scar band is starting reform, tethering my cords together, which means the opening( glottis) in between my vocal cords will start getting smaller again. Most likely I’ll need another dilation within the next few months to re-open it.
Other than a nasty sore throat afterwards, normally the dilation surgery is no big deal. The surgery itself takes less than an hour. In fact, for most people it’s usually done on a outpatient basis. But because of my lung disease(s)and how touchy my airways can be, I usually end up staying in the hospital for a day or two. The reason this is in the so- so category, is because Ill probably have to have these throat surgeries for the rest of my life. To date I’ve had 5 surgeries, but hopefully the intervals in between surgeries will decrease over time.
The wrap up:
So those are the major good, bad and so-so things happening with my body. Interestingly, the other conditions mentioned above are all in some way or another, related to my asthma. That’s why it’s so important to take your asthma or COPD seriously and to attack it from all angles.
But Id like to end this post with one last piece of good news….
17 years into my Fitness walking journey, which is also how long this blog has been in existence, Im still at it. Despite the seemly endless pile on of health burdens, I continue to get out and walk 2 to 3 miles, sometimes more. I walk almost every day, uphill, downhill, rain or shine, pain or no pain, short of breath or not so short of breath. I also continue to play the bass guitar when my neck and hand pain allow. Its not only a great mental escape for me, but its actually a good way to maintain hand and finger dexterity, which has been affected by the stenosis in neck.
In the long run I believe I’ve benefitted from my commitment to exercise, active involvement in my health care, and the sheer willpower not to be a victim of my circumstances. Because at age 67 and at the amazement of a lot of health professionals and scientists who study weirdos like me, Im still around and have no intention of slowing down anytime soon.